Some of you finding this group may know me from the Sotosyndrome group. My daughter has classic Sotos, but there are a lot of people on that site who aren't...
Don't forget to post photos in the photo section. I have started several different folders for different syndromes. If yours isn't there, you may start a new...
This does sound a lot like CANDRA and has actually been diagnosed with this from the age of 5 until 9 who knows after Christmas will start again. Patricia ......
Hello Sarah, My screen name is 'Alpha' and I generally keep a low-profile in e-groups (I belong to a few overgrowth groups), but since this is a small group I...
Hi Alpha this is Patricia not Sarah. No you are not the one but either way glad to have you. I personally had checked the member listing and say the...
Sarah the reason I had asked for birthdates and questioned you about 19th month was so I could surprise you by adding the girls to the calander. Sneak you...
Hi, Alpha, Nice to hear from you! My daughter, age 14 months, has been very sick most of her life. We didn't put too much thought into her large size at...
Patricia that is so funny! When I saw Candra's birthday I thought I would surprise you so when her birthday comes the site will get a reminder! Ireland...
Hi there....it is Pam from the Sotos group! :) Nice site! I was shocked to see there is another name for Sotos Syndrome other than "Cerebral Gigantism". I...
... Thanks! He is sweet especially when he is sleeping! LOL! If seeing a pic of him can help someone then I don't mind posting them. Actually, one of the...
Hey Pam! I too was shocked to read that it was well-known among pediatricians. Mine had heard of it, once we got a diagnosis elsewhere, but he had never...
Thanks for the welcome! I have been on the Sotos site for a couple of years and gained TONS of helpful info. As we were 'undiagnosed' for seven years, the...
Thank you so much for creating this user group and for inviting me to join! I will post tomorrow about my son who has an undiagnosed/un- named overgrowth...
Hi everyone and thanks for starting this site. Strangely, I have been thinking that I would really like to see a group of sotos-like children and undiagnosed...
Pete hi I have a little boy who is now 5. He has just got the same dx as James from Dr Cole. Is there any chance of you posting a pic on the site or emailing...
Just wanted to let all of the new members know there is a file in the Database section called Karyotype. If you know your child's chromosome Karyotype, and...
Miranda, Sure! If we can help anyone else, we surely want to. I just have to figure out how to do it; I might have to get my daughter (19y, next month) over...
thank you Pete - I think so MOST of the time,but sometimes......:)) hmmm. No really, he is very sweet, but has his moments(on a regular basis:( ) I am...
Hi again I have just noticed on the symptom list that you had these issues with James. Finn had this for the first year of his life and was severely...
Does anyone know anything about glands, especially in the neck, that stay swollen for a long time? Ireland was sick about a week ago, and she is feeling much...
Hi everyone, Just wanted to let ya'll know I just posted a new pic of Ireland, the first one taken right after she was born. It's a beauty, I hope ya'll will...
Sarah Hi I don't know ABOUT glands per se, except to say that this used to happen to Finn all the time and still does but more infrequently now. He too was...
Alright, Ireland finished her second course of antibiotics, and her glands are still swollen. Now she isn't on any antibiotics, but she obviously still has...
Just wanted to let everyone know that if anyone else has a certain time of day, like in the mornings, and a different day of the week, that would be better for...
Hi Everyone I've just joined your Group. I was so relieved to hear that there is a group for undiagnosed overgrowth, as I find the not knowing bit harder to...
Susan, We are so glad to have you here. If you need any info, just ask, and maybe one of us will know. If we don't know, we will still listen if you just...
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