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MikeC
04-02-2012, 08:57 AM
Hello,

My wife had noticed that she could feel his ribs on one side better than on his other side on the little guy. She mentioned it to our ped but he kind of brushed it off. We sent him to Physical Therapy for Torticolis and a bit of a flat head and they noticed there. While he has made great improvements with the torticolis and the flat head when we took him to a neurologist he asked us to get x-rays. I got a phone call last week that he has Scoliosis with a 50 percent curve and a hemivertibrae. We were told that the Dr ordered an MRI but that isnt until April 12th. So in the mean time I am freaking out. I did the google thing and found out about all these other things that could be wrong with him. I know bad idea. I was a neurotic dad to begin with. He is our first and we love him so much. You would never know anything is wrong with him based on the way he acts. He is probably the happiest baby I have ever seen. All he does is laugh and smile.

I'd appreciate any support or thoughts anyone can offer. I am always thinking of the worst case scenario which is driving me a bit crazy. We do live near DuPont Hospital in Delaware which is a great childrens hospital so that does make me feel a bit better.

Thanks for any thoughts or support!

Doreen1
04-02-2012, 09:19 AM
Welcome to the forum. I'm sure you will receive great insight/advice from many parents who have children with scoli. There is hope! Many parents have had fantastic experiences with Shriner's Hospitals across the nation. Praying for your little guy, you and your wife.

Warmly,
Doreen

leahdragonfly
04-02-2012, 10:12 AM
Hi Mike,

I am really sorry to hear about your little guy. I am sure this comes as quite a shock. The best thing you can do for your son is find him the very best medical care for his condition, which is pretty unusual. Many orthopedists and even pediatric spine specialists will have little to no experience with congenital scoliosis such as your son's. You may have to travel for this. I would strongly recommend you get in touch with Shriner's Hospital in Philadelphia, which is a very top-notch center for scoliosis in very young children. The care there is absolutely second to none, and although it may sound shocking at first to have to travel there, you will not be sorry you did.

I know it is terrifying to read on the internet about possible related conditions. I think we parents all do it, because we love our kids and are worried for them. The best way to quell those worries is to get your son tested for the other related conditions. I think commonly babies/young kids with congenital scoliosis have echocardiogram (ultrasound) of the heart, which is painless and non-invasive, as well as kidney ultrasound (again, painless and non-invasive). Your pediatrician should be able to arrange for these referrals, and if he brushes off your worries, it is time to switch to another pediatrician.

There is another family here whose toddler daughter was recently diagnosed with hemivertabrae. Here is a link to that thread which you may find informative: http://www.scoliosis.org/forum/showthread.php?13197-New-Here-with-Recently-Diagnosed-Toddler&highlight=toddler

The spine program at Shriner's Philadelphia has a very wonderful PA, Janet Cerrone. She is one of the nicest people I have met in the course of my daughter's treatment, and she is very responsive to parents, as well as very knowledgeable. If you e-mail her she will respond within less than a week usually. Her e-mail is janetcerrone@comcast.net .

Best of luck, and please do let us know how things are going.

mariaf
04-02-2012, 10:47 AM
Hi Mike,

Welcome – first of all, big cyber hugs to you and your family. You will get through this.

Gayle has given you some excellent advice so far – in fact, a lot of what I would advise you to do can be found on the other thread Gayle mentioned about another recently diagnosed child – I would suggest you read that as well.

The single most important thing I would tell you is to find a doctor who treats this type of scoliosis specifically (most do not). The majority of scoliosis doctors treat your typical scoliosis patient – teens, pre-teens, etc. – and therefore mostly treat patients with things like bracing and fusion – which are NOT appropriate here.

I will try to make a long story short – my own son was diagnosed before his 2nd birthday. We were referred to a very well-respected orthopedic specialist in NY – unfortunately she did not routinely treat cases of infantile or juvenile scoliosis. My son was braced for a few years and finally, by chance, we found Shriners in Philadelphia a few years later. I don’t want to write a novel here (but feel free to e-mail me – see my signature for address), but I will tell you that we walked into Shriners in December of 2003 and NEVER went back to our former ortho. This is what they do – cases like this, the ones most doctors don’t see. My son just turned 13 and is doing very well. For the past 8 years, I have not allowed anyone else to treat him except the team in Philly.

Please e-mail Janet or call 1-800-281-4050 and ask for her extension. She usually returns calls and e-mails in 24-48 hours. She is incredibly knowledgeable and very, very nice. If you like, I can even give her a heads up that you will be contacting her.

Best of luck and please keep us posted – and don’t be shy about e-mailing me – if you wish to chat, I’ll e-mail you my phone number.

rohrer01
04-02-2012, 11:29 AM
I don't have any advice to give, since I have not been in your shoes. I just wanted to warmly welcome you to the forum. You will get lots of advice and empathy from parents dealing with similar situations. I'm sorry this happened to the little guy. Of course you love him so much! My advice for now, while you are waiting, is just enjoy him and play with him. They are only babies for a little while! Mine are all grown and I wonder where the time went! With the advances they've made for congenital scoliosis, I have every confidence that things will be a-okay in the long run, but it's going to be a difficult journey. Just love, love, love him the whole way through! It was already mentioned, but these parents that went to Shriner's in Philly have had nothing but the best to say...

Again, WELCOME!
Rohrer01

MikeC
04-02-2012, 01:33 PM
I really appreciate everyone's input and support. We get the MRI next week. After that they should have a better idea of his diagnosis and what is causing the Scoliosis. I guess after all of that we will talk about treatment and get other opinions. I will definitely talk with Shriners. Fortunately I live 10 minutes from Dupont in Delaware and only 40 minutes from Shriner's. But i would travel to the end of the world if it would help my son. I actually may email the women at Shriner's today.

MikeC
04-02-2012, 07:45 PM
Going to talk to Janet Cerrone tomorrow. I am really looking forward to it. Thanks for everyones input. Here is a vid of the little dude

http://www.youtube.com/watch?v=IzESf0-vfIY&feature=g-upl&context=G2650150AUAAAAAAAAAA

Pooka1
04-02-2012, 08:16 PM
Such a happy baby! He's so wonderful! Thanks for posting that.

Sharon

rohrer01
04-02-2012, 09:07 PM
Such a CUTE video!!! Absolutely adorable baby! Thanks for sharing. You have every reason to be proud parents. :-)

mariaf
04-02-2012, 09:43 PM
OMG, what a cute baby!!! And that laugh is contagious - enjoy him!!

titaniumed
04-02-2012, 11:19 PM
That little guy has a great attitude....he can come camping with Uncle Ed anytime. (smiley face)

Your Neurologist made a good call.....get copies of his x-rays burned to disc for the future, they are your property.

Try not to freak out, these things are usually harder on the parents, and its not your fault. These things happen.

Be sure to keep in touch with us. All of us are scoli family.

Ed

Singer
04-03-2012, 06:11 AM
He is the cutest baby ever! Best wishes to you as you make your way through this...you'll find a ton of support here.

leahdragonfly
04-03-2012, 09:44 AM
Hi Mike,

Thanks for sharing that video clip--what an adorable, happy baby!

I am glad you'll talk to Janet today. I am sure she will be very helpful.

We are here for you,

JenniferG
04-03-2012, 02:28 PM
Welcome to the forum. What a beautiful, happy boy! Best of luck to you all.

MikeC
04-03-2012, 05:25 PM
Thanks again everyone. Spoke with Janet and set up an appointment to meet with her and a Dr. Really looking forward to it. Thanks for the referral. I also found out that Julian's hemivertebrae is his t5.

MikeC
04-17-2012, 11:30 AM
We did the MRI last Thursday and meet with the Dr tomorrow. I am a bit nervous

leahdragonfly
04-17-2012, 05:15 PM
Hi Mike,

Glad to hear the MRI is done. Try to hang in there until the dr's appt tomorrow, one step at a time. Enjoy Julian's daily milestones because this time really does go by so fast.

Please do let us know how tomorrow's appointment goes. When do you go to Shriner's?

Take care,

rohrer01
04-17-2012, 05:25 PM
Please keep us informed. I can safely say we are all with you on this to the best of our abilities. You already "know" what is going on. The MRI will just reveal greater detail that the doctor can go over with you. You wife is one good mama to mention this at his drs. appointment. Be glad you found it now and not later. That gives you a head start that many parents never got the chance to have. Wishing you a good appointment tomorrow.

Rohrer01

MikeC
04-19-2012, 12:26 PM
Well we found out he has infantile idiopathic rather than congenital. So I believe that is easier to treat. The Dr even said that 20 percent of infants correct themselves with no treatment. But he recommended a brace or a cast. We meet with Shriners on Tuesday. I already feel a great sense of relief.