Pamela H in Texas Posted March 13, 2015 Share Posted March 13, 2015 Squishy's doctor thinks he has rotational scoliosis and has referred us to a specialist. I was just wondering if anyone else had any experience with/as an infant with scoliosis and what things may look like from here. Quote Link to comment Share on other sites More sharing options...
bethben Posted March 13, 2015 Share Posted March 13, 2015 My son had scoliosis diagnosed first at 16 months old. He probably had it before that time. His was a classic s curve brought on by low muscle tone and a chromosome disorder. He was immediately put into a back brace to correct it and hold him together. At 11, he had two rods put in and extra bone tissue to fuse his spine. By 11, the back brace couldn't hold his curve anymore - there's a degree of curve that a brace just can't hold. They never actually mentioned as he was growing that spinal surgery was a strong possibility. I always knew in the back of my mind and never wanted to "know" so I didn't ask. My son had a lot more going on than just the scoliosis so you may want to take my experience with a grain of salt. If they suggest a back brace, here's my two cents. A back brace can be very restrictive and you may want your child to achieve some developmental milestones before a brace if possible (like walking). Also, with a young child, maybe ask about physical therapy so they can learn to move with the back brace. Strengthening exercises would also help. Also, ask "what would happen if we did nothing". Go with your mommy gut. Our specialist wanted to put my son into a neck brace also. I said no - he was already having issues with looking down to eat or do activities. His quality of life would have been restricted. Turns out that his curve got really bad much further down his back - not anywhere close to his neck. If your gut says no, then talk about alternatives. I'm sorry you have to deal with this. It isn't fun. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted March 13, 2015 Share Posted March 13, 2015 I don't have any personal experience with this in an infant. However, I have read a lot about heritable connective tissue disorders because of a spine problem in one of my dc who needed surgery as a child. Ehlers-Danlos Syndrome Kyphoscoliosis type presents with kyphoscoliosis in infancy. I'm not saying Squishy could have it, but it couldn't hurt to have a geneticist rule it out with a urine test, particularly if you have noticed hypotonia. If there's a chance he could have it, it would be better to know because there can be other problems that can prevented with the right care and treatment. There might be other causes but a geneticist would know about those as well. http://www.ncbi.nlm.nih.gov/books/NBK1462/ Quote Link to comment Share on other sites More sharing options...
Ellie Posted March 13, 2015 Share Posted March 13, 2015 :grouphug: I have not, but I do know many people who swear by their chiropractors in treating scoliosis. 1 Quote Link to comment Share on other sites More sharing options...
pehp Posted March 13, 2015 Share Posted March 13, 2015 I have severe scoliosis, in a backwards S-curve, first detected when I was a toddler. I have a double spinal fusion and rods in my back. I am happy to answer any questions you might have. I agree w/ Ellie re: looking into chiropractic care. Quote Link to comment Share on other sites More sharing options...
Pamela H in Texas Posted March 14, 2015 Author Share Posted March 14, 2015 Thanks! We can't take him to a chiropractor before he is legally ours. Weird rule of CPS, IMO. But I will look into it! This kiddo has had a run of it, all sorts of issues along the way. We are committed though. LOVE LOVE LOVE him. He is such a great little kid! We find out next Friday when termination of parental rights are and then we just have to wait 90 days (or so) from there. His specialist appointment is April 2nd. It is supposed to take several hours as they do various testing and such. They are THE people to see for this though :) We can't SEE an S or C curve, but that doesn't mean there isn't one...just not severe enough to be seen easily by mom. He has a bulge just over his diaper though where the doctor believes there is a rotation of his spine right at the part where the thoracic and lumbar vertebrae are. It has been there from birth, but I kinda talked myself out of it and it wasn't as noticeable to just anyone before he was sitting. Now it is surprising everyone <sigh>. But maybe his is pretty mild? It does seem to have some effect with his motor skills though. I don't know if it is part of the reason for his delays (we blamed maternal drug usage). But it definitely causes some differences now. He rarely rolls the one direction and it looks odd when he does as well as him leaning back and left with his right leg up when he sits. Anyway, so hopefully we'll learn something soon. Quote Link to comment Share on other sites More sharing options...
KatieJ Posted March 14, 2015 Share Posted March 14, 2015 No experience here either, but our chiro,is a peds specialist and it is something he has experience with and feels he can help. So maybe in the mean time get him some physical,therapy. Quote Link to comment Share on other sites More sharing options...
Pamela H in Texas Posted March 14, 2015 Author Share Posted March 14, 2015 Oh....Squishy has had ECI coming since he was just a month old due to delays, gaps, and oddities. But most certainly, we will add whatever we need to as soon as the doctor tells us what to do. I'm hoping the PT who worked with my Monkey can come. Sometimes it takes months to get PT set up with home health. We got lucky with some connections with Monkey so hoping it works out for us again. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted March 14, 2015 Share Posted March 14, 2015 Oh....Squishy has had ECI coming since he was just a month old due to delays, gaps, and oddities. But most certainly, we will add whatever we need to as soon as the doctor tells us what to do. I'm hoping the PT who worked with my Monkey can come. Sometimes it takes months to get PT set up with home health. We got lucky with some connections with Monkey so hoping it works out for us again. The collection of delays, gaps, and oddities with the spine might be explained by the history you mentioned, but it could warrant a visit to a geneticist. Some orthos are aware of this and make geneticist referrals, others just treat the condition the child came in for. 2 Quote Link to comment Share on other sites More sharing options...
Pamela H in Texas Posted April 3, 2015 Author Share Posted April 3, 2015 Squishy went to the specialist today. Turns out that his L1 is about 70% of the size it should be. That causes all the other vertebrae to "fall" where his L1 is missing and pushes L1 out further. It's kinda interesting. Anyway, doctor says that these things can really run the gamut but that it is probably pretty mild of an issue. The next 15 months or so will really tell how things are going to work out. The ideal would be that he'd go in every 4-6 months throughout childhood, possibly needing more correction when he is a teen. That is what happened to another boy Dr chose to use as an example. He ordered some testing but backed out of most of it for now, deciding to only do the test for MPS for now. We'll find out next week. He returns to dr in two months. Quote Link to comment Share on other sites More sharing options...
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