Wow. I wish I'd known about these. We asked around here (Canada) and no one could help us. Ashbea's (10 yrs - Sotos) bike with regular training wheels was...
I am sure you will find us in the past articals. My x is 36 was diagnosed when his child was diagnosed. His first child (Sotos) is now 10 (high functioning)...
I can't even begin to imagine a day that Megan will ride sitting straight up and watching where she is going! :) She has no fear and there is usually nothing...
The two our mine and his. The other his new wife and his. ... you dont mind me asking, what area are you in? ... when ... but ... been ... late, ... amonia, ...
I will be shocked as heck if that kid of mine ever gets out of training wheels. Jenny On Sun, 1 Jul 2007 18:40:04 -0500, Monica Boers wrote ... -- WOW!...
I know the feeling! I was so surprised that the bike actually holds his weight. The regular training wheels that comes with bikes bent in a mater of minutes....
We initially took the old, original training wheels. We worked for two summers ti get him to ride his new bike. My parents had him for a week and tried again...
Kim, Only about 10% of sotos kids have seizure disorder as well. Like anything, you should know what possible symptoms come with sotos, and be on the look out...
Hi Toni, I understand the friendship thing. It was easy when Lydia was a toddler, because their communication skills are not so integril to "playtime". They...
Justin, 24 has a slightly enlarged heart and has never been on any regular meds. The Dr. thinks Justin's is enlarged due to his body size, and wasn't too ...
Never say never!! I always said my daughter wouldn't, and now she rides without them and just as good as all the neighborhood kids. Tallie is 10 yrs old. ......
Dear All My husband Alex is 32 and is Sotos, along with our daughter Evie, 3. Every day is a worry about them both but we march on. I would still love to hear...
Thanks Zoe for your message. I hope you carry on well, as Sotos Syndrome is so diverse, I suppose your husband has done great until now. My daughter who is...
Carla, Thanks for the advise to other people. Meds might have secondary effects, but they are unpredictable as to who and which consequences they can...
Toni, How long did it take for Tallie to learn without training wheels? Lydia has done so well and is a strong rider, we were thinking of trying without in a...
Hi April, I am 32 and was diagnosed with Sotos by way of NSD1 testing at the same time as my daughter. I have been married 14yrs, and have two kids ages...
Tara- Hi my name is Kim mother of Faith(sotos 15 months.) I am wondering if you could share your life experiences living with sotos. And do you have any...
Marlie, I can't remember exactly how long, but it did take quite a while due to she would try like crazy for a day (2 to 3 hrs at a time) and them lose...
Marlie, I forgot to tell you Tallie was in 2nd grade when she mastered it! Toni ... From: marlie gernhardt To: Sotosyndrome@yahoogroups.com Sent: Monday, July...
My son, who turned 5 in April, has mastered riding without training wheels. We are so amazed at how fast he learned we basically took off the training wheels ,...
Tara, Nice to meet you! I too tend to ramble, so I dont mind. My son (5yrs) has weaver syndrome, close to Soto's. Did you have any clue that you had a syndrome...
I wasn't saying that an enlarged heart is always caused by meds. I was just cautioning that a lot of doctors prescribe ADD meds and never do yearly exams to...
That is true. That's why I believe there should be stronger guidelines for doctors prescribing these meds to do thorough check-ups on the kids taking them....
That's a great idea. Sophie has a heart murmur, but so far nothing about an enlarged heart. She is 5, so time will tell. We haven't had to give her any...
I didn't mean to scare you. It's none of my business, but out of curiosity, did your doctor ever recommend any periodic tests to make sure everything was...
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