Hello,

I'm new to the NSF and am so glad that I've found this website and forum. I've been reading postings all night and am sitting here crying out of frustration, confusion, sadness for others but out of elation as well that I've finally found some helpful, useful information.

I have a beautiful 9 month old son, Liam who was diagnosed with infantile scoliosis at 4 months. His diagnosis came by accident really - he went to the Ped. for a check-up and the Dr. noticed that his head lag was still pretty bad for a 4 month old, but Liam was born a month early, in the NICU for 3 weeks and has torticollis so I was told not to really be concerned but to have a PT evaluation (Liam was also exhibiting low muscle tone and development in his upper body and hated "tummy time"). So, we went to the physical therapist and she had Liam down to the diaper on his tummy and looked at me and asked, "Does Liam have scoliosis?" I almost died! What?!?!? No one had ever mentioned anything to me about this before - I couldn't believe it!! When she pointed the curve out to me I was then upset that I hadn't noticed it before either. I immediately took Liam to another Ped. the next morning and he sent us for an x-ray with STAT results. Then the phone call came later that day - Liam had a 30 degree thoracic curve. I wanted to die. I cried for days. Then we were told how "rare" this was for an infant, boy to have scoliosis and usually it was associated with some other disorder or syndrome. Great!! How did this happen? Why us? Why my baby?! I felt like I was in a twilight-zone!

Liam saw an orthopaedic surgeon in Sept. 2005 at Children's Hospital of Michigan and we were very pleased with what he had to say. We were told that 70% of infants grow out of this on their own and we would just have to wait and see what happend - come back in 4 months for another x-ray. In the meantime we were told to have boney abnormalities ruled out, syrinx, tethering of the spinal cord, see a geneticist, neurologist, neurourgeon, etc. From Sept. to Dec. we've been to every specialist under the sun to have "things" ruled out and thankfully everything has come back ok. No syndromes, disorders, tumors, boney abnormalities, hemi-vertebrae, genetic issues (even though 2 family members on my husband's side have scoliosis - we were told that's not significant enough). We were just going to have to deal with the sole issue of scoliosis. Well, Liam continued on with PT and we thought evreything was getting better.........

Liam saw another ortho. surgeon on Dec. 23 (the first Dr. left the state) and I was expecting to hear that the curve had gotten better or at least stayed the same. Unfortunately, Liam's curve progressed from 30 degrees to 100 degrees in just 3 months. I cried for 2 hours - couldn't even leave the office. Then the Dr. started talking about how she wanted to put Liam in traction/halo in early Spring an then do surgery to place a rod soon there after. Oh my God!!!!!!!! I can't even think straight!!!! I don't know what to do - I know I want another opinion but don't know where or with whom. This is where I NEED HELP PLEASE!!

I'm sorry for writing a novel here, but it's just so invigorating to have others to talk to that are experiencing some of the same things. Please, I need all the info. I can get. I'm willing to take Liam where ever I need to go - I just want him to be seen by the best and get the best treatment options available to him. Where is that? Any suggestions? What are my options? Is rod placement the only one? What are the long term effects? We were told Liam would need several surgeries from now until he's about 8 to keep replacing the rods as he grows and then are around 8 or so they would fuse his spine. I've also heard about a procedure called VEPTR (titanium rib placement) - anyone heard of that? Is Liam a candidate?

I know I'm asking a million things here, sorry! I'm just so overwhelmed. If anyone, anywhere has any suggestions or where I should start I would really appreciate it, THANK YOU!!!!!!!!!! I'm sooooo desperate and have a small window of about 3-4 months to work with. Liam's lungs are being conpressed and he's already been hospitalized twice with pneumonia. I know something has to be done - but what's best for my baby?

Thank you to anyone and everyone that can share some info., suggest Dr.'s, procedures, insights, hugs even - it would be greatly, greatly appreciated. Please feel free to e-mail me at moosie45@hotmail.com. Thanks again and God Bless all of you!!

Jennifer - Liam's really concerned Mommy