Sunday, October 31, 2010

Finding a team to work with

We are proud to announce at Hayleigh's 16 month check up she was in the 91% for Height and 74% for weight despite her medical formula only diet! Her pediatrician is always surprised at how well she does for just being on an amino acid based formula.
Over the course of our journey I always felt like the over concerned parent and the last few months I have become somewhat laid back where as her pediatrician is now the one overly concerned. Which I am not complaining about at least now we have someone who is really listening and paying attention. So I brought up the fact that we do not have a team of Drs. Most kids with MPI and reactions to most food have at least a Pedi, GI and allergist, but have not found a GI or allergist knowledgeable about PI or EGIDs here. Her Pedi, Dr. B said she would work on it and I was surprised when I got a call only 1 hour after getting home from our appointment saying she had set up for us to see a GI who said he knows about MPI and EGI disorders. We have seen this GI before but Hayls was only 4 months old at the time and he said she didn't have GERD (which she does), but we are willing to see him again now that she is older and hopefully get some insight. If for some reason we do not get what we are looking for support wise Dr. B said she would be willing to look for someone else. Hopefully she will also contact the allergist I heard about in Stanford. We are keeping our fingers crossed and if not we have some work to do to get a good team of Drs going.

Hayleigh's story

Hayleigh was born after 28hrs of induced labor. She weighed in at 7lbs 9ozs and 19 3/4 inches. Once she was placed on my chest it was evident she was having trouble breathing. She was whisked away to the NICU for about 8 hrs and eventually was doing well on her own. She had trouble latching on the breast in the hospital and this continued for several days. Some feedings she would stay on the breast other times she would pull off and cry. I was told her latch was fine and to just continue trying. By day 3 she had lost over 10% of her body weight and we had to supplement with formula. For 4 weeks I pumped and tried to build up a supply while supplementing her with regular formula. She became a fussy baby crying between feeds and even giving trouble to drink from the bottle. She would only take 0.5 to 1 oz at a time and my constant goal was to feed her while she scream and arched in pain. Taking a shower or eating was impossible. My days were consumed with consoling her constant pain and crying and trying to get her to eat. By the time she was 6 weeks old I was convinced something was not right and showed up at her Pediatrician asking about reflux. We were sent away with Zantac compounded liquid and told to try it for 2 weeks. Needless to say it did not work. At this point we had switched from regular enfamil to organic earth's best formula to see if that would make a difference. We then tried compounded Prevacid for 3 weeks and still there was no improvement.

By the time Hayleigh was 3 months old she was in constant pain. She would have sandifer's syndrome episodes, constant hiccoughs, a rash all over her body (small red bumps which sometimes would look like pimples or blisters), five or more runny mucusy stools (which if not changed right away would burn through her skin), horrible smelling breath, constant congestion, wet burps sometimes with spit up, stomach pain (she would pull her legs up and scream for hours on end) and feeding was still an issue with only 0.5ozs at a time. It was starting to wear on me and I would cry when she cried. I felt horrible for not being able to make my baby better, I was her mother and was supposed to look out for her and make her feel well again. Our Pediatrician referred us to a Pediatric GI and I felt confident we would get some answers. He took us off the Prevacid and put her on Zegerid 20mg packets. I asked him about switching her formula and he said to try Nutramigen (a formula with partially broken down milk proteins). I agreed but asked about trying Neocate or Elecare (an amino acid based formula where the proteins are completely broken down for individuals with different GI issues). He gave me someElecare samples but said he did not think she needed it. We got a barium study of the digestive tract done and everything looked normal. Hayleigh started to do better on the Nutramigen and Zegerid for 2 weeks then all hell broke loose once again. All the same symptoms returned with full force. I switched her to Elecare and things slowly got a bit better over a period of 6 weeks. Most of the symptoms resolved but some remained, i.e. the not eating well, the sandifer's episodes and pain. We decided to go ahead and get a ph probe done when she was about 4 months old. However the GI wanted us to pull her off the medication for about a week before the test. We refused as she was already in pain and taking her off the medication suddenly would cause an acid rebound (up to double the amount of original acid produced in the stomach) and even more pain. We wanted to make sure the medication was doing a good job and once the ph probe came back normal it would show this. Well they ended up forcing us to stop the medication only 24hrs before the ph probe and of course her probe came back normal ( as the medication takes 48hrs to clear your system). After we left the hospital and were on our way home Hayleigh was screaming in pain as the medication had now left her system. The next day we were in the pediatrician's office with me openly crying and telling her we need to try things my way now. She said she was out of ideas and the GI basically told me Hayleigh did not have reflux or GI issues to seek help elsewhere. I asked her pediatrician to prescribe Zegerid 40mg packets as the 20mg packets had more sodium bicarbonate per mg and this alone can cause upset stomach, vomiting and pain. She agreed to write the prescription but refused to manage the medication because I wanted to use the recommended dosing from MARCI kids (Mid West Acid Reflux Children's Institute) and she thought the does was to high. She however agreed to speak with the head of the program at MARCI kids, Dr. Phillips (also the inventor of Zegerid) to check on the dosing. At this point I was so happy to have something new to try I went home feeling a bit lighter even though we were at our wits end. On a side note the bandages used to keep the ph probe in place caused a rash on that side of her face and blisters formed; it took almost 3 weeks to clear. This along with reactions to various brands of diapers seems to point to a latex allergy.

While waiting for the Zegerid 40mg to start working we used mylanta cherry supreme to take the edge off (we had started using it when she was about 3 months old along with the other meds). Within a few days we had a brand new baby and for the first time she seemed to be pain free. Her eating was still poor, but I could at least get 1 to 2 ozs in her at a time. To this day Hayleigh is on a high dose of Zegerid 40mg packets to manage her reflux/ food intolerances. When ever she has a reaction to a food trial we up her dosing until the reaction has passed.

When was 4 months old her pediatrician told us that it was no longer recommended to wait until later to introduce solids in children with allergies so we decided at 4 and 1/2 months to try sweet potatoes. After a few hours she started spitting up more (with her reflux she did not spit up a lot, she has silent reflux), was in pain again, broke out in a rash on her face and body (sometimes with blisters that would last for weeks), developed horrible acidic smelling breath again, acidic mucusy diarrhea that burnt the skin (causing screaming for a few days due to raw skin) and lack of appetite (she would stop drinking her Elecare) among other things. This happened again when we tried apples at 6 months. The reaction time was shorter and within 4 hrs she had big red patches all over her face, neck and trunk along with the usual symptoms. Only this time the vomiting and diarrhea were worse. Since then she has had reactions of varying degrees to all foods we have tried except Beechnut brand jarred carrots ( she reacts to carrots when I cook them). We have failed milk, soy, rice, bananas, apples, sweet potato, pears, peaches, potatoes, parsnips, grapes, strawberry, broccoli, avocados, watermelon, squash, fish, chicken, egg, Neocate Nutra, crackers (a few brands), teething biscuits (a few brands), Kix and Cheerios cereal, graham biscuits, Happy Belly puffs, homemade bread and a host of other foods.

Since birth we have seen her pediatrician more times than I can count on my fingers and toes. We have been to 2 pediatric GI's. She had physical therapy for 8 months for Torticollis, which was made worse do to her GERD and food reactions. She also had feeding therapy as she has issues with certain food textures.

The last 15 months have been eye opening to say the least and I could not have survived it without the support of my husband. Kenny has been my strength when I thought I could take no more. When people judge and tell you hurtful things (even though they are trying to help) he has been the one to ease my mind and remind me that no one knows Hayleigh like we do. No one knows her pain and what she has been through but us and we have to choose what is best for her. Having a baby is supposed to be a joyful event but the past year has been very trying and filled with questions. Our goal now is to move on to get answers.

Hayleigh is a happy healthy very talkative 15 month old who does not look like a child who is allergic to all food. I love her more than anything and even though I wish all these issues will disappear so she can live a normal life, her life will be great no matter what the outcome is. Currently at 15 months she is on Elecare and drinks 5 ozs every three hrs (including night time). She has carrots almost every day and we do a food trial once every few weeks to give her body time to recover. Her diagnosis at this time is MPI (Multiple food Protein Intolerance) and most likely EGID (Eosinophilic Gastrointestinal Disorder). We are not sure what the future holds for Hayleigh and for our family but whatever comes our way we will hold our heads up and keep a positive attitude. Once we accept and deal with her medical issues in a positive manner she will be better equipped to face whatever challenges life throws at her. Our biggest hurdle right now is having to explain to people why she cannot eat food. However with a lot of patience we try to educate people and help them to understand we are not starving our daughter but simply doing what is best for her.