Dear Susan, Boy, does that sound familiar about Shannon not behaving as if she is ill even with a high temp. Aaron did not slow down at all when he was younger...
Would all of the new members please take a moment to introduce yourselves? If you are uncomfortable going into details yet, you can just say hello for now....
Hi, I don't think I've actually introduced myself, mainly because we're just investigating over-growth syndromes. My 5 year old son was diagnosed with high...
hi all I am jan mother to jeremy. jer is 3 1/2 and has abdominal situs inversus(everything below his heart is reversed), when he was 1 he was dx with soto but...
Hi Michelle, My daughter Ireland has Sotos. I always knew something was wrong, but the docs didn't listen until she had a grand mal seizure. That was there...
Hi Michelle I would say that 129cm is pretty tall for 5 1/4 My son is 5 1/4 and is veyr tall but is still only 121cm-98th on the Uk charts and probably...
... UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Sarah_Mom_of_Ireland_ ... Hello, my daughter has learning difficulties. She had heart surgery at 18 months...
Hi V Welcome to the group. We are in the UK too. I am sorry but cannot help on the eeg as it is the one test that my son has not had. I just wanted to say I...
Hi Michelle My daughter Shannon is 6 3/4 and has "an overgrowth syndrome not yet recognised". She has had obsessions, rituals and phobias since she was about...
Hi Vx I'm sorry I don't have answers to any of your questions, but I just wanted to say hello because we too are in the UK and I don't think there are many of...
Hi Susan, I am in Stockport, Cheshire. Thanks for introducing yourself. My daughter is called Anna and she is a fantastic little girl, I have a feeling the...
Hi Miranda, our daughter is 8, she has been tested in the past for Williams syndrome and de George syndrome, we are waiting for the results of Gorlin although...
Dear Sarah, Thank you for writing, I'm finding it interesting that several children with overgrowth syndrome that I've heard about also have seizures. I'm...
Miranda, Hi, thanks for the welcome to the group! As I was just writing to Sarah, I've looked into Sotos, but think Ben might not fit the symptoms because his...
... Hi V, I'm new here too, but thought I'd answer...Yes, my 5 year old sons eeg showed multifocal epilepsy and he's also been dx's with autism. We went in for...
Hi Susan, (((BIG HUG))) to you, its frustrating trying to figure these things out. It took us til Ben was almost 5 to get his diagnosis, fact is the first doc...
To v and anyone interested Underneath this paragraph I have posted the sort of history of Finn. It explains why he need the MRI at such a young age and may...
Hi Michelle Thank you for the info on autism. Shannon's sensory organs go into overdrive as well and according to the Ed Psych it is because one side of the...
Hi Vicky Shannon is basically quite healthy, but has global developmental delay, causing mild learning difficulties, autistic tendencies, delays with fine and...
I am here because I am really concerned about my nephew. I just think there is something wrong - pretty sure it's Soto's. He was a big baby 9-5, 22 in long,...
Hi Susan, Ben's seizures were diagnosed this last December, just before Christmas, about 3 months after we got the HFA dx. It was sort of a miracle that we...
Hi Michelle sorry to butt in here, but thought I would let you know that apparently the two docs specialists involved in Sotos have established that there are...
Hi Susan thanks for remembering:). It was a horribly emotional day really but we did get results. WE employed a lawyer three weeks before the tribunal in the...
Hi Tam Welcome to the group. Hope you find some answers here. I have been following your posts on the Sotos site and think you are such a great aunt for your...
Hey Miranda, I am here in overgrowth syndromes because my SIL may end up at the SOto's site and I don't want her to know I was there. Crazy I know. I...
Anyone's kids have cysts? My nephew has had 2 cysts so far - one vallecular cyst - in his throat, removed at 3 months. Also a choroid plexus (brain) cyst found...
Ooooooh I don't envy you. I know what you mean about not buying that old chestnut of ' oh it's just because he's been ill', because believe me, we as parents...
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