Hello, want to introduce myself and my son Jonas to this board for 1st time :)

[Guest guest]

Hello,

My name is ,my wife's name is and we are the proud

parents of a beautiful 23 month old son who's name is Jonas.

suggested I post on this board, for there are wonderful people on

here who could help us and also understand what my son is going

thru. Jonas was born 1/12/07 at 10 pounds 11 ounces by c-section (my

wife said " thank god foe c section lol). Was happiest day of our

lives. Being first time parents, we didnt realize that Jonas had any

developmental issues untill his 4 month appointment, when our

pediatrician suggested we go for a cat scan of his brain (totally

missing the very obvious scoliosis issue) since my son had very poor

head lag(couldnt hold his head up) and poor muscle tone. After the

cat scan, he was initially diagnosed with hydrochephalus (water on

brain) and was told he would be " mentally retarded and physically

handicapped " . Much to our emotional horror, we cried all weekend

reading up on this condition preparing ourselves for brain shunts

etc. We (thank god) went to a neurosurgeon in Albany NY to have to

tests read along with an MRI, and he told us that he was

misdiagnosed and that he was fine other than delayed in physical

development and showed signs of scoliosis. After a huge sigh of

relief, we were referred to a PT and an OT where he got therapy at

our home 3x a week. Reading a prior post, our son didnt roll over

till @ 9-10 months, and could even sit up on his own until @ 7

months. I strongly recommend Early Intervention in your area and

qualify for PT or OT. Meanwhile we went to a Dr Karl in Albany for

him to be looked at for his scoliosis. Well, Jonas was found to have

a 44 degree curve of the spine and a rotation of hi ribcage( I

apologize, im still learning about this and dont know all the

medical phrases yet). He suggested we get genetic testing(tests were

fine) and come back in 3 months. After the 1st misdiagnosis with the

brain issue(we switched pediatricians after that!) we obviously

wouldnt take any one opinion and went to shriners in Mass. for a

second opinion, and 1st trip they had similar results (altough 1st

xray was lying down if you can believe that and came up much less,

2nd trip they were going to go sitting I said they had to take it

standing according to my other doctor so they did). Shriners had

a " wait and see " attitude, saying theres a slight chance he

could " grow out of it " and to come back in 3 months. We went back to

Dr Karl 2nd time and there was no chance still 44% and at this point

he suggested to wait till he was walking and to expect preventative

casting and future surguries involving rods along spine etc. We went

to shriners 2nd time they had similar opinion, but seemed a tad

frustrated that we were going to different doctors and suggested we

make a decision on who was going to treat jonas. Dont get me wrong.

shriners is wonderful and people there are very nice, just got the

impression that the doctor there felt we were wasting his time while

on quote " there are other patients with no insurance waiting a long

time to be seem, i dont know why you would travel so far when you

have excellent health coverage and a doctor closer by that can see

him " So, now with no definate direction, we went to see a specialist

my wife found online in manhattan. He agreed with the diagnosis of

Dr Karl, but suggested that we bring him to Shriners Philly to see

if he would benefit from this newer VEPTR procedure. This was in

september 2008, but said also to wait till he was walking strongly

(which he is just now in december). So we were about to make an

appointment for Shriners in Philly when thru some searching thru

google I found ISOP (THANK GOD!) Wish I found this site/group 18

months ago. Talked to heather(thanks) and she suggested Dr Rubery or

Dr at U Rochester. I called and they suggested for us to

send up xrays/mri report/dr Karls report to them asap to see if hes

a candidate for Dr Methas corrective casting method. So My wife sent

info out today, and we are awating their response at this point.

Bottom line being a newbie to this...There's virtually no concrete

knowledge on infantile scoliosis in our medical " experts " out there

which is obvious to me now because if i didnt stumble onto ISOP's

website, I wouldnt of even known theres a potential non invasive

treatment. God bless you heather for putting all the hard work into

making this information available to parents like us. You mave have

very well have greatly impacted the quality of our son's life. I

thanked you over the phone, and you said dont thank me thank Dr

Metha etc. but like I said if it werent for you my son jonas and im

sure many other beautiful children out there would of had to endure

either the wrong treatment or the more painful/less efficient one.

Thanks again, and I will be active on this board. You and your site

were the best Christmas present our family got this year. You family

will be in your prayers this holiday , as well as all the members

here. Take care