http://www.doctoryourself.com/epilepsy.html

Interesting website.
Kat

I wrote this in reply to someone in the apraxia listserv. Thought I'd share it
here as it kind of explains "where we're at" in this whole process.

Yes, we should never give up. It is difficult, however, to know how much to try
and when to pass. I read many books, took 5 day courses, tried diet,
chelation,biomed, tomatis, homeopathy, flew our son to institutes/therapies
across the country and more. Improvement has been slight but hardly can credit
be given to any of those attempts. Am I glad we tried all that? Yes! Would I
recommend others do it? No. How can I recommend these things when it didn't work
for our
son?! Basically we're now doing our own version of therapy, using our better
judgment and feel best about it. I read what others are trying or are suggesting
and either I've BTDT or if I haven't, I am skeptical. So many books written to
say "this was key for our child's development" and we give it a try, spending
loads of money and time thinking it will do the same for our child, but to no
avail. I am not saying you shouldn't try many things but, in the case of our son
(age 12), we are more on the other side of it all - having tried so much that we
now prefer to go with our own instincts. Have we given up? No way! We will
always work to help our son develop but probably never go the "alternative
medicine" route again.
Claudia (Johnny almost 12)

Hi, everyone.  My baby is 11 months old and we will be seeing a neurologist this
week Tuesday.  I have a list of questions and was wondering if anyone has any
important questions to ask the doctor that I might have missed?
I called the geneticist and asked more about Sotos Plus she said she would
inform the neurologist (in the past none of the doctors got the dx).
Thank you in advance.
aj (mom to Ethan)

----- Original Message -----

From: Kellie Siers

To: Sotosyndrome@yahoogroups.com

Sent: Friday, November 13, 2009 10:32 AM

Subject: [Sotosyndrome] Daniel's MRI results

 

 

Results were normal except for swelling in one of the knees. They are going to try and put blue sleeves on them to help with the swelling.  NO surgery at this point.

 

 

 

Kellie
Rotten Rottie Mama

---

Internal Virus Database is out-of-date.
Checked by AVG.
Version: 7.5.560 / Virus Database: 270.12.26/2116 - Release Date: 5/15/2009 6:16 AM

Just wondering if anyone on this group lives in Japan.
My mother is visiting Kobe, Japan.
aj

Thanks, Tammy.
SOrry so late in responding (computer broke down).
Ethan is doing well.
Went to the doctor last week and he had rosiola (sp?), Thrush, and he was
teething.
ANyway, thank you all for the advice and help.
aj (ethan 11 months on Friday)

--- In Sotosyndrome@yahoogroups.com, "Tammy Burtt" <tburtt@...> wrote:
>
> Ask away, that is why we are here.
>
>   ----- Original Message -----
>   From: A. Jay
>   To: Sotosyndrome@yahoogroups.com
>   Sent: Sunday, November 01, 2009 3:55 PM
>   Subject: Re: [Sotosyndrome] Dental Appt.
>
>
>
>   That's the hard part of being a mom with a child who has Sotos Syndrome...
balanceing what babies his age might have and the fact that he has a
syndrome....that's why I ask so many questions ....thank you all for tolerating
my 101 questions... I really could go on forever ...
>
>
>
>
> ------------------------------------------------------------------------------
>   From: Tammy Burtt <tburtt@...>
>   To: Sotosyndrome@yahoogroups.com
>   Sent: Sun, November 1, 2009 4:15:03 AM
>   Subject: Re: [Sotosyndrome] Dental Appt.
>
>
>
>   You are forgetting that our kids are not like the typical child...they do
get incredibly high fevers
>
>     ----- Original Message -----
>     From: A. Jay
>     To: Sotosyndrome@ yahoogroups. com
>     Sent: Sunday, November 01, 2009 2:33 AM
>     Subject: Re: [Sotosyndrome] Dental Appt.
>
>
>
>           I wonder what else it could be?
>
>           --- On Sun, 11/1/09, jklafleur <jklafleur@aol. com> wrote:
>
>
>             From: jklafleur <jklafleur@aol. com>
>             Subject: Re: [Sotosyndrome] Dental Appt.
>             To: Sotosyndrome@ yahoogroups. com
>             Date: Sunday, November 1, 2009, 3:00 AM
>
>
>
>             Our doctor has always told us anything over 101 is not teeth.
>
>
>
>             In a message dated 10/31/09 16:15:58 US Mountain Standard Time,
ajet7373@yahoo. com writes:
>
>                     Since, we are on the subject of teeth....
>                     My 10 month old son has had a fever for the past 2 1/2
days (100 - 103 degree F). He has a fever, lack of appetite and is really
sleepy.  I think it's the molar's coming out....the upper-back right looks
purple and is swollen...
>                     Have any of you had the similar teething experiences?
Seems like he can handle a lot of pain. I have given some Tylenol and some of
those teething tablets to help with the fever....  I wonder how long the fever
stays?
>                     aj (mom to ethan)
>
>                     --- On Tue, 10/27/09, donnarlee@comcast. net
<donnarlee@comcast. net> wrote:
>
>
>                       From: donnarlee@comcast. net <donnarlee@comcast. net>
>                       Subject: Re: [Sotosyndrome] Dental Appt.
>                       To: Sotosyndrome@ yahoogroups. com
>                       Date: Tuesday, October 27, 2009, 9:10 PM
>
>
>
>                       agreed. I don't know that it ever hurt anyone.
>
>
>
>                       ----- Original Message -----
>                       From: jklafleur@aol. com
>                       To: Sotosyndrome@ yahoogroups. com
>                       Sent: Tuesday, October 27, 2009 11:55:58 AM GMT -07:00
US/Canada Mountain
>                       Subject: Re: [Sotosyndrome] Dental Appt.
>
>
>                       Grant has lost 7 teeth and swallowed all but 1....its
not ideal but I am not sure what harm it caused.
>                       Jeanne
>
>
>                       -----Original Message-----
>                       From: ccnvcabin@aol. com
>                       To: Sotosyndrome@ yahoogroups. com
>                       Sent: Tue, Oct 27, 2009 10:29 am
>                       Subject: [Sotosyndrome] Dental Appt.
>
>
>
>                       Well I guess the saying is true:  How ever old your
child is (in months) when they get their first tooth is how old (in years) they
will be when they start to loose their teeth.
>                       Hunter was 4 1/2 months old when he got his first tooth
and this morning the dentist said he has 2 loose teeth on the bottom.  Hunter is
4 1/2 years old.
>                       She said to keep and eye on him so he doesn't swallow
the teeth when they do come out.  That was a horrible thing to tell me.  Now I
will be constantly worried and constantly looking in his mouth.
>                       On a good note, he didn't have any new cavities.  YEAH!
!
>
>                       -Tammy C (Hunter age 4, Sotos-Like)
>
>
>
>
>
>
>
>
> ----------------------------------------------------------------------------
>
>
>     Internal Virus Database is out-of-date.
>     Checked by AVG.
>     Version: 7.5.560 / Virus Database: 270.12.26/2116 - Release Date:
5/15/2009 6:16 AM
>
>
>
>
>
>
>
> ------------------------------------------------------------------------------
>
>
>   Internal Virus Database is out-of-date.
>   Checked by AVG.
>   Version: 7.5.560 / Virus Database: 270.12.26/2116 - Release Date: 5/15/2009
6:16 AM
>

So funny, Donna!
Claudia

--- In Sotosyndrome@yahoogroups.com, donnarlee@... wrote:
>
> Over the years I've heard all your stories of having to put padlocks on the
refridgerator and things like that. Zak ate a lot when he was smaller, but we
never went through anything that bad. And it was always meat he wanted, or
salad...3 helpings of salad. Turns down candy alot.
>
> Yesterday though he did something that reminded me of some of those stories
and I thought I'd share with you all.
>
> I was busy with something and gave him a bowl of ice cream before bed. This is
his nightly ritual. This time I left the room. The halloween candy was still
sitting out. He's had a candy bar or two every once in a while sine Oct 31st,
But he's never been a big candy eater. We always have halloween candy that makes
it through until the next year. I came back into the room about 20 minutes later
wondering why he hadn't finished his icecream yet. there in the bowl of totally
melted icecream were 4 miniture chocolatebars and several M&Ms. I guess he was
doing Mix-ins on his own!. Well I wasn't extrememly happy that he was doing this
with out asking for permission but I was proud that he hadn't needed to ask for
help getting the papers off. Then I noticed what was strewn all across the
table...13 EMPTY CHOCOLATE CANDY BAR WRAPPERS! THAT MEANT HE HAD ALREADY EATEN 9
OF THEM!
>
> This is probably old news to most of you. I actually thought it was funny, but
didn't want Zak to know that so I had to scold him. He's so funny, he'll go for
a week not wanting to eat much at all, then he goes on a rampage and eats
everything in sight. But this was the first time he's scarfed out on candy like
that. At 14 he's finally developing a sweet tooth.
>
> donna (Zak14)
>

Thank you to each of you with your kind words regarding Johnny's recurrence of
epilepsy (which never went away in the first place, it was just controlled!).
Yes, Donna, you're right, I can't let the doctor "bully" me. Actually I don't,
he's pretty used to me and I let him say what he wants and I tell him if I agree
or not, but I must say I DO agree with him now! Sometimes reading too much as a
"lay person" (non-professional) can give us a sense of empowerment and
knowing-more-than-they-do and it is not always good. Thank you, Irene, for your
input. Yep, it is important to stick to the medication that is keeping his
seizures in check! We're back to Epival now and eventually will add Trileptal
which he was taking as well and it was working. OK, we live and learn!
Claudia (Johnny, almost 12)

--- In Sotosyndrome@yahoogroups.com, "Irene Talarico Pinto" <psirene@...> wrote:
>
> Hi Claudia!!
> I am very sorry to hear the news.
>
> We have talked so many times about medications for epilepsy.  And I thought
you were definetly convinced about the necessity of those drugs.  My daughter
had many different trials on decreasing the dose,  or changing the drug, and
every different try   triggered the same result: grand mal seizure.
>  Perhaps you might remember that she is a young adult now, and she had also
been seizure free for 3 years, until I tried to lower the dose, because she had
been free during that time!  It´s a paradox:  you see them good, and you
unconsciously think the medication is useless.  And that is the worst thought
for epilepsy.
> On the other hand, I must tell you that risperdal triggers seizures on people
who are prone to epilepsy, most of all if there is nothing to impede the effect.
> Do not worry, get back to the same medication and the same dose and he´ll be
fine again.  When you find the exact dose and drug, you must stick to it,
changes are not  the best choice.
> All the best.
> Irene.
>
>
>   ----- Original Message -----
>   From: hubby4kids
>   To: Sotosyndrome@yahoogroups.com
>   Sent: Tuesday, November 10, 2009 17:18
>   Subject: [Sotosyndrome] seizures
>
>
>
>   Just thought I'd up-date you on Johnny's seizure situation. He is almost 12
and has had seizures since age 5 or 6. For over 3 years he has not had a single
seizure while still taking all the meds. So I took him to a homeopath last April
and slowly he had us wean him off the meds. I took Johnny to see his
neuro-pediatrician in Oct and he was not happy that Johnny was off all meds - as
of Oct - (except he still takes risperdal but that's not for epilepsy). Well,
yesterday Johnny had a grand mal seizure (the big one!) and that was awful. He
has never had that type but yesterday he did. I called the doctor who gave me a
strong bawling out and I told him he was right. All this to say - I guess I'm
done with homeopathy! We've given it a lot of tries in various areas of our
son's development and have had no evident results. Now with such a serious
matter as epilepsy I guess I'll stick to the "experts."
>
>   Claudia (Johnny, almost 12, Classic Sotos,non-verbal)
>

Today we visited the orthotic who made Ben's new back brace. Apparently he is
doing great in it. It is 'normal' to see a slight decrease in appetite, slight
loss of wieght, and a general 'skinnier' look. His body is repositioning and
adjusting. Kids have a floating rib which is why it looks funny in the brace
sometimes. It's also okay that his rib in the front moves over it (obviously we
don't want it to but it isn't a need for panic). He said to mention the decrease
in eating to the ortho surgeon when we go incase it is still a problem. He also
said it's okay that he's complaining slightly about his lower stomache. The
brace puts a lot of pressure in that region and he said when we take it off it
may be sore or even itch. Score one for Benjamin I guess. Whew! Now we go to the
new ortho surgeon on December 16th. Hopefully we will like him better than the
other quack.

Tomorrow we go in for Benjamin's evaluation into the school system. He is in
transition between early steps and 3 year old parish services. Wish us luck. I
am a bit of a basketcase! I will be glad when it is all over!

Thanks again for all the scoliosis info. I am sure I will need more. The
orthotics doc said that they usually start talking surgery at 35 degrees but
since he is so young they will probably hold off. I know more than one of you
commented your child was around 50 degree (curvature) so I was shocked when he
said 35. Benjamin is 32 and 34 Top and Bottom....

Tame

----- Original Message -----

From: hubby4kids

To: Sotosyndrome@yahoogroups.com

Sent: Tuesday, November 10, 2009 17:18

Subject: [Sotosyndrome] seizures

 

Just thought I'd up-date you on Johnny's seizure situation. He is almost 12 and has had seizures since age 5 or 6. For over 3 years he has not had a single seizure while still taking all the meds. So I took him to a homeopath last April and slowly he had us wean him off the meds. I took Johnny to see his neuro-pediatrician in Oct and he was not happy that Johnny was off all meds - as of Oct - (except he still takes risperdal but that's not for epilepsy). Well, yesterday Johnny had a grand mal seizure (the big one!) and that was awful. He has never had that type but yesterday he did. I called the doctor who gave me a strong bawling out and I told him he was right. All this to say - I guess I'm done with homeopathy! We've given it a lot of tries in various areas of our son's development and have had no evident results. Now with such a serious matter as epilepsy I guess I'll stick to the "experts."

Claudia (Johnny, almost 12, Classic Sotos,non-verbal)

----- Original Message -----

From: Pamela LeProhon

To: Sotosyndrome@yahoogroups.com

Sent: Tuesday, November 10, 2009 2:50 PM

Subject: [Sotosyndrome] To Claudia Johnny

 

Just thought I'd up-date you on Johnny's seizure situation. He is almost 12 and has had seizures since age 5 or 6. For over 3 years he has not had a single seizure while still taking all the meds. So I took him to a homeopath last April and slowly he had us wean him off the meds. I took Johnny to see his neuro-pediatrician in Oct and he was not happy that Johnny was off all meds - as of Oct - (except he still takes risperdal but that's not for epilepsy). Well, yesterday Johnny had a grand mal seizure (the big one!) and that was awful. He has never had that type but yesterday he did. I called the doctor who gave me a strong bawling out and I told him he was right. All this to say - I guess I'm done with homeopathy! We've given it a lot of tries in various areas of our son's development and have had no evident results. Now with such a serious matter as epilepsy I guess I'll stick to the "experts."

 

Claudia (Johnny, almost 12, Classic Sotos,non-verbal)

 

 

 

Dear Claudia,

I am sorry to hear Johnny had such a bad seizure.  My sister used to have seizures (hydrocephalus with shunt) and those smaller ones were very scary for me to see, I was a kid when those happened.  You and Johnny are in my thoughts and prayers. 

Pam  

---

Internal Virus Database is out-of-date.
Checked by AVG.
Version: 7.5.560 / Virus Database: 270.12.26/2116 - Release Date: 5/15/2009 6:16 AM

Just thought I'd up-date you on Johnny's seizure situation. He is almost 12 and
has had seizures since age 5 or 6. For over 3 years he has not had a single
seizure while still taking all the meds. So I took him to a homeopath last April
and slowly he had us wean him off the meds. I took Johnny to see his
neuro-pediatrician in Oct and he was not happy that Johnny was off all meds - as
of Oct - (except he still takes risperdal but that's not for epilepsy). Well,
yesterday Johnny had a grand mal seizure (the big one!) and that was awful. He
has never had that type but yesterday he did. I called the doctor who gave me a
strong bawling out and I told him he was right. All this to say - I guess I'm
done with homeopathy! We've given it a lot of tries in various areas of our
son's development and have had no evident results. Now with such a serious
matter as epilepsy I guess I'll stick to the "experts."

Claudia (Johnny, almost 12, Classic Sotos,non-verbal)

He had surgery for hydrocephallus related issues not for his back. When he wore
the Charleston bending brace (curved him in the shape of a banana...lovely) at
night it seemed to help. His back improved 3 degrees give or take human error.
When he was xrayed in the brace it changed the curve to an 11 degree curve so
they knew it was working.  He was wearing that brace for a few months and
basically he outgrew it when we were in Guatamala so we were screwed. Since he
was without a brace and his back got worse they chose another type. It's also
called a charleston brace. I live in south LA so they frown on casts here due to
weather. His brace is SUPER light wieght. We haven't had an xray in it yet. WHen
we do, if it isn't correcting the curve by a certain degree in the brace they
will have to redo it. In the meantime I am hoping it holds it's own. His big
curve was initially on the bottom. The doc said it's the natural response of the
body to mimic the curve in the opossite way... so now that that is happened, who
knows what is next. Physically speaking its in allignment --just not straight.
He is growing so fast I think they need to make a new one. We will see what they
say tomorrow at 8am! I am going to try and get him started in hippotherapy. I
think that will help his tone. There is a professional PT therapist that does it
on a weekly basis for $25 a session. He would enjoy it and also it may help. I
hate seeing him go through it also on top of all the other physical junk he
deals with. It's actually the first time I have allowed myself to cry in moons.
The day he got it I cried the entire way home after putting him in his car seat.
It broke my heart to watch him try and pick up his toy in the doc office. He's
better now. He can climb on and off the couch, squat down, pretty much
everything he could do before but with more difficulty if that's possible. The
first weekend he wore it he would fall down and get stuck and you could hear him
hollaring "Help, Stuck" Hmmmm...do you laugh or cry about that? I did both. At
the moment he continues to be my little rock star and has learned to cope with
the brace. He actually will ask me to put it on if we are giving him a break so
I wonder if his back bothers him. I am realistically expecting to have surgery
sooner or later. I do want to take him to a specialist in texas that invented a
brace for his daughter who has scoliosis and hasn't ever had surgery. I can
t remember the name of the brace. I will look it up. I think it may be metacast
or something. It uses some kind of special technology to make it. Like a robot
3d image. Alot of good that would do though since Benjamin grows so fast I
guess. I could kick myself in the butt for traveling all over Guatamala while he
outgrew his brace. We drug that thing around all summer. Oh well. Maybe his back
would have gotten worse anyway. The other brace was more intense and hard and
sturdy. This one is flexible kind of. I wonder how it can possibly work and try
not to be a basketcase about it. I know there is question to weather they do
help or not. I just hope it holds in place for the next 5 years or so. Pants by
the way are another pain in the butt. Not to mention potty training. Are you
frickin kidding me? I am soooooooooooooooo disappointed. He's ready to train but
how on earth can we do it now? I just threw that idea out the window until maybe
summer. He'll be over 3 by then. sigh. It was really hard for me to get rid of
nearly ALLLL of his clothes. It was very sad for some wierd reason. Anyway, we
will see what happens next! TRHanks for the info.

Tame

--- In Sotosyndrome@yahoogroups.com, Michelle Sparks <myjourney1975@...> wrote:
>
>
> Tame,
>
>
>
> My 19 month old son, William, has a 55 degree curve. They thought it would fix
itself, but it continues to get worse. It is so hard to watch him go through it
all. He actually had a plaster cast put on. They were able to push his hump in
(which protrudes a lot) and were very optimistic. Unfortunately, I thought it
was too tight, brought him to the ER, where they knew nothing about the cast,
which is pretty new to the US, and they were concerned so they cut it off. He
had it done a second time and the doc put it on too lose. He's scheduled to have
it on again on 12/14. We're keeping our fingers crossed that everything goes
fine this time. He has to go under anastesia every time AND he has to have it
adjusted every three months.
>
>
>
> Eventually he will need the rods put it, put they don't like doing it in
little kids because their bones are more likely to fuse. The cast looks like a
tank top. When he has it on he looks like a football player. The whole thing
just breaks my heart and I hate to know others are going through the same
experience.
>
>
>
> We've looked into many options, although they are few and far between, and the
cast seems to be the best option for William at this time.
>
>
>
> We live in the bay area in California and luckily our insurance, Kaiser, does
the cast. If not, we would have to go to the Shriners in Salt Lake City....which
is not totally rulled out at this point.
>
>
>
> Please let me know if I can help with anything else. Unfortunately we've had
to do a lot of research and had a lot of questions answered.
>
>
>
> DONNA:
>
>
>
> I was wondering what type of surgery your son had?
>
>
>
> Take care,
>
> Michelle
>
>
>
> To: Sotosyndrome@yahoogroups.com
> From: donnarlee@...
> Date: Mon, 9 Nov 2009 04:48:27 +0000
> Subject: Re: [Sotosyndrome] Hello to all- need help with scoliosis information
>
>
>
>
>
>
> Tame,
>
> Zak's never had a brace, his curve was too great and in the wrong place for a
brace to work for him. They normally start thinking surgery around 50 degrees.
Zak's got to 84 degrees before they actually did his surgery (he had an "S"
curve as well and some Kyphoisis). I'm a little surprised they had Benjamin in a
brace already. They told me that they normally started bracing at 30 degrees. I
was told by a few doctors that the brace may not be good for kids who have
muscle tone problems though. I don't really have any more answers for you...I do
know how frustrating it is. I was more frustrated that year than any other, when
Zak's back was rapidly changing and getting worse and no one had good answers.
He's now one year and three months out from surgery. It wasn't until after one
year that he got back into riding his bike again. He could do it before that but
just got too tired too quickly or his back would get sore. They told us to do
lots of physical therapy to slow down the scoliosis progression. We went twice a
week for a while and then did a 2 week intensive PT, Chiropratic, and traction
therapy stint in Dallas, for 6 hours a day. It helped for the two weeks, and
actually made alot of change for the better, but it couldn't hold without him
keeping up with 2 hours of excersise and traction per day and Zak
couldn't/wouldn't keep that up for the rest of his life. So frustrating because
nothing we tried stopped the progression. I don't mean to scare you...I just
think it's going to progress with some people and with others it won't. Like
Kellie says, go with your intuition.
>
> donna (Zak-14)
>
>
> ----- Original Message -----
> From: "Kellie Siers" <rottiemamadogs@...>
> To: Sotosyndrome@yahoogroups.com
> Sent: Sunday, November 8, 2009 8:56:49 PM GMT -07:00 US/Canada Mountain
> Subject: Re: [Sotosyndrome] Hello to all- need help with scoliosis information
>
>
>
>
>
>
>
>
>
> Tame,
>
> I don't have much to add about the scolosis. Donna will have that kind of
information.
>
> I wanted to tell you that if your instincts are telling you that something is
"going on" then follow your instincts. You're not crazy. We have our instincts
for a reason. Follow them.
>
> Kellie
> Rotten Rottie Mama
>
>
>
>
>
>
> From: Tame <dazies2001@...>
> To: Sotosyndrome@yahoogroups.com
> Sent: Sun, November 8, 2009 5:10:09 PM
> Subject: [Sotosyndrome] Hello to all- need help with scoliosis information
>
>
>
> Hi. I haven't visited the site since our pilgrimage to Guatamala this summer.
We had a super time. Benjamin started saying mama on the trip and has been
picking up vocab since. Hope everyone is doing great, and if not great, as well
as possible.
> I need some info reguarding scoliosis. We are in the process of changing
doctors. I have finally met a doctor I cannot deal with. Anyway, Benjamin's back
is getting worse. He is now in a brace 23 hours a day and has once again amazed
me with his little trooper attitude. He does well in it. The problem is that he
seems to be loosing tone in his lower back and we have trouble adjusting the
brace so that it doesn't ride wrong on his left lower rib where there is a
space, and it sits high enough on his upper rib cage. I actually witnessed one
of his ribs pop over the top of the brace. Yikes. I know most of the sotos kids
on the site don't have scoliosis issues. I think he is outgrowing his brace
though he has only had it for 2 months. It's a charleston brace I think and has
3 velcro staps in the back. It sits fairly low on his chest. I am taking him to
the orthopedic who made the brace Tuesday. I think he needs another made that is
a little large for him to accomodate his fast growth. He outgrew his last one
which he only wore at night and didn't get his new one for 2 months. In that
timeframe his back got about 5 degrees worse and it had been holding steady and
even slightly improved. I don't want that to happen again. I know they won't
want to make another for him already. Should I get a letter from the geneticist?
What should I do? I thought about taking him to a hospital in Houston for a
second opinion. WHat about his tone? Can we expect it to get worse? Maybe he's
just growing right now, and it seems worse to the naked eye. I wondered too if
he needs a sonogram or something. He doesn't eat much and I don't know if it is
related to his brace. He rubs his lower stomache and tells me it hurts
sometimes. The brace could be realigning everything or he could have internal
issues due to the scoliosis. We have an apt. with the new orthopedic surgeon in
December. I couldn't schedule one before that. He's on a list incase someone
cancels. Our pediatrician thinks the orthopedic who made the brace will refer us
to a neurologist. Why would they refer us to a neurologist? I just feel like
something is going on with Benjamin, but I don't know what. So far on this
journey my intuition has been pretty good- but maybe I am paranoid. I guess we
will see what the orthopedics says on Tuesday about his brace, the way it fits
on his wierdly shaped ribs, and his tone issues. Gosh, if I could only invent a
crystal ball. Let me know if there is anyone out there who can help.
>
> How bad does his back need to get before they do surgery? It's now a big s
curve. 34 degrees approximately on the top and bottom, give or take a couple.
>
> Have a good week.
> Tame
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