Hi Everyone!!!!
Melody
my daughter Naja was born 5/2006. She spent 6 to 8 weeks in the NICU
and was released without a diagnosis. After many appointments with
different specialist and many tests we have finally arrived and it was
confirmed that Naja has Sotos Syndrome. All that she has gone through
makes so much sense now. The funny thing about all of this is that my
husband and I would always say...who does she look like? Well, after
seeing other kids with Sotos, I said...OMG, here are her sisters and
brothers..lol. They all look alike!! We are located in South Florida.
Naja is the last of 5 kids. She's about 43 inches tall. She was 10 lbs
7 oz at 36 weeks gestation. I begged the doctors to take her because I
was able to breathe!!! When she was born, she had myoclonic jerks. She
appeared to have seizures. She was in a comatose state for weeks. She
started receiving therapies while in the hospital. She went home on a
g-tube which was later removed at 18 months. She started walking at 22
months, potty trained at 3 years 4 months and began school at 3 years
5 months. She currently attends st, pt and ot. She will soon be
released b/c she has closed the gap. Although on paper they say she
has closed the gap, I can still see weaknesses in all areas. She
recently received a heart cath and we are constantly at the doctors
office about one thing or another, mostly fevers and infections.
Lately the infections haven't been an issue since we had tubes placed
in her ears. There is so much to post. I am open for any questions or
comments.
HikingStick
in Minnesota to connect, you're welcome to be part of the community.
If you've not already done so, you may wish to check out the Sotos
Syndrome Support Association (http://www.sotossyndrome.org/), a
national organization. They might be able to help you connect with
other Sotos families in your area, too.
Wow! You sure went through a lot with Naja. Our little one, Gideon,
had a rough first year. Though it's not been easy since, he's not had
as many serious problems as those you've described. He did go through
a period where he got sick easily and frequently--he had pneumonia
numerous times in his first year! I see you also posted seperately
about Naja's fevers, so I'l post a little more there.
Again, welcome.
Jenny Moretter
I too can relate in regards to the schooling, my daughter Mackenzie will be turning 5 in April and she has been in pre-school for the last year. She has sp, pt, ot, etc. They are having her start kindergarten in the fall which makes me extremely apprehensive being I think she is still not ready. She can barely identify letters or numbers let alone read, etc. She is making progress and loves going to school but I think she still needs more one -on-one attention.
We are actually bringing her to see a Neurologist and a Gastronologist to check her stomach for blockage and seizures. She has always had a really hard time with going #2 and we weekly have to give her emimas which can make her so incredibly sick that she vomits. We have tried changing her diet, benefiber and miralax and nothing works. I think there is another problem that is being over looked by her doctor's. Her urine always has a real strong odor which is strange being she drinks so much water. She is prone to bladder infections and still has a little trouble with potty training. Does anyone have any of these problems?
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HikingStick
Miralax does help keep things moving. We've been told that it has
much to due with the low muscle tone issues associated with Sotos
(since muscle fibers in the abdomen get things moving), but it is a
good idea to get things checked out, as there can always be other
issues at play.
We still have therapies scheduled, but they wanted to move our boy
(almost 3) to pre-school next year. It would have required a 30+
minute van ride. While not opposed to all pre-school, we felt it
would not be a good idea to send off a boy who has problems with
expressive communication. If something were to go wrong, or if he
just was overwhelmed or had a bad experience, he would not be able to
tell us what happened. We'll reconsider as he continues to develop,
but will most likely keep him home until either his regular
Kindergarten start age, or the compulsory education age in Minnesota
(age 7, I believe).
> For more options, visit this group athttp://groups.google.com/group/sotos-syndrome-families-mn?hl=en.- Hide quoted text -
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Melody
for kids with developmental delays. We had to go through a process in
order to get her in. It's funded by the county. Once she meets all
criteria for preschool, she will move on but with kids like herself.
The goal is to get her prepared for class with typical kindergarten
kids. Naja hasn't experienced any bowel troubles or uti's. I have
found through research that Sotos kids are prone to UTI's and bowel
issues. My husband and I don't eat meat and the kids don't eat any red
meat and rarely eat any chicken. Pork is totally absent from their
diet. We eat a lot of beans and green leafy veggies. Not sure if this
is the reason why we haven't had any issues but thought it was good
info to share.
Melody
my daughter started forming words not long after I introduced her to
Einsteins language cards. They are awesome. Of course in conjunction
with speech therapy. She would walk around with the cards in her hand
and study the pics. I would tell her what the pic was and she would
try and repeat it. The cards are well made and brightly colored. I am
always buying some sort of leaning or development activity. I posted a
pic of Naja too.
> > For more options, visit this group athttp://groups.google.com/group/sotos-syndrome-families-mn?hl=en.-Hide quoted text -
HikingStick
come along at his own pace. He has a collection of words, and only
recently (in the past few weeks) started putting them together in
groups of two (e.g., "go play"). With so many brothers and sisters
trying to help him, he is picking up more words--some less useful than
others (like "zombie"). My wife noticed he'll use the same sounds for
multiple things. "Nay" when playing with a little animal means
"horse", and "Nay" while near the pantry door means "I want an animal
cookie". It's certainly and adventure.
> > > For more options, visit this group athttp://groups.google.com/group/sotos-syndrome-families-mn?hl=en.-Hidequoted text -
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melody richards
HikingStick
I'm not sure that we'll be able to go to the conference, either. We
might apply for financial assistance (they have some available,
especially for first time attendees). If we do go, we'll drive.
Lisa
Hello and welcome. My daughter is 2-1/2 and is at 18 month old level
for comprehensive language skills and a 22 month old level for
expressive language skills. She currently receives early intervention
through the Birth-to-Three program through the school system. She
receives PT and OT through the school systems and we also get PT and
OT at Mayo Clinic. We have her assessed frequently both at Mayo and
through the school system for speech therapy, but is not receiving
those services, although we continually work on that with her.
Our little one has epilepsy, and also had an intractable seizure
disorder called infantile spasms (a very benign sounding name for a
very aggressive seizure disorder) from 15 months to 17 months old. We
were one of the lucky ones that were able to beat that. Grace is on
seizure meds and we see big cognitive bursts every time we increase
meds. Grace also had ear tubes placed at 14 months of age, as she had
14 ear infections in the first year of life. Since the tubes were
placed we haven't had any problems.
Grace will be going to preschool (after she turns three) in the fall
through the school system. Functionally Gracie is doing really well,
when it comes to standardized testing of skills, not so much. She
also loves electronics and computers. Her favorite shows...Playhouse
Disney and Sesame Street! We also use the Baby Signing Times DVD's
with her, so she does alot of sign language to communicate as well as
her progressive verbal skills.
Gracie does have some minor heart valve issues, but we keep a yearly
eye on those and so far so good. She also has sensory integration
issues, but we've been working alot on those and have seen huge
improvements. She is a happy girl most of the time. She has great
smiles and laughs. She also has been known to throw some pretty good
tantrums. I think that has a little bit to do with being two and a
little bit to do with Sotos.
We would love to go to the Sotos conference in Arlington as well, but
Grace will be a flowergirl in my nieces wedding that weekend, so it
won't work out.
Lisa
> > Wow, Naja did the same thing. I thought I had a large family but you have me beat. I have 5 kids. Naja was the last. Thats funny about the word Zombie. lol I can only imagine. She loves the computer and electronics. She also has her favorite tv shows. She enjoys, Curious George, Super Why, Sponge Bob (not sure where that came from), Sesame Street and Playhouse Disney. She totally enjoys the playground. I would love to attend the Sotos conference in Arlington. Unfortunately I am afraid to fly. :(......- Hide quoted text -