Sotos Syndrome???

Katherine - posted on 06/11/2009 ( 23 moms have responded )

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Are there any mothers out there who have a child with Sotos Syndrome? My daughter may have this condition, but it is very rare so I have not met any other children that are living with it. Stella is a wonderful child who, despite having some physical delays, is bright and happy. She is in physical therapy and is making great progress. If anyone out there has/knows a child with Sotos Syndrome I would love to share experiences with them.

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Dana Van - posted on 10/25/2012

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My daughter has Sotos, and so do I. We are both happy and healthy. I had other health issues, but my daughter had only Sotos, and she is beautiful and loving and has an incredible memory. She is 4 and a half. She has a lisp, and is very tall and strong. Born a month early. Solidly normal intelligence. I'm blessed.

Sotos is similar to Weavers, and is not a negative factor in our lives at all.

It's a bit tough when people don't realize she is only 4 and yet so tall, but that is their

ignorance, not our problem.

We are in California - Bay Area.

I don't drive, but would love to meet up with anyone close to us, or penpal.

Welcome aboard, Dana

Rhonda - posted on 03/29/2012

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Hi there....both of my boys have Sotos. When I first learned something was not quite right....I was devasted. It took forever to learn what it was. Know that we know....we do the best we can. Luv my babies. : )

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RACHEL - posted on 03/12/2014

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Hi I'm raychel my son is 3 he has mutation Soto syndrome. We've known 12 months now. He is beautiful I see a resemblance to all soto kids I'm here if u need me I've met Trevor cole the leading specialist

Steph - posted on 02/11/2014

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Hi my name is Stephnaie n u have a 6 and 1/2 ur old daughter who d docs say has a mild case of sotos - like everyone else we too hv not heard of such a syndrome - cerebral gigantism...... Whn she turning 5 mths d growth had stopped but stil a lil larger thn norm - we did n MRI to rule out d possibility of hydrocephalus thank god!!

She's potty trained and eats on her own but putting on shoes n certain clothes still is a challenge.

Academically shes knw to recite nbrs 1-100 can read a fews words but her writing stil nds improvement.

She attends special schl 3x a week n twice she joins isn d mainstream class just so she learns to interact with others.

She speaks a lot and her train of tot seem very fast - tends to jump frm one topic to another - it can be tough trying to teach her stuff

We did an assessment 3 yrs ago n she is delayed by a year - anther session is due in Mac and i pray to the report shows some kind of improvement

Debbie - posted on 02/08/2014

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Hi my name is Debbie. my son Nicholas is now 10yrs old. I am so glad to have someone to talk to who knows about Sotos. Nicholas is on melatonin to help him sleep I have had sleepless nights for the past ten years and most days we are exhausted. Niicholas is also very tall and has large hands and feet. He is amazing so intelligent and is sports crazy though he is scared to play. he is not very confident and people are ignorant and just label him as having global learning difficulties.
We live in auckland. New Zealand.

Gladys - posted on 01/27/2014

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My name is Gladys, my nearly 15 year old daughter has soto syndrome, it has been a long hard struggle with her limitations, but my faith in God has helped me coped better and I trust God will continue to give me grace to face any challenges I am faced with daily in caring for her, she is adorable and happy, myself and her big sister love her dearly.

Dana Van - posted on 09/28/2013

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Hi All,
Dana here. My daughter with Sotos is 5 and 1/2 now. Please let me know if any of you live in California. I would love for you to visit us, or we can drive. Katie likes trains, books, bike riding ( a sit down bike), blocks, tea parties, cars and trucks, movies, and talking...a lot...

You could also contact my sister on Facebook - Justine van Spyk, her Auntie.
Thanks!
-Dana

Mateja - posted on 07/26/2013

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Hi Katherine, I am not from UK but I have a son who is diagnosed with Soto’s Syndrome. He is 6 year old. If you would like to share experience I am here :)

Erica - posted on 05/27/2013

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Hi! My name is Erica and my stepson has Sotos he is six years old and I was wondering if you all could fill me in on somethings you have noticed in you children before they started to talk or communicate to you things they wanted. How did you teach your child to tell you what they wanted other than sign language.

Becky - posted on 05/01/2013

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Hi ladies!
I am SO EXCITED to have found you all! (I am almost in tears I am so happy!) My name is Becky, and my daughter Sydney has Soto's, she just turned 4, (April 7,). She was finally diagnosed in October 2.5 yrs. ago. It has been such a long, long road, made even longer because this is such a rare syndrome (1 out of 14,000 or something like that) so, it isn't well known, heck, it's NOT known at all! We have never met, don't know anyone with, don't even know anyone who KNOWS someone with Soto's.
It's so great to know there ARE others like our family out there. You "get it"....So, anyhoo, I just wanted to introduce, I can't wait to meet you all!
-Becky

Brenda - posted on 04/27/2013

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Hello , my name is Brenda and my son has soto's syndrome, he just turned 7 and he's a very loveable boy , I would really like to know from a mom with a teenage boy how has it been for her and how he was during his early years in school and how is he now . Please

Amanda - posted on 01/20/2013

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hello! i just stumbled upon this post trying to google help for my 5 year old daughter with soto's syndrome and potty training. it's kind of late for me on a work night and she has an upper respiratory infection (no need to explain as you all know!), so i can't write alot right now. but I'M SO EXCITED! any of you still out there to reply?????

Dana Van - posted on 10/25/2012

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Hi! tried to post but I don't see it here. I am a Mom with Sotos, and I have a daughter age 4 and 1/2 who also has Sotos Syndrome. She is happy and healthy and has a great memory. Talks a lot (with a lisp still), and is almost done potty training. She is a total joy. She loves puzzle, going to the park, dancing, tea parties, play-doh play, bike riding (recumbent bike), and having books read.

I don't drive, but have transportation available. We are in the Bay Area -Northern California, and would like more playdates. Feel free to contact me - thanks!! -Dana

Jodie - posted on 09/26/2012

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Hello Katherine. My name is Jodie and my daughter was born with Sotos Syndrome. She is now 5 and started kindergarden this year. When we found out I was devastated but my doughter is healthy and happy. She was put into a special school 2 years ago and it has really helped her in wanting to talk. We are still have ing problems potty training her but in time she will do it. It's hard to talk to other parents that don't have a child with this symdrome. I would love to hear from you and see how your daughter is doing.

Jamie - posted on 09/21/2010

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My son has alot of the same symptoms, we is very large for his age, he grew 3 in in 3 months, has a big head, hands and feet, is double jointed in almost every joint and is delayed in gross motor, cognitive and speech, he is almost 17 months and still does not walk. He is in physical therapy and has come along way. I was wondering if either of you got answers and if it was sotos syndrome what were some of symptoms that you noticed first?

Katherine - posted on 07/30/2009

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Glad to here it's not Sotos Syndrome, but I hope that the tumor is treatable. Thanks for the well wishes! Good luck to your family too!

Angela - posted on 07/30/2009

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Hi Katherine. I wanted to let you know that the Genetic Dr did not think that my son has Soto Syndrome. He believes it's the brain tumor causing his abnormal growth. I wanted to wish you luck with your daughter and I hope you find the answers you are looking for. Being a parent is not easy, especially with a special needs child. Your daughter is very lucky to have such a caring mother. Take care.

Angela - posted on 07/14/2009

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My son has not had to have physical therapy. It has just taken him a little longer to get it down. He has the large head and is big for his age. Does your daughter have an abnormal bone age? The latest research I've done is another cause of all of this is Precocious Puberty. This can be caused with problems with the Hypothalamus in the brain. We just found out my son has a Hamartoma ( benign brain turmor) which could be causing all of his symptoms. Good luck with your next appt. I know it can be so frustrating, but you're being a great mom by taking the time to investigate.

Katherine - posted on 07/13/2009

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I'm ready for answers too. We have another appointment with genetics in Chapel Hill, NC coming up. The last test was inconclusive. The genetic malformation they usually look for did not show up but it only shows in 80-90% of cases so there's still that 20/10% that it could still be sotos syndrome. My daughter looks so much like the sotos babies I've seen in photos. She has a relatively large head compared to the size of her body, but she's always been large for her age too. She also has a significantly raised palate. Did your son have any similar physical traits when he was younger. The doctor's tell me that they usually grow out of that part. Also, has he had physical therapy?

Angela - posted on 07/12/2009

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Hi Katherine. My 8 year old son is being tested for Sotos syndrome. He had an x-ray that showed an abnormal bone age. He has always been very physically delayed and very uncoordinated. We have an appt with a Genetic Specialist on July 29th. He is also being tested for Asperger's Syndrome. We have 3 Dr's appt this month and I'm ready for answers. If you need someone to talk to you can contact me.

Jamie - posted on 09/21/2010

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My son has alot of the same symptoms, we is very large for his age, he grew 3 in in 3 months, has a big head, hands and feet, is double jointed in almost every joint and is delayed in gross motor, cognitive and speech, he is almost 17 months and still does not walk. He is in physical therapy and has come along way. I was wondering if either of you got answers and if it was sotos syndrome what were some of symptoms that you noticed first?

Katherine - posted on 07/30/2009

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Glad to here it's not Sotos Syndrome, but I hope that the tumor is treatable. Thanks for the well wishes! Good luck to your family too!

Katherine - posted on 07/13/2009

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I'm ready for answers too. We have another appointment with genetics in Chapel Hill, NC coming up. The last test was inconclusive. The genetic malformation they usually look for did not show up but it only shows in 80-90% of cases so there's still that 20/10% that it could still be sotos syndrome. My daughter looks so much like the sotos babies I've seen in photos. She has a relatively large head compared to the size of her body, but she's always been large for her age too. She also has a significantly raised palate. Did your son have any similar physical traits when he was younger. The doctor's tell me that they usually grow out of that part. Also, has he had physical therapy?

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