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.


Monday, September 5, 2011

Update... Been a couple hard weeks.

Well in my last post I stated that we were struggling with Jaxen's Diet. It had been bad, Jaxens Anxiety and caloric intake were both in bad places. This summer it has been getting progressively worse but I kept holding to the fact that he was starting feeding therapy soon and they would help us. Well our super awesome insurance company denied Jaxens feeding therapy??? SERIOUSLY... I had a major freak out. Like the uncontrollable sobbing all day kinda freak out. I had calls to make but couldnt even keep it together to speak. What ticked me off the most was that they gave us the therapy last year in November, when we could not pay the massive deductible and co payments. So now that we have been maxed out on our out of pocket for months; I had scheduled his appointments and everything and found out the day before the first appointment. I was so devastated, pissed off, and completely broken at the thought that they were not going to help him and help me... I don't get how we got approved last year before all his diagnoses...? Makes no sense! And now he has these diagnoses and the deny? UGH- I am so fearful for him. He was diagnosed with PTSD and anxiety. The PTSD comes from being sick for a long period of time, Food make him vomit so much that now he feels as all foods will make him vomit. He has been down to only one food for the last 5-6 weeks. We have tried everything. The anxiety has also spread to other places and has caused some OCD. He is Six years old! It breaks our hearts to not be able to take away his fear. So the next day... when I could speak a little better without breaking down completely I made calls. I set up an appointment with the Gastr. Dr. Harnsberger and Jaxens Pediatrician Dr. Duffy To help us in one way or another. If we were not doing therapy something needed to be done, He is basically starving himself. After both appointments they decided to put Jaxen on an anxiety medicine to see if it help at all after ten days if he isn't eating a ton, and I mean a drastic difference in calories- he will be getting a gastric feeding tube (G-tube). I have days were I am so upset by this and days were it almost relieves the anxiety over what he is eating.. he has fallen off the growth chart weighing in almost 3 pounds less than he did 2 years ago at age 4. He is currently in the 8th percentile for his weight from the 47th. We have to do something but the idea of the tube is so upsetting I just want him to be a happy, healthy little six year old boy. He is struggling. I am struggling. We are all struggling. I am desperate for a solution to all these issues. It really is sad that the financial burden hanging over our heads keeps us from being able to do the things they need the most. That's what is so heart wrenching. It hurts me more than anything to think that if we had the money their care and health situations would be completely different. We wouldn't be going through this right now. They would be doing so well. Makes me feel like it is my fault they are struggling. They are my responsibility right? Everyone is great at telling us what they need and when but no one can tell us how to cover the kids medical expenses. I wouldn't wish this pain in my heart on my worst enemy. So we will be setting up at time for Jaxen to get his tube next week. Monday or Tuesday. Ill update again soon.
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