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.


Sunday, August 7, 2011

Update slash vent post..... It has been too long.

I have not blogged in forever. Too much has been going on. I have so much to say so beware... This post is gonna be a DOOZY. I guess I have to start from June... June has SUCKED, I had been having a bunch of random health issues myself that have caused me to be pretty sick so sitting at the computer blogging, or getting out of bed, eating, basic functioning... has been impossible. But so much has been happening that I need to post! Good ole June....Tieler had a well child check up on the 8th. She dropped from the sixteenth percentile back down to the 11th, which I think is normal for were we are at considering the situation. Ok going off on a tangent here..... I absolutely LOVE My pediatrician. He in phenomenal. His name is Dr. Duffy he is at Riverton hospital. He totally puts up with me, and does such a wonderful job for all three of my kids, I can't say enough. BUT his nurses... (Which by the way I think is so so so huge) Are just as fabulous. I love them. I just had to say how great they are. I trust them so much to always lead me in the right direction... RETURN to Tielers well child check up... We also discussed were she was at were I wanted her to be, Tubes- when and why,and mostly about the appointment with the geneticist Dr. Longo, Who Dr. Duffy and Dr. Sukonju (Tielers Nuero) said was wonderful- We were being sent there because Tielers Carnitine was still deficient, and had slightly lowered. We are so confused by this and I was really hoping that this upcoming appointment with Dr. Longo on June 11th would really help to clarify what is going on with her and why it is low. NOW every single Doctor and specialist we see (A LOT) has told me that the body should be replenishing itself and was not associated with her diet since its not existent... Hence- getting sent to see a metabolosist in the first place. So I made Gary leave work and come to the appointment. It went terribly. First we saw this stupid Dr. Warnock..... UGH She sucks... worst doctor I have taken my kids too. She didn't answer my questions and basically told us it was her diet and that they would run a few tests but Tieler didn't seem sick enough to have some of the diseases associated with this condition... Pissed off is an understatement. I told her how all of my other doctors has said differently her answer to me was well I think they are wrong cause she seems ok? After talking to us for 5 whole minutes. I was more angry than anything that she wasn't answering my questions at all then she would say any more questions?? I wanted to say yea please answer all the questions I just asked.... GRRR She told me they were going to to a organic acid urine test and re test her canritine to see were it was at. and we left- whats most irritating- having such high expectations to get answers. I know quite a few children on strictly formula diets and few safe foods like Tie and the do not have a carnitine def. I don't do the band aid effect. I want to know why things happen and not just treat them. So we left within the next few days we went and dropped off the urine sample at the lab the tech said 7-10 days for results.... No call.....two weeks.... No Call..... three weeks..... no call so after 4 weeks I called and left a message.... no return 4 days more, no return... finally got a person on the phone and begged for them to have some one call with the results...2 more days later Stupid Dr. Warnock called and in her stupid voice says the Tieler had a high glycine level in her orgainc urine test... I said what is glycine? she said its an amino acid and sat there silently. I said soooo why do you thinks it is high what does that mean? She said well kids that have this problem are generally much sicker so I think she must of ate a bunch of something that caused it to be that elevated. I said well what causes it cause she only eats five foods? She said she wasn't sure but was going to wait six months and redo it. WHAT?????????? Why are we testing for things if were not going to learn from the results??? and I looked up foods that cause an elevated Glycine and it said cranberries, grapes, and parabens.... Overall I guess I am just frustrated that she is still sick, treatments aren't working that GREAT and now were on the verge of scoping again... Third times a charm right? We have been talking about sending her file out of state to the specialists at CHOP in Pennsylvania. Maybe seeing a dietician would help? I haven't met anyone who is going through the same stuff with this disease? Someone anywhere in the world has to be like her.... I need major answers and no one seems to know how or whats happening in her little body...

As for Jaxen Just after my last post Jaxen spent a few days in the Hospital at Primary Childrens. It was a scary few days of trying to figure out what was happening. He was complaining about severe knee pain for days that came in waves. he had had a mild bug before it started, like fevers and feeling unwell. We could not tell if it was growing pains or he had pulled something? The pain got worse and worse to the point were he was screaming his guts out in pain. after two days we decided it was too intolerable to watch we took Jaxen to the ER and he was immediately admitted into the hospital. They said Jaxen had elevated white blood cell count and a CRP of 8.1 ( very high) CRP is the level of inflammation detected in the blood they told us 2 was very high so 8.1 got him a room...They administered loads of pain medication to were he was comfortable and they could attempt to find the cause of the pain and inflamation. We were told that they had thought it was possibly cancer at one point which was the scariest thing EVER!!!!!! after three days of testing, Bone taps, MRI's Jaxens CRP began to lower slowly. at some many points did we think we were about to go into surgery, but we also luckily avoided that too. They dont know what it was but possibly Juvenile Idiopathic Arthritis? We wont know till over time. He has had a couple flares since then but nothing some Ib Profin didn't fix. The MRI showed fluid in both knees even the one not hurting... Weird they also said they thought it was this referred pain thing from an infected joint... We ended up getting to go home and Jaxens been doing much better. He is getting so excited for kindergarten, a year late lol. I feel like he is ready this time and his health care is in check more than it was last year. He was just too sick to start school. Were debating about whether he will need one of the "504" plans... He misses school regularly because of his condition. I refuse to get a note each time.. Silly... So most likely I guess. He starts feeding therapy next week which Gary and I can't wait for. Jaxen is eating ONLY pbh sandwiches and really nothing else. His case is sever... we are loosing our minds dealing with this I am hopeful they will teach us all!!
Bostons doing well, Diagnosed with Asthma, which we knew. An Egg allergy and of course DOG...they said Cat will pop positive in the future too. No big surprises. he will be getting his adnoids out in November..... and that's about it... Sorry these end up being so long... its like a fricken book....
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1 comment:

  1. sabuz606April 22, 2012 at 8:21 AM

    Eosinophilic Esophagitis Resource is a free online community where you can learn about eosinophilic disorders, ask questions, and share your experiences.

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