ZWVMom
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I may not be perfect but I'm always ME.
Posts: 14
Carthage, Texas
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Well... all of this is a really long story.. My daugther has had GI problems off and on since birth. At 5 months old she was dx with Eosinophilic Gastroenteritis, although her doctor now believes she didn't actually have that, since her count was less than 20. She was dx with Failure to Thrive, and, with avoiding Milk and Soy, she was a healthy toddler. At age 2 we had her allergy tested, and she was positive to ALOT of evironmentals, grasses, mold, mildew, trees, weeds, etc. Her doctor put her on Zyrtec, Singular, Nasonex, Flovent and Breathing Treatments as needed, and it cleared up just about all of her symptoms! In November of 2010, she began having abdominal pains, and I suspected that her EG was acting up, so we made an appt, and her doc Scoped her, and it was clear, we trialed milk and soy, and again it was clear. So, we made an appt with our Allergist, per our GI's suggestion, and, during our blood test with him, she had a positive reaction to Latex in the tech's latex glove that she used during the blooddraw. Her blood tests came back perfectly normal, that after that, that allergist said he could no longer help us, and referred us to another allergist. This allergist researched a little bit, and found that some foods were cross reactive with Latex, and told us to avoid those foods, we did, and Zoe's syptoms seemed to improve. It wasn't until she started school in August that she really began having some major problems. It started out with just flushing, then she would be red all over, then the bumps that weren't that noticable when she was younger, were very apparent and turned red and seemed to spread to her thighs and her cheeks. (another doctor has dx these as karatosis piloris by pictures). Then she started coming home just completely fatigued, and her teacher would say that by the end of the day, even after a nap, Zoe wouldn't want to play, she would just sit next to her and kinda space out. Then the nausea and abdominal pain started, and it began to happen more and more frequently. I then made a second appt with her doctor that we saw earlier that year. He said that he wasn't sure what was going on, but that it was something that was more than just a Latex Allergy. He said we should pull her out of school, that her sensitivity level was just increasing, and he put her on Atarax in addition to her other medications, and prescribed an EpiPen. In October, Zoe had her first Anaphylaxis reaction to Pumpkins/pumpkin seeds, although at that time, I didn't realize it was anaphylaxis. The nurse had told me that you can have an "internal rash" with latex cross reactive foods, that I needed to bring her to the ER, so I did. By the time we arrived, Zoe had passed out completely in the backseat. A nurse in the waiting room helped me wake her up, and the nurse back in the ER didn't recognize it as Anaphylaxis at all, since she wasn't having any problems breathing. She was however having abdominal pains, nausea, flushing, extreme puffyness, purple under her eyes, and extreme fatigue. Now I know that this is how her Anaphylaxis presents itself. Since then, she has had 4 episodes of Anaphylaxis, (2 of which included problems breathing) and we have been to our 5th allergist, who, after I requested it, tested her Tryptase level, (it was undetectable) and her 24 urine, which was normal, (but she didn't have any symptoms at all during that 24 hours). Even though she has all of these symptoms from Dr. Atkins published article on MCAS, her doctor would not pursue or refer us to anyone else. He dx her with chronic abdominal pain, and said she was a stressed out child, and needed to see a therapist to learn how to deal with her stress. When I told our family and close friends this dx they all laughed. My daughter is one of the most chilled out kids you will ever meet, and our lifestyle is extremely laid back. I can't think for even a moment of anything that my kid has to be stressed out about other than her 3 yr old sister jacking her clothes or shoes! *lol* I completely believe that my daughter has had this disorder/disease/syndrome for quite a while now. There was just something at her school that sent it into overdrive! We thought that we knew what her triggers were, lots of foods, latex, stress, (from pain ex: tripping and hurting herself), hot, cold. When the last doctor admitted us, and did food challenges, to see if we had an actual food allergy, (he was a food allergist), we trialed latex on day 1, with no reaction, (we were completely shocked!) and wheat on day 2, with again, no reaction! The only thing we can think is that it's evironmental, or a preservative, something that is the difference! He didn't trial anything else. Our doc had a psychiatrist come and see Zoe, and it was her that led him to the dx of chronic abdominal pain.
We need help! I know that this is long, and that she has had a few dx, but none of them fit! None of her docs would even consider trying any of the meds on her to see if they would improve her symptoms. We can't find anyone to order any tests, and we are completely at a loss of what to do. Right now my child's life isn't what I want for her at all. She's home bound, (something outside is causing her to react), and she attends school via Skype. I want my child to be able to go to a birthday party, be in dance, have a normal life without me having to use an EpiPen on her to stop her reactions! Can you make any recommendations, help me figure out how to get Dr. Castells to reply to an email, do anythign for us? Does she sound like MCAS to you? I have always put my family first, so rearranging our lives for her best interest wasn't even a question, we just rolled with it, but I don't want it to be her reality any longer than it has to be. Thank you for your time again!! Chrissy Ward, mother to Zoe Ward, age 5
Symptoms: Abdominal abdominal pain, intestinal cramping and bloating,diarrhea and/or obstipation, nausea,
Oropharyngeal aphthae Respiratory cough, asthma-like symptoms, rhinitis, sinusitis Ophthalmologic difficulty in focusing Cardiovascular tachycardia?(never tested for it), blood pressure irregularit (hypotension and/or hypertension), syncope, hot, flush (she also sweats ALOT!)
Neuropsychiatric decreased attention span, difficulty in concentration, forgetfulness, anxiety, sleeplessness, lightheadedness, Cutaneous efflorescences with/without pruritus, telangiectasia, flushing, angioedema, Keratosis piloris
Musculoskeletal osteoporosis/osteopenia?, (she's broken the top of her foot twice before the age of 3) Constitutional fatigue, environmental sensitivities
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