Food 4 Thought...Our life with EE: Another day at the allergist...

Our story........

I have three of the cutest kids you have ever seen. Jaxen 5 Tieler 3 and Boston 8 months. I have started this blog mainly for me, to be able to vent, cry, share, brag, and help myself and others families that are in the same boat. After YEARS of struggling, doctors, specialists, prescriptions, hospitalizations, Test after test. We have a diagnoses. Eosinophilic Esophagitis. I hope in sharing our stories, struggles and triumphs we can connect with one another.
So here goes... I will give you the shortened but still long version starting in 2005. Jaxen, the sweetest most loving five year old. My sunshine... Reflux baby, diagnosed with Asthma at 8 months, GERD, "Toddlers Diarrhea" ( when they don't know why...) Milk intolerance, chronic ear infections led to tubes, severe outdoor and pet allergies, But always happy, good sleeper, good eater, who literally ate anything you put in front of him. UNTIL..... around age 3 1/2 Jaxen began getting pickier and pickier I chalked it up to age but slowly over the next year and a half he completely eliminated all but five foods from his diet, My happy baby also seemed to be very anxious mostly associated with meal time. We had tried everything you could think of to just get him to eat. I complained to the pediatrician and begged for help. He also had begun vomiting, constantly in the mornings always. I thought at first it was car sickness. until it began happening on a weekly sometimes daily basis. I was tired of both Jaxen and myself leaving the dinner table in tears. Nothing worked. He is such a good boy, listens to me, does everything I ask the only thing we ever battle over is food, why? Finally the pediatrician had him come in for a well child check to address all my concerns. Jaxen's growth had gone down 45% in the last year. This was cause for concern and off the Gastroenterologist and feeding specialist we went. First we saw the feeding specialist diagnoses: Severe childhood eating disorder who needed feeding therapy and the Gastroenterologist who said possible EE. And that's were we are at today with Jax.
Tieler our princess, my singer, dancer, tiny and tough, my angel...... Tieler was born in June 07. She weighed in at 5 lbs 2 oz she was alot smaller than they thought she would be. Tie seemed healthy though until we got home. Tieler would spit up everything she ate. Her first hospitalization at 1 month for possible Pyloric Stenosis. Negative but a significant case of GERD. Our 2nd hospitalization another month later for inability to maintain weight and projectile vomiting. Third hospitalization another 3-4 weeks later for C diff which I guarantee she contracted in her previous hospital stay. Tieler was so sick and was very close to a feeding tube after about ten days at Primary children’s she finally began to keep in about an oz. of formula. When we finally left the hospital. Tieler was 5 months old and weighed in at 9 lbs 1 oz. this hospital stay was followed up by allergy testing. The findings were positive for Milk, egg, wheat, peanut, and tree nuts. We had been poisoning her... Tieler grew slowly she was on Nutramigen which she could tolerate, and very little food. Tieler didn't sit till 11 months and didn't walk till 17 months. She had global delays but was finally doing ok. Tieler had a physical therapist and then speach because she didn't talk hardly at all. Her immune system sucked and she like Jaxen; got sick all the time. At 18 months out of the blue Tieler had a massive seizure. Sleep deprived EEG was normal her therapist continued to express concerns they felt Tieler was having absence seizures. Again we had no answers. As she grew she continued to add on food allergies. They changed, came and went, and continued to restrict her in so many ways. During the fall of 2009 we started to notice randomly that she had symptoms of asthma, but it was so different than Jaxen’s I had spoken to the allergist who gave her a script for a flovent inhaler and I didn't open the package. It was rare and so different from Jaxen that I assumed it was me being paranoid. Was I ever wrong... In Dec. 2009 Tieler had a massive asthma attack and stayed in the hospital for 4 days then went home on oxygen for two more weeks. Since then Tieler had another seizure in school this time, and seemed to be complaining almost constantly of stomach aches, and throat pain. She has had SEVERE excema since birth and I just knew I had to put the pieces together. So I started researching again. To me it all had to be somehow related... and most of it was. I found some pages on kids with EE and I knew from that point on I had found it.

Wednesday, February 9, 2011

Another day at the allergist...

Today was rough. My poor Jaxen has so much anxiety. We planned on the allergist today to do some expanded testing on both Jaxen and Tieler. I fought with Jaxen this morning to get him to eat a whopping six mini pancakes... I felt bad because only 30 minutes later he threw it all up. Feeling defeated by 9:00 am is never a good thing. When we got to the allergist Jaxen went first. He lost it. It took me and my mom to hold him down while the nurse moved as fast as she could pricking his back. It is painful to watch and obviously painful to be the one getting pricked. He freaked out so badly that he had broken blood vessels (petechia) all over his eyes for head and temples. :( I felt terrible. Still do every time I look at his little face. Hopefully they go away soon! As for the allergy test.... Jaxen tested positive for Chicken, Beef, Corn, and white potato. Corn is so sad cause it is in everything especially everything that is sweet. Candy is my bargainer not for long...He is suppose to be getting his scope done next Tuesday. He is having a flare up of his asthma and the allergist insisted I give Jaxen some prednisone. I am not going to do it though; I am hoping that nebulizing can get him through it. If we give him the steroid it will be months before we can scope again. We just can't risk it. The GI said do not give him the steroid, to wait till tomorrow morning to talk to her. Hopefully we have some other options cause if it is worse they won't sedate him anyway? I hope were making the right decision. He told me last night that food didn't make him sick but it just got clogged in his throat. :( How sad is that? Tieler also had an eventful day. She is doing well asthma wise... Her skin is doing alright it could still use some improvement but it's not horrible. She tested positive for some new allergies today too. The most upsetting was SOY! She has always tested negative for soy. Always... and today positive along with chicken, oranges, and oats. So her new allergic list after today is: Milk, eggs, peanut, cashew, pistachio, hazlenut, rhye, oats, black walnut, oranges, chicken and Soy. Wheat still said negative. I was feeling like wheat was a culprit for the high numbers on her scope since she had a prior positive prick and RAST for wheat but it has shown negative since she was 18 months. So maybe it is the large amount of soy and chicken? Who knows EE is crazy and it changes all the time! I came home feeling like crap. I need to pull myself out of this slump so I don't rub off on my poor kids that are the innocent victims of EE but my heart hurts. We have a month of hell before us. I already feel done.... We decided we MUST move. I love my home I feel safe. It is clean, and big, and beautiful. We cannot afford it though- with the new cost of the supplemental formula and the medical bills. We have been looking like crazy the last few days and there is nothing out there. I feel hopeless. Tomorrow is a new day. I hope it is better than today. BTW, I am so lucky to have kids that aren't full of Cancer. A warm roof over my head, a husband who loves me and is going through this every step of the way by my side, My awesome and amazing mother... wow I can't say enough about her. She is the best mom ever!!! And my GREAT FRIENDS and FAMILY. Reminding myself of the positive things is helping me right now... I am surrounded by LOVE. Thank the lord. It is what will get us through this!