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Starting to freak out a little 9 years 7 months ago #31999

  • Matixsmom
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So over the past 4 months things have changed drastically in our life with the diagnosis of ITP. I have taken him to get a second opinion right after diagnosis because he is considered "not a typical case". Well, slowly things keep changing and all these new symptoms keep coming up. I feel like I am losing my mind! Lately, I can't even pin point exactly when it started, Matix will not eat well at all. He has always been a picky eater, but now, he will skip breakfast, eat a few bites of something for lunch and skip dinner. My heart breaks. I beg him to eat. He just tells me he is not hungry. He says his stomach is not hurting. My doctor wants to check for H Pylori, and I will do that, but I don't think that is what is going on. Sometimes he will act so hungry and then take a few bites and say, I am full now. For the past week, his gums have been bleeding every time he brushes his teeth and his platelets are not that low. His skin is itchy and he was really pale this morning. Any suggestions? I just have this gut feeling something is not right :dry:

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Starting to freak out a little 9 years 7 months ago #32000

  • alisonp
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I do think that mums have a second instinct when it comes to their kids that doctors would benefit from listening to. About a year ago, I nearly had a shouting match with our GP who insisted that my son's massively swollen leg and increasing pain weren't anything to worry about - eventually she agreed to send him to the hospital where he stayed for the next 4 days on IV antibiotics! I don't know how long ago you had the second opinion though or what tests they have done. If you are still worried however, go back and explain all of it to the doctor including the newer symptoms and see what they say. I think I would be worried if that was my kid because some of those symptoms don't sound like ITP. The H-pylori idea sounds like a possibility

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Starting to freak out a little 9 years 6 months ago #32898

  • firkins
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Hi -- I'm really late to this thread and I hope your son is doing better now. But I had a gut response reading your post - something to think about..... Perhaps his not eating is not at all connected to the ITP, at least not directly. You don't say how old your son is, but I am wondering if not eating is a way for him, consciously or not, to feel in control of something when ITP makes so much in his life feel out of control. It's an adaptive, if not healthy response. I mention this because one of my daughters (not the one with ITP) had an eating disorder -- restrictive eating, though not classic anorexia -- that came at a time when there was tumult in her life she couldn't control (my mom had alzheimers, my dad died, her best friend moved away, other things). She was 12 at the time, and I also had an eating disorder at the same age. I remember very clearly thinking, "Wow, my life is crazy and out of control, but I can do this one thing. I can be in charge of this." My daughter was not so conscious of her motivation but has worked through that hard time and come to see it was similar motivation.

Just a thought. I hope this is totally off base and he is absolutely fine and back to his usual eating!
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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Starting to freak out a little 9 years 6 months ago #32974

  • Matixsmom
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Thanks for the reply. My son is 8. He wants to eat, and tries to, but seems to get full after only eating a few bites of something. He seems to have other issues going on and we are going to see Immunology next month. Praying for answers soon!

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