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.


Friday, February 18, 2011

Over due post...

Where do I start? The last week and a half has been a crazy one. RSV is here and everyone but Gary has had the horrible, (and I Mean HORRIBLE) Flu. So I havn't had as much time to post about the tests and such also happening in the midst of the flu...On Tuesday Jaxen had his scope. We were worried it wouldn't happen because his asthma has been bad. We did not do the prescribed round of steroids because we wanted to get the most accurate results we could. Jaxens anxiety about the dr the past year has made us prepare for certain situations a little better. We decided to give him some verset before the scope so he would be relaxed. Not only was it aqward to see him so out of it but slightly entertaining I must admit... It went Perfect. He was happy as pie no explosion of petechia, sobbing, screaming, or fighting. Instead he was giggly and waved bye at me as they took him into the procedure room. What a difference it made for us both. I am so glad we did it that way. When Dr Harnsberger came out she said the pictures actually looked great much better than Tielers. but she wanted us to wait for the biopsy. This morning she called with Jaxens results. 15! Only 15 esoniphils! GREAT! So does he not have it? I guess having zero is normal but because they are so low and not damaging his esophagus we don't need to do the elimination diet like Tieler is doing. Instead we need to remove the allergens ( beef, chicken, corn, and white potatoe) along with avoiding as many of his environmental, pet, and dust allergens as possible. That is not all she continued to say...(boo) They also discovered Jaxen has a severe enzyme deficiency. A Lactase deficiency I guess some people with a lactase or lactose intolerance have a number of 24 or up to 58 she said Jaxens was 1.9 (non existent) I think 60-70 is normal. She said he did have some damage in his stomach and intestine from the fermented un digested Lactase. So we MUST completely remove lactase from Jaxens diet as well. And give him some supplemental nutrition as well. Hopefully for Both Jaxen and Tieler it won't be a permanent requirement. I just want to get them well. Completely changing their diets and medications and caring for their medical needs is overwhelming, I feel like I am in quicksand and I'm always right underneath the surface with and arm out or something... This week as been paticularly hard as well because of the Flu. We don't do flus well her there is no simple runny nose at our house. Poor baby Boston is the most effected. Poor guy will soon be getting ear tubes like his big brother and has been getting Rocephin shots all week. He has been going in to the suction clinic sometimes twice daily. Hopefully it will keep him out of the hospital! He is still so sweet, even though he is miserable. I am so lucky to have such a cake baby.
On a more positive note.... I have found a super easy delsih pancake recipe at whole foods that Tie can eat! Jax can't because of the potato starch in it but it is called "Gluten Free Dreams" The brand is Cherrybrook Kitchen. I knew they would be good just smelling them cook. They are great! You just add rice milk and vegetable oil.... Worth every penny! Here is the website. They have tons of foods for kids with allergies... LOVE it! http://www.cherrybrookkitchen.com/
ALSO.... the Choclate Hemp ice cream at Harmons rocks... tie totally Digs it!
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