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.


Saturday, February 5, 2011

Tieler was diagnosed with EE on 2/4/2011 her Eosinphil count was 77. And that was on an already restricted diet of milk, egg, peanut, rhye, cashew, black walnut, pistachio, pecan, and hazelnut. And here we are... Jaxens is getting scoped on 2/15/2011 and tie starts her diet and meds tomorrow. I am devastated I guess. I wanted answers so so badly. I have them yet I feel just as terrible. Inadequate, and overwhelmed by the Cost. The emotional and physical cost, and the financial. It is still so new to me. Like a fresh wound. I am still crying, feeling sorry for my children and myself. Wanting all the answers and to just feel for a minute like I can make a happy and normal life for them. And I am scared. So so scared, of trying to find the money for their treatment. How do I teach them at this age that there is so much more to life than food when everything is centered around it? How do I make them understand what is happening? I feel like there is so much that I don't know! And feel like I am questioning my ability as a mother! I want them to have it all. Feeding tubes... OMG I can't imagine having to go that route I am absolutely mortified at the idea.... But getting my kids to even eat this restricted diet is my biggest and first battle, and I am freaked! One day at a time is what I keep telling myself. And I hope to god I can do this and do a good job. My kids are my life. Sickness is not new to us, but EE is. I would love to talk to anyone who knows these feelings, has advice, something to share? a recipe? feel free to email me! I would love it! Thanks for listening.
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