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, March 16, 2011

a Super CRAZY few weeks...

So I haven't been keeping up on the blog the past few weeks we have been really busy with moving. We are officially moved in there is still a good ten boxes to go through but were slowly getting there! We have had some new developments with our EOE. Tieler saw Dr. Gliech The supposed GOD of EOE. He was a nice little old man. Tieler loved his Donald Duck voice. I felt like he had a lot of information. It was kind of nice to hear the words " There is so much we dont know about EOE" Only once the entire visit its so frustrating to have every doctor tell you multiple times a visit they have no idea why this or that is happening. So I guess that was a bonus. They want Tieler to participate in the Research study they are currently in at the U. I don't know how I feel about it because the dosages of medication are CRAZY high. 880 MCG of Flovent a puff (2-3 a day). Right now Tie is on 220MCG per puff and that is high to me. I don't know enough about the program to decide yet his coordinator is suppose to be calling me to discuss the study in more detail. We would like to see what her next biopsy says before we make a desicion too. Tie is still very syptomatic. They decided to give her a round of steroids to wipe the esoniphils out since she has been not feeling well. I keep expecting her to feel great, and gain weight, at least the last pound she has lost since her diagnoses, but she still hasn't gained it back. Dr. Gleich wanted Tie to be on the Elecare instead of the Vital Jr. I had an apt. with Dr. Harnsberger the next day and told her that I was upset about that because I didn't know how we would pay for it and what she thought, Not that we wouldn't find a way. It just broke me to think I had to try to turn our world even more upside down that it currently is to make it happen. She disagreed. She said Tieler needed more formula so we could at least get the pound back she lost, so she is drinking Three a day now. She told me that she was a formula expert and felt like the only difference from the Elecare and the vital jr were that elecare tasted horrible and costed ten times as much. Right now we spend 160.00 every week for just Tielers formula. And about 70.00 a month for Jaxens. I know that will go up but I have heard nightmare stories about the elecare and neocate.
As far as Jaxen. He is doing a tad better. Since we removed milk there has been less vomiting. You would think it would stop all together but they are hoping after the steroids that he will be doing better Jaxens eosinophils are very different than Tielers. He has 55 in his stomach I guess 40 is normal. And he had 28 in his esophagus, none is normal and 40 in his small intestine which 35 is normal... Weird, he has more than normal in each area, but barely. He has mild damage in each area. His lactase deficiency is 1.9 which is terrible. They think that most of the vomiting comes from that but Because Jaxen's diet is so broken taking Jaxen off all the foods he barely eats would be more detrimental to his health than letting the smaller numbers of eosinophils be present. So right now the plan is to randomly treat with steroids to wipe them out when needed. normally that would be the band aid effect but Jax needs the band aid to be able to feel well enough to regain an appetite and develop the ability to eat normally. It is a slow road but I just want him feeling better by the time kindergarten stops. Kids shouldn't have to feel this way it breaks my heart to see them in pain. He is still throwing up a cpl times a week but it is better and has been having less stomach aches. He is not doing as good with drinking his supplemental drinks but were trying. Just have to be sneaky!! he is also on a probiotic which is helping and his daily steroid. still a work in progress....
As for our family in general. We moved from our 3 year old 3600 square foot beautiful home to a 1000 square foot apartment... yes I said apartment....I feel like we reverted 10 years... its really hard to adjust for all of us. Everything is brand new. I love my new washer and Dryer... that's about all. Lol I really hope that we do well here and can last this short lease. I hope that we save enough money to pay for the kids medical bills and formulas without destroying ourselves financially. We have already been there with the medical bankruptcy... I am not going to spell check this post because I am too lazy... and have to go get the kids from school. Sorry I do know how to type... lol I swear.... BYE
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