A Learning Disability and Eosinophilic Esophagitis
The elevator to success is out of order. You'll have to use the stairs...one 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.
I am a mom of two wonderful children, both of which have their own special needs. So, I am lucky to be a mom with SPECIAL children!
My daughter, Madison, is 12 years old. She has a learning disability characterized as a Visual Processing Disorder. My son, Andrew, is 10 years old and has a special need of a different kind. He has a disease called eosinophilic esophagitis.
Having children is the most rewarding aspect of my husband's and my life. However, dealing with each of their special needs can be challenging and frustrating at times. Support from family, friends, and other parents that are dealing with the same issues can be a tremendous help to a parent of children with special needs of any kind. I have found some special people to help along our journey that have been both inspirational and educational in my growth as a parent. I am hoping this blog will help others and further help my family on our journey.
Feel free to contact me with any questions, comments, suggestions or just to share your story. It is always nice to know you are not traveling this journey alone. You can email me at:
momwithspecialneedskids@roadrunner.com
First of all, I need to once again apologize for my lack of posts on this site. For a year and a half I had agreed to a full time substitue teaching position. Between that and parenting my two children with special needs, I literally had very little time for anything else, but to remember to breathe. Because of this, I find the article that I am posting about even more relevent.
Below is an article, Special Needs: 3 Emotions it's Okay for Moms to Feel iMOM, from the blog iMOM that I feel is a must read for all parents with children of special needs. We, as parents of these children, often expect more from ourselves than those of children without special needs. As the article states, there is an added layer of complexity to being a parent of our children. Please read the article to find out more about the 3 emotions we are ALLOWED, and have every right, to feel: tired, discouraged and sad, but more importantly, some tips to help us through those emotions.
Today Andrew and I wore our Eos T-shirts to school. We also passed out dum dum lollipops to help spread awareness for these disorders. I was pleased when several teachers asked me what my shirt said and I had the opportunity to educate them, if even just a little, on EGIDs. The student's in Andrew's classroom (and mine as well) were full of questions. I continue to be proud of how well Andrew handles his disease and now of the advocate he is becoming. It is so very important for the people that are suffering from this disease that awareness is spread. Please take time to write to your congress person tomorrow to remind them that this is National Eosinophilic Awareness Week.
Thank you to everyone that continues to support us!
This is a video put together by another Eos family.
Today is the second day of National Eosinophil Awareness Week. My goal was to post something each day no matter how busy I was. I have already missed my goal, but I am going to work hard to obtain it for the rest of the week.
I feel it fitting to start this post with an update on Andrew's status. Andrew began food after 9 months of an elemental diet last fall. He has failed 4 trials by symptoms and had "passed" peaches and sweet potatoes with 12 eos per high power field in January. On May 5 he had another endoscopy with biopsies after trialing pinto beans and grapefruit. To our delight, the results were the best he has ever had...0-1 eos per high power field in all three sections of the esophagus. For a child who at one time has had so many eos that the pathologist could not count them on the biospsy slide, this is truly amazing. Actual remission, even if he is on 60mg of prevacid and flovent each day. What a way for us to prepare for National Eos Week! And Andrew was able to celebrate by adding Lamb to his diet. I wish I could have captured the pure joy on his face while eating that lamb chop so that when he is in the hospital or in pain I could take it out, look at it and remember there will be more days like this.
Please help spread awareness for this frustrating disease so that the children and adults suffering can someday enjoy lives normally once again. People who suffer from eosinophilic disorders can not tolerate food proteins. Many of them that are on elemental diets can only eat dum dum lollipops. Although they are not yet safe for Andrew, he will still be passing them out to spread awareness tomorrow. Won't you join him?
There are few treatment options for our EE children. They can either be treated through diet, inhaled or swallowed corticosteroids, or both. In some cases, these inhaled steroids are the only thing that keeps our children in remission. They have tried food elimination or elemental diets, but have failed until the inhaled steroids that our children swallow were added to the mix. Although it doesn't cure them, it may allow them to start trialing foods, or eating foods they were unable to before. Even though we know there may be side effects, they were not supposed to be as harmful as systemic steroids. The lesser of two evils, and we want our children to feel better and heal.
So when I stumbled across the article Inhalers Linked to Higher Odds of Diabetes in Asthma, COPD PatientsI was less than enthused. It has long been known that oral systemic corticosteroids such as prednisone can cause diabetes, but this is the first time there has been a link to inhaled steroids, said Samy Suissa, director of the Centre for Clinical Epidemiology at the Lady Davis Institute for Medical Research of the Jewish General Hospital.
In a study of nearly 400,000 people in Quebec, the researchers found that inhaler use was associated with a 34% increase of new diabetes diagnosis and diabetes progression. The study observed that 30,000 of their patients developed diabetes over 5 and 1/2 years of treatment, and patients that already had diabetes experienced a worsening of their disease. Samy Suissa reports their findings in the most recent issue of the American Journal of Preventive Medicine. Based on their results, researchers from McGill University and the Lady Davis Research Institute at Jewish General Hospital in Montreal suggest patients should only be treated when there is a clear benefit. What other choice do our children have? Does the risk outweigh the benefit? It seems that we are running the risk of adding just another diagnosis to our already multiple diagnosed children. But again, I ask, what are the options?
At least in the report Dr. Weiss, who is also a clinical assistant professor at the NYU School of Medicine in New York City suggests that the concern should also be directed at the person's lifestyle, eating habits and other underlying causes of diabetes. He concedes, "Yes, we do know that steroids increase insulin resistance and that people treated with steroids require more aggressive diabetes management. But if we don't generally take an approach that deals with the poor quality of food that people are routinely consuming, the incidence of both these diseases will continue to go up at a dramatic rate."
Does that make me feel better? Not so sure. My wish, as I'm sure is yours, is for one of these doctors/scientists to come up with a cure for our children so they don't have to take all this medication everyday, and they would enjoy a life WITH food and WITHOUT pain.
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 again....it has reminded me why I went into the profession so many years ago.
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!
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 did...in 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!
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.
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:
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.
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.
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!
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.
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 apfed.org 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
Store.
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 apfed.org to learn more about Eosinophilic Disorders or to make a donation.
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
eeldkids.blogspot.com
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 (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” challenge went for you.
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!
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:
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.
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".
Below is an article, Special Needs: 3 Emotions it's Okay for Moms to Feel iMOM, from the blog iMOM that I feel is a must read for all parents with children of special needs. We, as parents of these children, often expect more from ourselves than those of children without special needs. As the article states, there is an added layer of complexity to being a parent of our children. Please read the article to find out more about the 3 emotions we are ALLOWED, and have every right, to feel: tired, discouraged and sad, but more importantly, some tips to help us through those emotions.
