The elevator to success is out of order. You'll have to use the step at a time. ~Joe Girard

Spreading Awareness

My purpose in writing this blog is to spread awareness and provide support to parents of children with and without special needs. I have one child with a Learning Disability, more specifically, a Visual Processing Disorder including Dysgraphia and another child with a disease called Eosinophilic Esophagitis, an allergic white blood cell disease that attacks the esophagus.

Saturday, November 20, 2010

Food Trials

This has proven to be a complicated process, just as I know it is for most families with EE.  Andrew failed his trial with bison based on symptoms.  He was having stomach pain, chest pain and increased regurgitation.  The GI took him off the bison and had him back on elemental only for about a week before he was able to trial his next food.  He noticed a difference in the way he felt almost immediately.  We knew we were taking a chance with bison.  On the food introduction list that we are following, most meats are in the "C" list category, where as "A" and "B" list foods are less allergenic.  However, months ago, Andrew had been told he could eat a meat first, so the doctors wanted to grant him his wish, and he started with one of the least allergenic meats.

After he failed bison, he chose to start over again with sweet potato, a vegetable on the "A" list.  He has truly enjoyed eating sweet potatoes, a food that he did not like before the elemental diet.  It's amazing what 9 months on EOSplash will do for the taste buds.  I mash them with a little of the water I boil them with and slice them very thin and bake them in the oven.  He has also had a baked sweet potato.  He never complains and will eat them any way they are fixed, but prefers the "french fries" best.

Believe it or not, we had 2 weeks symptom free so we began peaches.  I'm not completely sure how they are going.  He says that he is fine, but I know that his stomach bothers at times.   It is hard to say if it is an "EE" hurt or just from the constant constipation.  We just keep trucking along and hoping for the best. 

Our doctor recommends scoping after 5 foods,  which would be 10 weeks.  We are hoping to get a scope done over Christmas Vacation.  I never like to get my hopes up.  There have been so many times he has been symptom free, but has had 75 or more eos per hpf....even on the elemental only diet.  But wouldn't it be a wonderful Christmas present if he was able to eat 5 foods safely and scoped clear for Christmas!!

***I feel as though I need to apologize for not posting in such a long time.  I accepted a 2 week substitute position at my children's school (that was 6 weeks ago), and there is no end in sight.  Between that and my children I have been extremely busy and seem to have neglected my blog.  Although I never had any intentions of accepting long term substitute positions, I am completely enjoying teaching has reminded me why I went into the profession so many years ago.  

Tuesday, October 12, 2010

Eosinophilic Esophagitis is in Remission (FINALLY) on Elemental Diet and Flovent - Now Bring on Food Trials!

Finally...Andrew is in remission!  The scope he had on Thursday September, 29 confirmed it.   The elemental diet of EO28 Splash plus swallowed flovent has done the trick.  It's taken a while to figure out the right combinitation, but thankfully we have. 

Andrew had been anticipating this scope for quite a while.  He knew that if it was clear he would be able to begin food trials.  As we waited for his procedure to begin he chatted with the nurse about normal 8 year old boy stuff, as at ease as if he was talking to a friend's mom.  It still amazes me how unconcerned and comfortable he is while he is at the hospital.  I, on the other hand, feel sick to my stomach each time he has a scheduled procedure.  Then the conversation turned to food and what food he wants to be able to eat if he has a clear scope - a reminder of the reason we were there, although to Andrew it was still a matter of fact conversation.  Although I am glad that he does not get nervous or upset about going to the hospital, there is still something unsettling about knowing that your child has had so many procedures that he is actually comfortable, at ease, and the staff knows him by name.

After the prep time was over and I signed all the papers, basically signing my baby's life away, he was rolled back to the OR where we met the anesthesiologist, the GI and the rest of the team.  They answered any questions Andrew, my husband or I had and then they put the mask on his face and he started to fall asleep.  I absolutely hate that feeling-watching my baby go under.  I gave him one last kiss, told him I love him, and my husband and I went to the waiting room until Andrew was brought into recovery.

About  half an hour later a receptionist came for us and brought us to recovery.  Andrew was still partially asleep, in that drugged state.  Dr. Caicedo walked in shortly after.  I could tell by the look on his face that he had good news for us.  It was the best looking scope to date.  He said there were no visible white spots.  The only other time that has happened was when Andrew was in remission on systemic steroids.  After he said that, there was this little drugged voice from the bed, "Does that mean I get to have food?!"  My heart almost broke.  Even though he was still drugged, he knew enough to understand what was being said.  Dr. Caicedo was optimistic, as were we, but we had to wait for the biopsy results.

Fast forward 5 days:  A nurse calls to let us know that Andrew is definitely in remission, which meant that Andrew could begin his first food trial.  I needed to speak with the doctor about the particular food that Andrew wanted to eat (bison) before allowing him begin, which took another 2 days.  After waiting so long to eat, I was not going to do anything to jeopardize it by not speaking with the doctor before we began.  So a week after the scope we got the green light from the doctor.  On Friday we purchased some ground bison and on Saturday, 282 days since the last time he had food, Andrew was able to eat a bison burger.

What a wonderful lunch we had.  We were all able to sit down and actually eat food as a family for the first time in over 9 months.  Watching Andrew eat his bison burger brought so much joy to our family.  He ate it so slowly, savoring each bite.  He enjoyed his meal thoroughly.  Madison was so happy for him.  She grabbed her camera before lunch started and continued to take pictures of him throughout lunch. 

When Andrew started his elemental diet he was told it would be for 6 weeks.  It has been 282 days.  Can you imagine not being able to chew food for 9 months? How would you feel knowing your family is eating meals and you can't each day for 282 days?   Watching your friends at school eat lunch, celebrate birthdays with cupcakes, use candy for lessons for 38 weeks and not participating?  The list goes on and on.  But my Andrew did this with maturity, grace, and so little complaints.  I know the challenges have just begun, introducing foods can bring on issues of their own, but I am so grateful that God has given Andrew the strength to deal with curve balls that are thrown his way.  I know that as a family we will be able to handle the challenges of food trials if we follow Andrew's lead.

The next step?  Andrew will continue eating bison for 2 weeks.  If he has no symptoms, he will reintroduce a food every 2 weeks.  If symptoms occur we will stop that food and he will be scoped.  If no symptoms occur, then he will be scoped after every 5 foods , or every 10 weeks.  There is a systematic way to introduce foods based on a scale of the least allergenic foods.  It usually starts with vegetables, fruits, and moves on from there.  We are deviating some from the protocol by allowing Andrew to start with bison, however, it is on the bottom of allergenic scale for meats.  Now it is just wait and see....Wish us luck!

Sunday, September 26, 2010

Triennial Meeting - IEP vs 504 Plan

Thursday we had Madison's Triennial meeting along with her IEP meeting.  As much as I know the goal is for the child to place out of special education and no longer need services, at first, I was hoping that my daughter would still qualify.  I wanted her to have the option to receive pull out services if she needed them, as well as maintain her current modifications.  However, as I began to think about it, I realized that it would be okay if she didn't qualify, because she could still receive a 504 plan for the remainder of her school career....even through college.   Many parents do not realize that if their child tests out of receiving special services that they are still eligible for a 504 plan, allowing them to continue to receive their accommodations.  As stated in the article "A Parent's Guide to Section 504 in Public Schools" 
Section 504 states that: “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...”  
Because a person with a disability is anyone who:  " (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” a child that "tests out" of services, but would still benefit from accommodations can and should receive a 504 if they no longer qualify for an IEP.  As well as including specific learning disabilities, a child may also receive a 504 for medical conditions such as diabetes, epilepsy, allergies and for my EOS followers, it would include eosinophilic esophagitis as well.  If one of these issues are impeding your child's ability to perform in school, they should qualify for a 504.  The purpose of this plan is to level the playing field for our children.  What sense does it make to phase a child out of their IEP and give them no support afterward?  It is in your child's best interest to know which accommodations will benefit them while they work toward a complete phase out.

As for Madison, it didn't end up making a difference.  After struggling with the decision to have her privately tested again or letting the school do it, and then thinking about what to do if she didn't qualify, she reading, writing and math.  However, her resource teacher was shocked about the math, saying that she knows Madison knows how to do the problems.  It was visually confusing, but she also could have just had an off day.  Her IEP team is wonderful including the resource teacher, a new school psychologist (who wrote up the most comprehensive eval I have seen from a school psychologist), the classroom teacher and principal.   We reviewed her test results and rewrote her IEP making it more effective for her needs now.  It was a very productive meeting. 

So, I know I said in the beginning that I wanted her to still qualify, and I did/do, so that she can receive the services that she needs, but as a parent, there is still that feeling you get in your stomach and heart when you hear the news.  I want what is best for my child, and I will never stop fighting to attain that, but truth be told, there are so many times I just wish that she didn't have a learning disability and could complete all her work as easily and quickly as most of her peers.  However, I am so blessed that she is my daughter.  She is such a hard worker, so smart, kind, loving and beautiful.  I'm so proud of her!

Tuesday, August 24, 2010

Back to School

Wow, it's hard to believe that the children will be going back to school tomorrow.  The summer has flown by as it always does, leaving me feeling rushed as the last day of vacation has arrived.  Although we always look forward to the "lazy" days of summer vacation, somehow, they are always filled with appointments and activities that somehow leave us little time for that "laziness" that I crave in June.

This week has been filled with last minute shopping, Back-to-School Night to meet the teachers and my personal meetings with my children's teachers to discuss their various special needs.  Of course Madison loves the shopping part, whereas Andrew would rather be home doing anything else.  They both enjoyed meeting their teachers, discovering the other students who will be in their class and exploring their new classrooms.  And then there are the first teacher conferences that I set up before school starts each year.

Because both of my children have special needs, I feel it is important to schedule a meeting with their new teachers before they ever step foot into their new classroom.  For Madison, this gives me an opportunity to go review her IEP with her new teacher so that she will be familiar with the accommodations that Madison is supposed to receive during the year.  This year when I contacted Madison's teacher, I asked to meet with her, stating that I knew she would be changing classes for subjects.  Her email reply asked if I would like to meet with the entire 5th grade team, as Madison would probably be working with each of them at one time or another.  That immediately gave me positive feelings about the year.  The meeting went well.  The entire team listened to me discuss Madison's background, her strengths and weaknesses.  They also asked questions and gave suggestions as to how they could make modifications in the classroom to better accommodate her.  It was a truly productive and positive meeting.  I am a true believer that when the student, teachers and parents work together, the education process works at its best.

Andrew's meeting was less involved, but yet just as important.  I needed to explain to his teacher what eosinophilic esophagitis is and what impact it has on Andrew.  She needs to be aware that he is on an elemental diet and will need to drink his "juice boxes" at various times during the day.  Andrew also asks that I go into his class the first day of school and help him explain to the class why he can only drink.  So I needed to set up a time with the teacher for me to do this.  The meeting went well and I will meet with the class tomorrow. 

Here's to a great year!  First conference....done!

Monday, July 26, 2010

Elemental (Amino Acid-Based) Formula Coverage

For some children with Eosinophilic Disorders, an amino acid-based elemental formula is a large part, if not the only form of nutrition that enters their body each day.  Due to allergies and reactions to so many foods, they are unable to consume a regular diet of everyday foods.  These formulas are life-sustaining to these children.  Without them they are sick each day, some to the point of vomiting constantly or having recurrent diarrhea. 

With this in mind, one would think that the insurance world would see it as a necessary medical need, therefor providing coverage for this extremely expensive and unpalatable medical food.  In most states, this is not the case.  There are only 14 states that provide coverage for elemental formulas at this time, and some of those with minimal coverage at best.  Here is that list with links to their coverage:

Monday, July 19, 2010

Individualized Education Program (IEP) and Tips for Parents

With August quickly approaching, so is the beginning of least for those of us that live in the south.  The start of school also means IEP meetings for many of us with children with special needs.  Below I have given an overview on Individualized Education Programs (IEP), as well as listing resources to help parents prepare for an IEP meeting, whether it be your first or your fifteenth.  Hope you find this post useful.

An Individualized Education Program is mandated by the Individuals with Disabilities Acts (IDEA).  The IDEA requires the public schools to develop an IEP for every child that has met the requirements to be considered in need of special education or related services.

In order for an IEP to be successful, parents, teachers, other school staff, and even sometimes the student must work together to identify the student's needs and the best way to address them.  So if your child has been identified with a learning disability and is eligible for services, the next step is to set up an IEP meeting.

Saturday, July 17, 2010

Thanks To the National Institutes of Health (CoFAR) and Voters for EGIDs at Chase Community Giving

During National Eosinophil Awareness Week it was stated that the National Intstitutes of Health (NIH) gave $0 a year in funding toward Eosinophil research.  I am happy to say, that is no longer the case.  In a press  release on Wednesday, July 14, NIH Expands Food Allergy Research Program Consortium of Food Allergy Research Renewed With a Five-Year, $29.9 Million Grant, NIH announced the Consortium of Food Allergy Research (CoFAR) will be funded for 5 more years.  CoFAR has been working on ways to treat and prevent food allergies since 2005.  It will now broaden it's scope to include genetic causes of food allergy and studies of food allergy associated with EGIDs, mostly EE (EoE).

While food allergies are associated with the production of immunoglobulin E (IgE) antibodies as a response to a food which may lead to symptoms anywhere from hives to anaphylaxis, EGIDs can also be associated with IgE, but are also associated with stomach pain, vomiting, chest pain, and trouble swallowing.  There is also inflammation, irritation and a large number of eosinophils in the esophagus.

Tuesday, June 29, 2010

No I CAN'T -- Yes, You CAN - Building Your Learning Disabled Child's Self Esteem

Reading has always been a struggle for Madison.  It has taken a long time, has been challenging to figure out words, and she just plain has not liked it.  This is all related to her Visual Processing Disorder.  In order to help her with this she has endured Vision Therapy for 2 years--the problem is, she does not recognize the progress she has made.  She has programmed herself to believe that reading is difficult, and will be difficult, regardless of the gains she has made over the past couple of years.  So the question is, how do we reprogram our children to believe that they CAN do something that has been forever difficult and challenging to them?  How do we encourage them to take the risk to forge ahead?  How do we get them to ignore that "bully" in their mind telling them "this has always been difficult, therefor I still can't do it and I don't want to try...I'm just going to fail".

Thursday, June 10, 2010

Andrew Update: Biopsy and Ph Probe Results

We received Andrew's results from his endoscopy/biopsy and ph probe  a couple of weeks ago, but  things have been crazy so I haven't had a chance to post the results.  Let me start by giving a brief review of his treatment history to this point.  When he was diagnosed at age 3 he was put on a high dose of systemic steroids which did not help.  Over the next few years he was on and off swallowed steroids with no success as well.  At that time we changed GI's and he had him patch tested.  He started an elimination diet of 5 foods and his Eos count went up.  He was then patch tested again at a different clinic, was taken off 13 foods, and again his Eos count went up.  At that point we put him on an elemental only diet (Neocate Splash) for 8 weeks.  When he was scoped after those 8 weeks there were so many eos phf they couldn't count them.  So then we decided to try a round of high dose steroids while he was also on the elemental diet.  So now for the results....

The endoscopy showed that there is still furrowing and irritation, but no visible "white patches".  The biopsy results showed that he is in histologic remission (5 eos/phf, the first time he has ever been in remission).  The Ph probe showed that he has excessive reflux which is all acidic, apparently the cause of irritation in the esophagus.  So what about the treatment?  Our doctor explained to us the importance of getting Andrew's reflux under control first.  So he will be going from 20 mg of prilosec 1x/day to 40mg 2x/day.  Pretty big jump.  Next we need to taper him off the high dose steroids.  This process takes 4 weeks.  After he is weaned off the steroids, we will see if he can maintain remission off the steroids, but still on the elemental only diet for at least 3 weeks.  The doctor that our GI is consulting with suggests that we have Andrew scoped again after this period to see if he has maintained remission.  Our GI feels that we could go on symptoms, and if he doesn't have any symptoms after the 3 weeks, we could then begin to trial a food.  So that is the treatment plan.

Tuesday, May 25, 2010

Learning Disabilities and End of Grade Standardized Testing

I always dread the end of the school year.  There is so much pressure put on students regarding end of grade standardized testing.  The teachers have pressure put on them for their students to perform well, so many of them in turn put pressure on the students.  This can cause even the best of students stress and anxiety.  So what about the children with learning disabilities?  Research has shown that these students experience more stress and anxiety on tests than their non learning disabled peers.  So imagine having to cope with your disability as well as an added amount of stress.

I personally don't agree that all children's competence or knowledge can be assessed by the format of standardized tests.  As we have hopefully become more aware over the past several years, children learn differently and need to be afforded differentiation in instructional and evaluative strategies.  Not all children learn through pencil and paper question and answer (especially the LD child), which is the format of the standardized tests.   This being said, standardized end of grade tests are the reality and we need to know how to prepare our children best for them.

Friday, May 21, 2010

In the Hospital: National Eosinophil Awareness Week - Days 5 and 6

Well, it seems fitting that we have celebrated days 5 and the beginning of day 6 of National Eos Awareness Week in the hospital.  It is a scheduled visit.  Yesterday, Andrew had his 8th endoscopy, as well as his first ph probe, which is still in as I type this entry.  Six of those 8 endoscopies have been done in the last year and a half.  That means six trips to the hospital, six days of missed school, six days of anxiety (at least for Mommy, if not for Andrew), six times under anesthesia, six scopes being put down my baby's esophagus...none of this without risk, but all of this to find answers, put my child into remission and help him live a healthy more normal life. 

As I sit here and watch him play the hospital video games with  the probe in his nose, he seems so content.  I know, that seems odd, doesn't it?  I am so lucky, because my son is really such a trooper.  I truly hate this disease, but when I look at Andrew, I am reminded that I have so much to be thankful for.  He is such a brave, strong kid.  He rarely complains, even though he has not had a single bite of food since January 2 of this year.  He drinks eight of his Neocate Splash juice boxes each day and never complains.  Even while on those, he regurgitates after drinking them more than I realized.  With this probe, he has to push a button each time "junk comes up his throat" (when he regurgitates), which has been at least 30 times a day...I've lost count.  But still, he never complains.  He wakes up from a scope and is happy.  He had to stay in a hospital bed all day with a computer attached to him because of the probe, but he didn't complain.  His IV hurt, he told me, I told him it had to be there and would feel better when he was sleeping and he went to sleep.  Some children may not be so calm and cooperative. 

So if we have to fight this disease, I'm glad I have Andrew to show me how to be brave and patient.  He is an amazing child that has to deal with more than a child (or an adult for that matter) should, but he does so with such grace and courage.  I learn so much from him.  Andrew, you and Madison are my heroes, and I love you dearly!

Wednesday, May 19, 2010

Thank you

Wow! The week is only half way through and yet, I am already so touched by all of the support our family has gotten for National Eosinophil Awareness Week. I have family and friends, old and new, that are participating in the activities that I have listed on this blog and Facebook. My niece went out and bought a pink shirt just so she could write "I am wearing this shirt to raise awareness for eosinophilic esophagitis disease" on the front and then "for my little cousin Andrew" on the back." She, as well as other friends, have passed out dum-dums. Friends and family have posted information on Facebook each day. We even had a former preschool teacher contact us to write an article about Andrew to help spread awareness. People are good. It is amazing how people can come together for a common cause if you just ask. We are so blessed to have so many wonderful people in our lives.

So thank you to everyone that is helping us spread the word this week. It has touched my heart and means more to me than you can know. Andrew is so lucky to have so many people who care about him.

Tuesday, May 18, 2010

Eos Awareness Week: Day 3

Did you know that all of the funding for Eosinophilic Disorder Research comes from private providers. The National Institute of Health currently provides $0 in funding for research for these diseases that are rapidly on the rise.

Today is the day to PARTICIPATE in Eos Awareness Week. A few suggestions given by are:
*VIRTUAL WALK – Encourage those in your community to participate in APFED’s

National Eosinophil Awareness Virtual Walk. Get together some friends or your local
support group, Register online, collect pledges, and then meet at local park for a
“Walk” and social event.
*SIGN UP: Take the day to commit to participating in an APFED event, like

attending the conference this summer. Get registered at: APFED 2010 Conference
*ATTEND A LOCAL APFED EVENT: Check the Fundraising Page of the APFED

website to see what events are planned in your area and show your support by
attending. The list will be updated as events come in.
*WEAR YOUR APFED SHIRT: A simple way to participate is by wearing your

APFED t-shirt. If you don’t have one, you can purchase one by visiting the APFED

Monday, May 17, 2010

National Eosinophil Awareness Week - Day 2

As I had mentioned previously, this week, May 16 through May 22 is National Eosinophil Awareness Week.  I am going to try to share different videos, stories or activities throughout the week in celebration of this week.

My first entry is an article that I wrote for CNN ireports:

Life Without Food:  National Eosinophil Awareness Week - May 16 through May 22

May 16 – May 22 is National Eosinophil Awareness Week. What is that you may ask? My son suffers from the most common Eosinophilic Gastrointestinal Disorder (EGID), Eosinophilic Esophagitis (EE). I will try to paint you a picture…

Think about food…how many times you eat each day, how much you enjoy the smell as it is being prepared, the anticipation of a favorite meal or going out to a restaurant, the flavor of your favorite food when it touches your tongue, your morning cup of coffee, the sense of togetherness you enjoy when you share a meal with family or close friends, the excitement you or child gets when they see and then bite into their birthday cake, holiday meals with loved ones, taking a spontaneous trip to the ice cream parlor with someone special on a hot summer day…and the list goes on. There are so many ways we enjoy food as an individual and as a sense of community. Now, imagine being told that you can no longer eat food. You have to receive all of your nutrients from an amino acid formula that contains no whole or partial proteins. A formula, I might add, that is so unpalatable that most children that have to be on it have to take it through a feeding tube. Imagine you have to do this because the food that is supposed to sustain you and keep you healthy, makes you extremely sick.

This is how my son and many other children with Eosinophilic Disorders live their lives each day. My son suffers from Eosinophilic Esophagitis (EE). EE is characterized by inflammation of the esophagus with an abnormal number of eosinophils. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. In my son’s case the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case, but my son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day, and vomiting after eating as well. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.

EGIDs are considered rare diseases, but are on the rise. According to an article, “Looking Back on 2009” by Wendy Book, MD in EOSolutions Winter 2009, [the apfed (American Partnership for Eosinophilic Disorders) newsletter], a recent study estimates 158,700 people suffer from EE and 85,000 people suffer from eosinophilic gastroenteritis and colitis (EG-EC). Also stated in EOSolutions, EE has now been recognized as one of the most common causes of food impaction and difficulty swallowing in adults. Even so, these diseases often go misdiagnosed or mistreated for years due to lack of in depth knowledge of the disease by many doctors and specialists. There is no cure for these diseases, and they require ongoing treatment, management and procedures. The only way to test for and monitor them is by performing endoscopies with biopsies. Many patients are forced to travel hundreds of miles to a facility that specializes in eosinophilic disorders to ensure proper treatment. Therapies include food elimination diets, elemental formula diets and/or medications such as steroids and/or PPI’s. Many families, after getting proper care realize that they can’t treat their child with the one thing that will make him well (elemental formula), because most insurance companies don’t cover it, and the monthly cost can be close to many people’s mortgage payments.

At present, even with the rapid increase in prevalence of EGIDs, the National Institute of Health (NIH) allocates $0 in funding for Eosinophilic Disorders. It is of utmost importance that doctors and scientists are afforded the funding they need for important research that can lead to better lives for the many people and families affected by this disease. I know my son would enjoy being able to blow out candles on a real birthday cake one day, not one made of boxes, but this will only be possible through research that will help find a cure.

Help us celebrate National Eosinophil Awareness Week by spreading the word and visit to learn more about Eosinophilic Disorders or to make a donation.

Tuesday, May 11, 2010

Special Needs Awareness - Follow Up

A few weeks ago I posted an entry on special needs awareness.  My Parents of Special Needs Children support group at church had been asked to do a presentation at the PW (Presbyterian Women) Luncheon on children with special needs.  As we prepared for this presentation, we decided that each of us would give personal quotes that would be displayed on tent cards at the tables explaining our thoughts or a specific situation we have experienced raising our children.  As well as that, two of our members would speak.  The first is a retired special education teacher that gave a brief overview of the vast special needs and disabilities that exist.  She emphasized that only 20% of disabilities are visible.  The rest of these children look just like any other child.  The second member to speak, Eileen Koehler, is the mother of 3, her oldest having Asperger's Syndrome.  I was so touched by Eileen's speech, I asked her if I could share it on my blog.  She was kind enough to agree.

                                                                        Eileen's Speech

Hello, my name is Eileen Koehler. I have been a member of DCPC for a little over a year. I have three boys, Thomas 12, Henry 9 and Owen 7. I have heard many wonderful things about the staff of the DCPC preschool and have witnessed many acts of love and compassion that all the volunteers and so many members give to all the children. DCPC members give so much of their time and talent for our children and I am so very grateful.

I have been asked to speak a little about the special needs children here at DCPC. All the diagnoses that you see on the poster boards were given to children who are members of this church. The quotes are directly from members and express what they have experienced either within the church community or outside. I realize that these diagnoses might seem trendy or new fangled. But let me suggest that we consider all the scientific advancements made in medicine; and how we readily applaud the increased chances of survival for certain types of cancer or the improvements in the treatment of diabetes, and so on. So, logic dictates that we should also applaud the advancements made in neuroscience that can offer better explanations for many child behaviors that were not known before.

Since “special needs” represents many different challenges; from cognitive to medical difficulties, I asked a mother if there was one thought that I could convey to you that would encompass what our families wish and it is this…that because we are human sometimes it is easier to look approvingly at the well behaved, self possessed child and otherwise be judgmental of the child (or the parent for that matter) that is pulling away from their parents’ touch, not responding to their name or seemingly refusing to follow instructions, avoiding eye contact, unusually reserved bordering on rudeness, bumping up in line, or a little moody because they know they cannot fully enjoy a church event due to medical issues. Whether it is genetics or the circumstances surrounding their birth, it is at that very moment when we are challenged to remember they were created by God exactly as they are and they face adversities that, in many cases, are unseen to the naked eye. I don’t know if Jesus had special needs children in mind when he said in Matthew, Chapter 18-5, “If anyone takes in a child like this for my sake, he takes in me”. But, maybe they are God’s little messengers to remind us that when it is hardest to love, that is when love is needed the most. It could be God’s way of asking us to meet that challenge and so these children are a gift from Him to bring out the best in ourselves. I remember when a physician very bluntly said that more was going to be expected of us as parents. More patience, different parenting methods, better understanding of child development, more informed about alternative educational techniques. I felt so angry….I think of myself as average and I didn’t want the expectation of being some bottomless pit of patience and a possessor of tremendous insight into child behavior. I was prepared to be a slightly improved, lovingly well-intentioned, but flawed parent much like my own mother! Even siblings of special needs children sometimes have difficulties because so much attention is given to one member of the family. They cannot articulate what they feel so they may act out in public. There is a story for all this, we landed in Holland.

If you had the chance to read Emily Pearl Kingsley’s “Welcome to Holland”, it expresses very well what our lives feel like. When you realize your child is different or when you officially receive a diagnosis, Kingsley likens the experience to having your vacation plans drastically changed from a wonderful trip to Italy to unexpectedly landing in Holland…permanently, forever. The portion that resonates with me in relation to religious faith is “But everyone you know is busy coming and going from Italy and they’re bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That is what I had planned. The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss.”

That is from the viewpoint of a parent; my feelings of loss…a bunch of teenage boys coming over to the house to hang out with Thomas. All the parents here of special needs children can tell you something about their lost dream. And make no mistake, as those quotes show; we have some painful stories to share. But we also are adults and have our faith and each other to help sustain us. We need and appreciate any support we receive from all of you. However, that passage also can represent the feelings of the child who is, or will someday be, cognizant of their separateness from their peers. What about their lost dreams of party invitations, play dates, having their name called in a friendly way to join a game, having a girlfriend or boyfriend, meeting up with a bunch of kids after a movie and eating in the mall food court…but can’t because they need a special diet. They spend a lot of time at doctor offices and therapy sessions. They too can see the disapproving looks when they “don’t fit your idea of normal”. For them, like landing in Holland “that pain will never, ever go away”.

So I think to myself, maybe it is not about what I need but what our children need from DCPC, they need you. As parents we can give them all the love we have but we won’t always be there during some of the most challenging moments of their lives whether in the classroom, on the school bus, on the playground and further on in their lives when they are in college and in the workplace. It is now, in their youth, their experiences here with you at DCPC that the development and growth of their faith in Jesus’ love, as His love is expressed through your kindness, that is going to be so very crucial for their future. Because it is this very faith they are going to need when they try to find their way in a society that can lack inclusivity and even be outright unkind. They are going to need strong religious faith to sustain them when they witness all the wonderful experiences other children continue to have in Italy; the times when they feel alone and rejected, when they are tired and faced with numerous medical procedures, when they feel set apart because they need special classes to help them keep up with their peers socially or academically. So besides their own families, where else will they experience the welcoming and unconditional love of Jesus, if not here at DCPC…from all of you? We know that they can find sanctuary here and can truly believe in the love of Jesus Christ through each of you and your family’s patience, your smile, and your kind words of encouragement.

I would like to conclude with something from Matthew, Chapter 18- 10, “Do not think badly of these little children. I tell you this. They have angels in heaven. And all the time their angels can see the face of my father who is in heaven.”

Thank you Eileen for sharing this with us.  It truly gives an insight into the feelings and thoughts of us as parents of children with special needs.

Tuesday, May 4, 2010

Eos Awareness Week May 16 - May 22

Our son, Andrew suffers from an Eosinophilic Gastrointestinal Disorder. May 16-22 is National Eosinophilic Awareness Week, and we would like for you to join us in raising awareness.

Take a minute and imagine a life without food. Think about a life with no pancakes, no cheeseburgers, no birthday cake, no cookies, no morning coffee, or no sweet tea, nothing to chew on for breakfast, lunch, or dinner. Your nourishment comes from an elemental formula (which tastes like it sounds) made up of amino acids and no food proteins. Can you imagine how a holiday meal would be? Could you imagine a life without food? What if one of the things (food) that is supposed to sustain your life makes you severely ill?

That is how many children with Eosinophilic Disorders live every day - without food.

May 16 through May 22 is National Eosinophilic Awareness Week. Eosinophilic Disorders are somewhat rare white blood cell disorders where the body misinterprets food as if it were a parasite and sends eosinophils, a type of white blood cell, to attack parts of the body.

Our son, Andrew suffers from Eosinophilic Esophagitis, the most common of these rare diseases. When he eats certain foods or is exposed to environmental allergens, his body sends eosinophils to his esophagus where they attack and damage the tissue. This disease causes chronic chest and tummy pain, vomiting, gagging, and other symptoms for him. There is no cure for eosinophilic disorders and no good treatment. The current treatments are steroids and/or the elimination of foods (in his case all foods) from the patient’s diet. Andrew is currently on an elemental only diet.   He gets all of his nourishment from elemental
formula. He has not had a scope free of eosinophils or damage to the esophagus, therefor he has not
been able to add back, or trial, any foods.  Very few doctors are even aware of the disease or how to
manage it. Andrew regularly goes to Levine Children's Hospital  for endoscopies with biopsies, tests, and
doctor appointments.

At this time, the National Institutes of Health designates $0 in annual funding for research for Eos Disorders. Fortunately, some Congressmen have stepped forward and are trying to help change that. However, we need much more congressional support to fund the research that is needed to advance the management of the disease and ultimately find a cure.

You can learn more about Andrew's story and EE at my blog

If you would like to learn more or make a donation for research in Andrew's
name, go to:

If you would like to participate in National Eos Awareness Week, here are some things you can do:

Sunday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.

Monday, May 17: Wear hot pink or purple (the color of eosinophils in biopsy slides)

Tuesday, May 18: Hand out dum dum suckers to your friends and coworkers. Many kids who have Eos disorders cannot eat anything with food proteins. However, dum dum suckers are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Wednesday, May 19: Please send emails to your Congressmen reminding them that this is National Eos Awareness Week.

Thursday, May 20: Contact me if you would like to sample the elemental formula that Andrew has to drink each day.

Friday, May 21: “Eat like Andrew for a Day Challenge”. Even though Andrew can only have elemental formula, for today, we will pretend he has a few safe foods.  Following is an example of a diet for a child with Eosinophilic Esophagitis, so on this day, do not eat anything but grapes, potatoes, pears, pork, rice, and carrots. Do not drink anything other than regular koolaid or water. Make sure you read every word of all labels, and there’s no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances.

Saturday, May 22: Take a few minutes to let Andrew know, through a comment on my blog (, how the “Eat Like Andrew for a Day” challenge went for you.

Thank you for your time,
Ginny and Greg Barton

Friday, April 23, 2010

Learning Disabilities and Anxiety

Anxiety, as defined by Mr. Webster, is an abnormal and overwhelming sense of apprehension and fear often marked by physiological signs (as sweating, tension and increased pulse), by doubt concerning the reality and nature of the threat, and by self-doubt of one's capacity to cope with it.   Okay, for purposes of this post, let's simplify the definition to extreme or excessive worry that interferes with a child's ability to enjoy life or to perform some normal, everyday activities.  Did you know that research shows that children with Learning Disabilities most likely experience higher levels of anxiety than non LD kids?  Makes sense, right? 

According to the article Anxiety Among Kids with LD:  Three Clinical Psychologists Discuss Causes and Symptoms the research they have collected indicates that first signs of anxiety present themselves when these children enter kindergarten.  One of the psychologists, Roberta Goldberg, terms it "the anxiety of not being able to keep up."  The article also goes on to say that at this age most parents are not aware there is a learning disability and just feel the child isn't working hard enough.  This of course adds to the child's anxiety, who already feels as if he/she can't do something they should be able to do.  Most children are not identified LD until 2nd or 3rd grade or later (that is of course if they are identified at all :  30-50% of the population has undiagnosed learning disabilities.(Source - National Institute for Literacy)).  Also, 44% of parents who noticed their child exhibiting signs of difficulty with learning waited a year or more before acknowledging their child might have a serious problem (Source: Roper Starch Poll - Measuring Progress in a Public and Parental Understanding of Learning Disabilities). The article Anxiety Among Kids with LD tells us that before and during the identification time period, their anxiety levels can  be high.  According to these psychologists, the anxiety for the LD children is the highest in elementary school, then subsides some in junior high, and subsides even more in high school.

Monday, April 12, 2010

DisneyWorld with EE

Spring break was going to be a celebration of the end of Andrew's elemental only diet.  He was supposed to have a food added back to his diet by now and we were going to "celebrate" his success of staying on the an all liquid diet for 8 weeks (which has now been more than 3 months) by going to Disney.

Well, as you know, he didn't pass his scope, so he didn't get to add a food...but we still decided to keep our reservations and go to Disney anyway.  We discussed this decision with Andrew because we would be eating at least 1 meal a day in a restaurant, and he would have to go with us and sit at the table and drink his Splash juice box.  This is something we have not done with him since he has been on this elemental diet.  He assured us that it was okay, that he just really wanted to ride the rides anyway--"isn't that what Disney is really about?"

So off we went.  Well of course things can never be easy.  Andrew ended up sick our first day there.  I knew he either had a sinus or ear infection.  I tried calling our pediatrician, but our primary pediatrician was out for the week and the one that was available would not listen and told me we had to be seen in Disney.  Because Andrew is getting ready to start the high dose of steroids and has chronic sinus issues, I felt confident his primary would have called in a prescription, but the doctor in the office would hear nothing of it.  So then I had to find out the dose of the antibiotic pill that Andrew takes because he can not take the liquid or chewable because he becomes symptomatic while on them.  After that we had to find an Urgent Care in Disney.  Believe it or not, Disney does not employ their own physicians.  So to make a long story shorter, we spent 2 hours the next morning (the waiting time alone that evening was 3-4 hours) at Urgent Care for the doctor to tell me that my son had an ear infection, and then for me to tell him the exact medicine and dosage my son needed due to his EE.  But, since we happened to be there, I had them give him a shot of Rocefin to speed up the process so our whole trip wouldn't be miserable.  I do have to say it was interesting because while we were waiting for the shot, the doctor came back in to ask me questions about EE.  He said he had never had a patient with the disease before and wanted to learn more.  Anyway, it would have to be the child with EE to get sick!  He has not been sick once this winter since he began the elemental diet, and boom, go to Disney and right off the bat!

Thursday, April 1, 2010

Public Awareness of Children With Special Needs

As I have mentioned before I am a firm believer of support groups for parents with children with special needs.  Yesterday I had a meeting with one of my support groups for "moms with special needs children".  We have been asked to do a short presentation at a luncheon to spread awareness of children with disabilities.  Many of the people attending this luncheon will have no concept of the vast spectrum of special needs.  Many times when a person hears that a child has a special need, they may automatically think, "Oh, he must have ADHD," or one that I have heard personally, "She goes to a special class, she must be retarded."  But in truth, these can be misconceptions, and there are far more categories of special needs that affect children in our society ranging from autism to learning disabilities, from muscular dystrophy to down's syndrome.

According to the U.S. Census, there are more than 54 million Americans with disabilities in the United States--that is almost 20% of our population.  However, most of those special needs are not visible.  The child looks just like every other child.  Our support group is trying to take baby steps to spread awareness of these wonderful, special children.  We would like for people to realize that things may not always be as they seem...that the child that is "misbehaving" during the sermon at church, continually knocking on the pew despite his parents attempts to make him stop, is not being disrespectful--he has autism.  Furthermore, his parents are not lacking in parenting skills, they more than likely go above and beyond each day to be sure their child is afforded each service he needs to accommodate for his disability.  And that child who is in fourth grade, but her parents still point to the words in the hymnal to her as the congregation sings, she is not stupid, she has a visual processing disorder and actually has above average intelligence.  These two children look just like all the other children.  Sometimes, it makes their disability even harder to deal with.  It can also make life challenging for their parents.

Thursday, March 25, 2010

Allergy Testing For EE--including Patch Testing

Eosinophilic Esophagitis is a rare disease that causes an allergic reaction in the esophagus.  The allergic reaction is caused by white blood cells called eosinophils, whereas food allergic reactions are brought on by immunoglobulin E (IgE).  The eosinophils can cause a delayed allergic reaction, while an IgE response is more immediate.  Some children with EE can have both delayed reactions or IgE responses to an allergen.  Food is usually the main culprit for kids with EE, however, environmental allergies can play a role as well.

There are four different ways to test a child for food allergies.  The most common two are the skin prick tests and the blood tests (or RAST tests).  There is also patch testing and fresh food testing.  Below is a description of each:

Tuesday, March 16, 2010

Vision Therapy

Boy, getting Madison to read is about as easy as asking someone to jump into shark infested waters.  As I mentioned before, everything was (and much still is) difficult for Madison.  Trying to teach her to identify the letters of the alphabet or numbers was painstakingly difficult.  We tried singing, coloring letters , tracing letters in sand and whipped cream, lacing letters, making them out of clay, stamping them, making them with our body, among many other activities that I did with students in my classroom that had difficulty with letter and number identification.  Many of these were useless activities that although were fun for Madison, had no lasting effect.  In the end, I'm not really sure how she retained this information, I just know that it took quite a few years.  And then after all that, she was expected to learn how to read...really?  That process was (and is) just as difficult as letter identification.   Her teachers in kindergarten and first grade continued to tell me that there was nothing to worry about, that she was "just a little behind".  However, they had no idea how much effort Madison was putting in to be "just a little behind".  I knew there was something more going on and decided to have her privately tested at the end of first grade.  That is when we learned that she had a visual processing disorder.  She is now in fourth grade.

 It was good to finally have a diagnosis.  We took her out of private school and put her back into public school where she could get the services she needed.  I also decided to get her a tutor so that I could spend more time being "mommy" and less time being the one that was always making her "do school stuff".  During this time, I tried all the reading programs I had used as teacher, as well as purchasing additional ones recommended by various educational specialists.  These are some wonderful programs, but Madison still had trouble retaining visual information and learning basic reading skills.  I was so frustrated for my daughter and would have done anything to make school easier for her.

Saturday, March 6, 2010

Biospy Results After Elemental Diet for Eosinophilic Esophagitis

Thursday morning we woke up and took Andrew to the hospital for an endoscopy and biopsy after 8 weeks of an elemental diet.  My husband, Andrew and I all felt fairly confident going into this procedure, as 90-95% of children that are treated with the elemental diet go into remission.  Between those statistics, the fact that his symptoms had nearly diminished and he finally began to gain weight (5 pounds in 2 months) we were cautiously optimistic that his scope would be clear.

Before I go on, let me explain an elemental diet and why it is used for children with EE.  An elemental diet removes all sources of whole or partial proteins.  This is done by having the child (or adult) either drink, as in Andrew's case, or ingest by feeding tube an amino acid-based formula, such as Neocate or Elecare.  An elemental diet may be considered after a complete elimination diet of positive foods and medications have failed.  The goal of the elemental diet is remission, having symptoms resolve and eosinophils clear (at least below 10).  At that point, the child would begin food trials, systematically adding back one food/ingredient at a time to determine which foods are causing a reaction.

Tuesday, March 2, 2010

Handwriting Woes

"What does that say?"  "Stay in the lines."  "You need to start your letter at the top."  "No, no honey, this is how you hold a pencil"....Do any of these phrases sound familiar?  Handwriting is a struggle for many children with learning disabilities and ADD.  And unfortunately, due to the curriculum demands that have taken place over the past decade, handwriting is no longer a formal part of the curriculum in many states...including ours.  Barbara Willer, the deputy executive director of the National Association for the Education of Young Children has said, "The printing and cursive are taking more of a back seat."  In my opinion, this is such a disservice to children going through our school systems today.

There is a link between handwriting in early grades to basic reading and spelling achievement.  The process of learning handwriting helps with letter recognition, word awareness and sentence skills.  When I would teach my kindergarten students letter identification, I would teach them how to form and write the letter, as well as the sound of the letter.  By giving attention to the links between handwriting, reading, and spelling a teacher can help reinforce achievement in these areas.  This also allows students to translate a visual or mental image of a letter into a written form.  I would also teach the proper grip of the pencil at this time.  As little as 15 minutes a day of handwriting instruction has been shown to be beneficial, and as noted, it does not (and should not)need to be a stand alone subject.

Handwriting instruction is such an important part of our children's education.  Especially children with special needs that may have difficulty with fine motor skills, visual processing, or attention.  For any child, without proper instruction, they are just drawing the letters, but it is not automatic.  With instruction and practice, they are able to form good and consistent habits.  This is important because it allows them to focus on the content of what they are writing, not how are forming the letters as they write.  If they have not learned these good habits and it is not automatic,  they may lose their thoughts before ever getting them on paper.

Tuesday, February 23, 2010

Taking Care of Yourself (as a Parent)

Tomorrow is Wednesday.  I look forward to Wednesdays and dread them all at the same time.  It's one of those days when I just don't stop, and by the end of the day (sometimes by the middle of the day), I just want to crash. 

A Wednesday at our home starts at 5:45 am.  I start getting ready, because this is my volunteer day at school, then I wake up the kids.  It is my day to carpool because I volunteer in Madison's class at 7:00 am.  I am usually in her classroom until 7:45 or 8:00, then leave to help in the media center until 9:00.  At that time I go to Andrew's classroom to volunteer until 10:15. 

I cherish the time I get to spend in my children's classrooms.  As a former teacher, it enables me to use my skills, but also be a part of my children's education.  It also allows me to see how both of my children are coping at school with their different needs.  Madison and Andrew are always so excited for me to be in their rooms.  I know this will not always be the case, so I am savoring it while it lasts.  Even so, this is the beginning of an extremely taxing day.

Sunday, February 21, 2010

Elimination Diets for Kids with Eosinophilic Esophagitis

Our world revolves around food.  Most events-- family and friend gatherings, holiday get togethers, birthday parties, class parties at school, after game celebrations, special treats for positive reinforcement, and just having a nice meal, all include food.  Food is something we all have in common.  We use food as a way a to socialize with family, friends, even co-workers and acquaintances.

What do you think you would do if one day you were told you could no longer eat your favorite foods.  Let's say you really enjoy that bowl of Corn Flakes with a nice cold glass of milk each morning.  Or you look forward to that steaming cup of coffee with cream.  Perhaps you really enjoy eating yogurt and a bowl of fruit, say strawberries or grapes for lunch.  And how about that grilled chicken or salmon for dinner with a nice roll.  And if you feel like it during the day and don't want to snack, you might grab a piece of chewing gum or suck on a mint.  Now imagine that you can't eat any of these items among many, many more.  How do you think you would react?

So many children with EE are on either elimination or elemental diets.  This can be such a scary, frustrating and overwhelming time for these children and their families.  When we found out what foods Andrew was first going to be taken off, (wheat, chicken, milk, fish, and treenuts) I remember feeling devastated, overwhelmed and so sad for my son.  However, at the same time, I was hopeful that this diet was going to put us on the path to remission.  But my feelings were not the feelings that were most important...there was this 6 year old boy that was being told he was not going to be able to eat his favorite foods anymore.  No more milk, ice cream, cheese, bread, and so many more things that you would never imagine that have these ingredients hidden in them.  Going to restaurants would have to be limited, birthday cake at friends parties was a no-no, he would have to bring his own snack to his basketball games, and on and on and on.  So I asked Andrew how he felt about having to go on this new diet and his reply amazed me. "I'm a little bit sad and a little bit happy.  I'm little sad because I wont be able to eat some of the food I like, but I'm a little happy because I will get to try new foods."  He about brought me to tears.  What  a mature response for a little guy, and how blessed we are to have such a wonderful son.  So then it was my job to do research, buy cookbooks and learn how to change his diet and make his food, as well as our entire family's dinners "Andrew safe".

Thursday, February 18, 2010

Homework with a Learning Disabled Child

Raise your hand if you like to do homework.  Hmmm, I wonder how many people raised their hands.  And that's probably for the "average" person.  Now imagine that you have a learning disability and the homework that takes your friends 30-45 minutes to do takes you 2-4 hours to do.  This is what it is like for many children with learning disabilities, including my Madison.  Then add 45 minutes of reading on top of that.  Sound like much time to be a kid?

On an average day, Madison gets home around 2:15.   She comes in the door, puts down her bookbag, takes out her binder, gets a snack and sits down to begin her homework.  She has a reading and math pack for the week, as well as spelling, vocabulary and usually either a story from her reading book to study for a test on Friday, or a novel to study.  The reading pack consists of worksheets that include passages that she has to read and then answer questions, vocabulary, grammar, etc.   Reading the passages and worksheets takes her twice as long as most children.  When she needs to write answers down, we have to go through her answers together,( not for the content, but for the spelling) edit, and then she has to correct it.  Although she loves math, it can be time consuming and difficult for her as well for the same reasons.  For these reasons I have to be by Madison's side for the duration of her homework.  By the time we finish her homework it is dinnertime...anywhere between 5:00 and 6:30.  And let me assure you that she is not the child that keeps getting up, doesn't focus and fidgets.  She is determined to get it done because she wants to be finished.  That's not to say that some afternoons are not interrupted with tears because she is frustrated that it takes her so long and she has so much to do.

Sunday, February 14, 2010

Andrew's Food Free 8th Birthday

Wow! My baby is 8. Birthdays are always such a big deal for kids. They anticipate their party for months...the cake, who they will invite, what the theme will be, the cake, the treat bags, the games, oh, and did I mention the cake?

Well, cake means food, and this posed a challenge for Andrew's party this year due to his Eosinophilic Esophagitis (EE) and elemental diet. Did no food have to mean no cake? It is our tradition to have birthday parties at our house. The kids choose their theme, I frantically come up with activities and snacks that go along with said theme and of course bake and decorate the cake myself. Add kids, and voila...birthday party.

But what happens when you are celebrating a birthday for an 8 year old boy who has been taken off all food (except pure sugar). I have to say my husband and I were not entirely thrilled with the prospect of planning Andrew's birthday party this year. As we thought about what he could do, we mentioned having a bowling party to him. We thought this may be a venue that would be less focused on food with all the excitement and activity going on. Andrew was excited by the idea, especially when we mentioned that they would also be able to play laser tag. Okay, party planned for me...the bowling alley takes care of everything. Boy is that strange for me.

Now that the party was planned, I just couldn't stand the idea that Andrew wouldn't have a cake. So I decided that he would have a cardboard cake made out of individual boxes. I then painted the boxes the best I could to look like a cake. I found "Happy Birthday" candles attached to toothpicks that I inserted into the boxes so that he would have candles to blow out. Inside each box was a sandwich bag of home spun, plain sugar cotton candy. As I mentioned before, the only thing that he can eat is pure sugar. So he is lucky enough to have a cotton candy machine so that I can make him "safe" cotton candy.  (An alternative to using cotton candy if you truly want a "food free cake" would be to use the boxes as the "goodie bags" and fill them with fun treats for the kids.)

I did not tell Andrew I was going to do this. He knew he couldn't have a cake, and being the trooper that he is, he was okay with that. Andrew was excited when we finally revealed the cake to him, and he realized that he would have candles to blow out. I'm not sure all of his friends were thrilled with my creation and the contents of their boxes, although they were all polite and understand Andrew's diet. However, making my son happy and feel somewhat "normal" on his birthday was my main goal. If I accomplished that, then nothing else matters.

Happy Birthday (really tomorrow) Andrew! I love you!

Just another aspect of living with EE.

Wednesday, February 10, 2010

Eosinophilic Esophagitis

Boy, this is a hard topic to write about. I still don't understand all the facets of the disease myself. For that matter, neither do the doctors.

The definition of Eosinophilic Esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. Okay, so what is an eosinophil (eos)? It is a type of white blood cell that is an important part of the immune system which helps fight off certain types of infections (among other things). Many problems can cause high numbers of eos in the blood, but in Andrew's case it is caused from food and possibly environmental allergies.
As written on the American Partnership for Eosinophilic Disorders (APFED) website,
Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. EE affects people of all ages and ethnic backgrounds. Males are more commonly affected than females. In certain families, there may be an inherited (genetic) tendency.
In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.

Monday, February 8, 2010

Myths about Learning Disabilities

Although I knew for some time that something just wasn't right when it came to Madison's retention skills of written or visual material, when the official result came in, they still completely knocked the wind out of me. I was overcome with emotion and thoughts of what this meant she might not be able to do. Will she ever read as fast as her friends, will she be able to play "Around the World" math, will she go to college? All my knowledge as an educator flew out the door, and I actually went through what I would say was a mourning period.

It took a little while, but I passed that stage (with the help of family) and moved on to the "What do I do to make this better?" stage. After all, she was still the same child that she was the day before, she just had a new "label". Knowing that she had that label didn't change anything, it just now gave me the power to get her all the help and resources she would (and does) need to be as successful as she possibly can.

I was a teacher for 8 years before I had children. My mom was also a teacher. She actually taught self contained special education. So I had experience and knowledge about children with learning disabilities (LD). I have always known the difference between myths of LD and facts of LD. However, it affects you much differently when the LD child is your own. People misjudge and make judgements. They misunderstand and jump to conclusions. So, I hope to clear up some of the myths about learning disabilities here.....

Sunday, February 7, 2010

A Life With Eosinophilic Esophagitis -- Andrew's Story

Andrew is a gifted, sweet, all boy 8 year old. The day he was born was another one of the most precious days of our lives. Besides the fact that he was huge, 10 lbs. 9oz. he was perfect. Madison fell in love with her "Ohjew" immediately.

Andrew was an extremely fussy baby. That may actually be an understatement. He cried most of time and spit up constantly. Madison had never spit up, so I didn't realize that this might not be normal. Finally when he was about 4 months a friend told me she thought he may have reflux. So I spoke to the pediatrician a couple of months later and she sent us to a pediatric Gastrointerologist (GI). He agreed that Andrew may have reflux, said babies usually outgrow it by 9 months and put Andrew on some meds. By 9 months he still had not outgrown the spitting up and was still quite a fussy baby. We went back to the the GI, who encouraged us to continue the medication, but now informed us that most babies outgrow reflux by age 12 months.

By 12 months Andrew would still spit up and could still be fussy. I would (and still do at times) call him lovingly, my temper tantrum baby. After he turned a year, we stopped giving him medication. The spitting up eventually began to subside around 18 months. However, during this time he would have chronic sinus infections and seemed to stay sick most of the time. He was (and is) prone to getting croup as well. I remember many nights sitting in the bathroom with the hot water running to produce steam, then either taking him outside in the freezing night air, or putting his head in the freezer if the temperature outside was not cold enough.

At one point the ENT told us to take him off all milk products to see if a milk allergy was causing his sinus issues. We did this for a month with no results. He spent a good portion of his first 4 years on anti-biotics.

Friday, February 5, 2010

Madison's Journey--Living with a Visual Processing Disorder

Madison is a bright, sensitive, caring 9 year old girl who is growing into a beautiful young lady. When she was born, as most mothers say, it was truly one of the happiest days of my life. She was a wonderful baby...always happy and smiling. She met most of her milestones on time, although she didn't crawl until she was about 10 months old. However, she walked at 12 months and kept cruising along. She talked early, had a large vocabulary, but did have speech issues with articulation. She started speech at age 3 and "graduated" fairly quickly.

She began preschool at age 2 and absolutely loved it. She enjoyed the "play" based program and grew socially and emotionally. During the next 2 years she continued in this program and blossomed even more. She loved having books read to her, singing songs, coloring pictures and dancing around. As a former kindergarten and first grade teacher, I knew how much emphasis was being placed on kindergartners knowing their letters so I began to casually introduce the letters of the alphabet to Madison. This was an extremely difficult task for Madison. She may remember one for a minute, then forget it the next. She may remember one for a day, then forget it the next. She may not even be able to tell me what a letter was 2 seconds after I had told her the name of the letter. So, being the teacher that I am, I began to try all of the "fun" things that I used to do with my students. We made letters out of play dough, we wrote letters in whipped cream, I had her trace them on sand paper, lace letters with yarn, write them in sand, make pictures out of them, etc. But no matter what we did, no matter what had worked with most of my students, Madison could not retain letter names...please do not get me wrong, we did not do this daily or even weekly. We would just do this periodically until she reached kindergarten. However, this is when I realized that something just "wasn't right".

In the fall of 2005 she began kindergarten. She struggled to learn her letters. My husband and I conferenced with her teacher who said she needed to work on letter identification, but when asked if she thought there was a problem she assured us everything was fine. Madison changed schools in the middle of kindergarten and started her second semester at a private school. She was still having difficulty with letter id, but the teachers assured us once again that this was nothing to worry about. Meanwhile, at home, we were working diligently to try to get Madison to retain her letters...not an easy task. She stayed at this school through first grade with the same feedback from the teachers. She is a little behind, but it is nothing to worry about. And let me tell you, as a teacher, I was asking, "Do I need to be concerned?" The answer was always "No".

In many cases, well behaved girls fly under the radar when it comes to learning disabilities. They follow directions, they can be quiet, and in Madison's case, she has a strong work ethic, so she is always on task. Well, at the end of first grade I told my husband that I knew there had to be something going on. She was different than any student I had taught and we needed to get her the help she needs. Most private schools do not have testing, so we decided to have Madison privately tested for a learning disability. As it turned out, she has a visual processing disability. This effects many aspects of her life and education.