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

[Guest guest]

Hi and ,

I am happy to meet you. I am new here also. It is great that you have found

help. I know

going to doc to doc is trieing. My daughter is in Early Intervention also. A

great service.

Well my daughter andria, and me have our first appointment on Christmas

eve.Would

good luck, and good bless.

Josh

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> Subject: Hello, want to introduce myself and my son

Jonas to this

board for 1st time

> To: infantile_scoliosis

> Date: Thursday, December 18, 2008, 10:23 AM

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> Hello,

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

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

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

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

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

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

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

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> developmental issues untill his 4 month appointment, when our

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

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

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

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

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

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

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> reading up on this condition preparing ourselves for brain shunts

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

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

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> misdiagnosed and that he was fine other than delayed in physical

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

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

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

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

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> months. I strongly recommend Early Intervention in your area and

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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> frustrated that we were going to different doctors and suggested we

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

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

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

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

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

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

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

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

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

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

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

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

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> appointment for Shriners in Philly when thru some searching thru

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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> here. Take care

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