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just a shot in the dark... 8 years 3 months ago #42998

  • shannon79
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ok guys, this is probably going to be long, and I'm sorry. but I'm lost and scared and this is something I'm throwing out there. my daughter is 5 years old, and had a bout of itp back in December. it wasn't precipitated by anything we know of, no sickness etc. she bounced back quickly--her numbers climbed to norMal range within 4 weeks. but she still isn't right. to give some hisgory--she is our 4th of 5 children, normal birth weight and all that jazz. but she's been a slow grower from the time she was a baby. she's different than her siblings--my only baby to have baby acne, eczema AND cradle cap at all, and all on her FACE all at the same time (seriously, it was terrible to look at). she had Constipation issues as an exclusively breastfed infant. you should have seen me trying to get the docs to believe that...not until she actually gave herself a "skin tag" from straining so hard did they finally believe me. terrible eater, slow to gain weight... basically the kind of kid that always worried me...I always felt like we were waiting for the other shoe to drop, you know? so when the itp came along, in some ways it was almost a relief--like here it is, an actual Thing with a name--not just mommy's spidey senses setting off alarms-- and now she'll be treated and be ok. except she's not. in the past year she has grown about 3 inches, but gained and lost and gained and right now she's up about 1 pound from a year ago. she gets flare ups of petechiae, but her numbers have been fine when tested. the hemotologist recommended letting her go through the summer, maybe her body needed time and sunshine to recover fully from the itp. so that's what we did--encouraging good food, green smoothies, physical play. now she's pale, with dark purple circles ALWAYS under her eyes, skinny as all get out, and she's begun losing her hair. I asked for a thyroid test, it just came back completely normal. I'm totally lost here...my gut is telling me SOME THING IS WRONG, but my brain is second guessing saying maybe I'm just paranoid or overly cautious. I'm waiting to talk to her pediatrician on monday, and see if she wants to see her again or just give us a referral to a rheumatologist. (she felt followup with either gastro or rheum was warranted back in March, but said to get the hemotologist's opinion, which was rheum, but first to give it time as I mentioned above)
I know you guys aren't doctors, but i know how knowledgeable a parent can be in these situations. so I'm asking if anyone has any ideas? am I crazy? haha ;) my gut tells me there's definitely something autoimmune going on...
p.s. sorry for any typos, I'm doing this on my.phone.

thanks for listening,
shannon

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just a shot in the dark... 8 years 3 months ago #43014

  • Rob16
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Shannon, my granddaughter is five, so I can really relate.

There's nothing crazy about worrying when something is not right with your child! And when she is the 4th of 5 children, you know when something is not right. Trust your gut.

Have you considered the possibility of cœliac disease? It can be associated with thrombocytopenia. It causes lots of often vague symptoms, including failure to gain weight and general malnutrition. It can cause hair loss. It can even present with no clear symptoms, until showing up on tests.

Here in Georgia, the kids are back in school, so from where I stand, I'd say summer is over and now it is time to make an appointment with the rheumatologist.

By the way, was her slow growth from birth, or only after weaning? That could be a clue.

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