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.


Tuesday, May 17, 2011

FINALLY!!! some good news!

OKAY.... So it has seriously been forever since I made any updates... I guess that until Tieler had her scope I didn't feel like getting on. It also took way longer because they had to move it back 4 more weeks cause she had a bad case of bronchitis and the Anesthesiologist refused to put her under. So things have been different. I was super paranoid that Tielers formula was making her sicker and that we would have to switch to a new formula, (Elecare or Neocate) which would have cost us an additional 500-800$ a month (as if 1000.00 a mo. isn't high enough!!). At first her symptoms got better so fast she was sleeping through the night for the first time in her life and her skin started to heal finally and then it started to come back at week ten her waking up and complaints of throat pain. I was so worried and so upset after the scope because her esophagus from the pictures did not look good it had large white chunks (TMI sorry!) all over along with esophagitis. Dr harnsberger told me there was a small chance it was yeast but most likely it was micro-abscesses of eosinophils, and that if that was what it was then she was NOT responding to treatment. I was a mess, a bigger mess than I have been since we got the original diagnoses... :) I was so worried and every thought of hopelessness drifted through my mind.
The what ifs...
1. How willl we pay for the new formula?
2. How do I keep her off a feeding tube? ( we tried the neocate splash... BAD)
3. Will my marriage survive this?
4. Will we have to move again? possibly into the ghetto?(lol I am serious!!)
5. How will we keep her Healthy?
6. What will our life be like?
ETC. and more...
I guess the feeling that for me and Gary both is that no matter how hard we work, no matter what we do we will never be able to relax a little, enjoy family vacations, not stress about money, Move back into a house, feel some sense of security? and not worry about how we will pay this medical bill and for the next 6 days (yes I said DAYS) worth of formula, this is LIFE LONG it will never go away. I feel so inadequate as a mother, Why did God think I was actually capable of such a big Gift and responsibility as he gave me these three beautiful babies? ME? Really? I cannot say I wouldn't change a thing about them cause I would! I would take away this terrible disease and all their pain and discomfort, and restrictions on their life. But for now we are going day by day, and sometimes its good and sometimes its bad, I will take every triumph for what is is big or small and I HOPE each one Gives me more HOPE to keep going on and providing a happy life for my kids!
SOOOOOO the GOOD news? Tie had ZERO EOS!!!!!!!!!!!!!!!!!!!! Yep that means that the TINY amount of food she is eating is safe! Her body is not fighting the potatoes, cocoa puffs and Trix, her formula, and her sour dough jelly sandwiches.... It was a Horrible yeast infection which we are working on clearing out now. and letting her esophagus completely heal. We talked for a moment about food trials but were going to wait for quite a while. I want her to be pain free for once! And most every thing we will be trying is stuff she is still very allergic to according to scratch testing and the RAST. So For now we wait and we will HEAL!
Thats not all my news... as far as JAX he is doing GREAT! he has not gained weight, but he has not vomited in weeks which is freaking awesome for a kid that was barfing daily! I WISH so badly we could afford feeding therapy, cause the kids need it so so bad but its one of those things like fifty others that doctors tell you they need asap. But there's no way to pay for along with everything else that this disease causes. Makes me IRATE! I hate insurance companies they make a ton of money off me a fight me to pay for every stupid thing!
And Last but not at all LEAST.... Boston. So Boston started to freak us out just a little cause he chokes on everything, littlest flake of bread, and his reflux has always been way worse with milk and soy than the nutramigen so Dr. Harnsberger decided that we check Boston at the same time as Tielers last scope! And amazingly... I have one Child that does not have ANY Eosinphils... ANYWHERE! yay! He does have bad reflux but its just normal ole reflux! woohoo! He can start eating everything. It feels so weird pouring milk into his formula bottles, lol I feel like I am putting some poison in them because that's what milk has been at our house! So thats were we are at! I left out a lot of in between stuff but I have too much to do and this post is getting really really long! Peace out>
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