Hi Lulu I replied earlier to you but my email replies aren't always getting through. Just wanted to say how sorry I am to hear about Kierra's health problems....
Hi Jodie I just want to say welcome from England. You will find this site so helpful and supportive with the various issues you will be coming up against. I...
... helpful and supportive with the various issues you will be coming up against. I guess the doctors in Tasmania will be less informed about Sotos than...
Hi Jodie and Demi Welcome to the group. My name is Linda and my 6 year old son Cameron has sotos. He was diagnosed when he was 3. We stay in Scotland (UK)....
Hi Tamica, It's Katie from Morrisville, Vermont. My family and I are planning on going to the Omaha conference this year. I have been looking into airfare...
Hi Tammy, Lydia started out with 18mg at about 45lbs. We bumped up to 27mg at about 52lbs. It is wearing off in the afternoons and instead of bumping up again,...
Hi Jodi, Welcome to the site. My son Jesse just turned 6 and was diagnosed last September. We are in Canada. You will find a ton of information here. The...
We had an eligibility meeting today to see if Brayden qualified for preschool. He is eligible for service and we have an IEP meeting next Friday. I was...
Hi becki... Jacob has had an iep for the last 8yrs (dang,its been that long?!) I think the quality of your iep depends on your relationship with the...
Donna, My Zach was on Lamictal for a while, it is a very good seizure drug. He started having seizures on it after about a year or so. His Neurologist kept...
Thanks Jenny, I will make sure to read all the information they have given me front to back. I will also make sure that what I feel is important for my son to...
Excellent..you know what he needs; you know him best. Also, if there is something that doesn't exactly fit his classification.. Have them write the need in....
Hi Katie! We are in the middle of selling our house so our records are all boxed up. I will give you the info that I can remember but unfortunately dont have...
Hello Jodie, I am Brenda, and I have a son, Scott, with Sotos. He just turned 5; he was diagnosed at 10 mos. Just wanted to comment on the tantrums; we had a...
thanks so much for the info. I am sorry to have bothered you....i was not aware you are in the midst of moving. Good luck with the move. It's not an easy...
Hi Heidi. No problem, I too only check this message board once every week or so. I remember being in your shoes with many of the same questions - especially...
Jodie i normally end up in tears myself It's hard to watch them struggle. You've come to a good place though. Most people here have btdt. You will find a...
Mireille - Thank you so very much for sharing your son's story - it is such a help to get an idea of what to expect, even though all kids are unique. I had to...
... moment to her what other peoples children are up to how hard was it to get scott out of nappies im finding it hard with demi demi is also getting ready to...
hi can anybody tell me if there are any books on sotos syndrome or any information in paper work as i live in tasmania and theres nothing down here i would...
Hi Yvette, thanks for getting back to me. I've learned that pseudotumor cerebri is more of an adult disorder than childhood, but any pressure in the brain I...
Thanks Susan, We're holding up fairly gracefully here. Kierra sees the neurosurgeon tomorrow about getting a shunt installed. My husband is flying home on...
Jodie, I honestly thought we'd never get out of diapers before Kindergarten. But slowly, he got the hang of it. Scott also struggles with chronic constipation,...
no problem! Hope it works for you! We are in the final renovation stages before listing....hopefully within 2 weeks time....wish us luck! ~best tamica...
... hasnt started ot yet but i think i will start that soon as it sounds like it helps yes we can only take it one day at a time and for sure everyday is...
Hi Jodie.I have 2 books on Soto Syndrome. One is The Official Parents Sourcebook on Soto Syndrome which is basically an Internet directory ISBN 0-497-11059-8...
Hi every one, It has been a long time since i have posted a message on this site but feel i could do with a little help at the moment as i am haveing trouble...
I just wanted to tell you to stick in there. I know how tough it can be. Especially the toileting issues. I have woke up on various occasions to poo smeared...
Yup... The adoption is official as of last night. I'd like to introduce paige! She is a beautiful, dark brindle with a sweet white face. Paige will be 8 in...
Jenny, Great name! ;) Take care, Paige ... From: jaheater3@... To: sotosyndrome@yahoogroups.com Sent: Thu, 3 May 2007 10:11 AM Subject: [Sotosyndrome]...
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