Our Experience with Torticollis-Part 2

Soon after the second scan we began seeing an occupational therapist. She was trained in craniosacral therapy, which involves lightly manipulating the bones and tissue in the skull, spine, and pelvis. From what I can tell this is usually done by a chiropractor. There isn’t really any evidence that I could find supporting this treatment, but other parents seemed to think it helped. I didn’t think it would hurt. She also worked with him on improving torso strength. He was extremely weak throughout his trunk. She determined he was slightly behind in some motor skills, but nothing major. He really started disliking PT and OT around this time and would frequently cry through the whole session. He was about 9 months old. I think it was a combination of being touched so much, being close to nap time, and teething. They started taking him back without us because he calmed down after a few minutes if we weren’t there to distract him. The OT gave us a compression vest to borrow after a couple of months.It’s normally used for children with autism and sensory processing disorders. Nick does not have any sensory issues, but she felt it would help him stay aligned and get a feeling of what it was like to sit up straight. The torticollis coupled with a weak torso cause him to slouch to the left when he was sitting. We tried it for a few weeks. He looked much better while wearing it, but went right back to the tilt and slouch when it was off.  He didn’t mind wearing it though, and actually seemed to enjoy it.

Buddy at  9 months and after 5 months of PT

Buddy at 9 months and after 5 months of PT

We switched to a new PT soon after starting OT. The first PT was going to be at the hospital exclusively. I also thought it might be good to get a fresh perspective after more than six months of PT with little progress. The new PT was a great change. While I liked the first, the new one seemed a bit more aggressive and hands on. We discussed a torticollis collar for Buddy but we all felt it wouldn’t work for him. The PT hadn’t personally seen much of a benefit from it and we didn’t think the collar would suit his personality After a couple of months with the new PT he suggested a neck x-ray just to make sure there wasn’t anything wrong with the bone structure. We still weren’t seeing much progress at this point and just wanted to make sure. He also wanted us to start considering surgery if the x-ray came back clear. He was a year old at this point. I had already been thinking about it knowing that he wasn’t making much progress. It was still scary to think about though and know that it was a real possibility now.

Our pediatrician ordered the neck x-ray for us and it took a couple days to get the results. The x-ray came back and showed that there was subluxation of the C2 and C3. I was dumb and googled. This was a very bad idea and turned up some very scary results. This information really scared me and resulted in a panic attack that night. After I accepted that there could be a real problem I was able to go into “fix it mode”.  We were referred to a pediatric neurosurgeon. It took a month to see him. Unfortunately, there is only one pediatric neurosurgeon in our area which resulted in an hour and a half wait in the lobby. He was very pleasant and told us that he doubted it was anything serious and was just a result of Buddy’s head being tilted for so long. He said we could do a CT scan to double check and left it up to us. We asked him about surgery. He had very negative feelings about it and thought it was just a bunch of plastic surgeons out to get money. We would probably need a CT scan though if it was something we wanted to do. We left figuring surgery was off the table. We set up a CT scan for peace of mind. If he truly had a problem with these vertebrae it could be very serious.

In the couple of months that it took to see the doctor and have a CT, Buddy began walking. He was 14 months. This significantly improved the tilt. It was still obvious when he was sitting but not too bad when standing and walking. The PT still wanted us to think about surgery since it was still pretty persistent. We debated back and forth. He was doing so much better, but not “normal” yet. What harm could a consult do? We figured we would go to have a consult. It was a two hour drive, but we wanted to do it for peace of mind. The appointment was only a few minutes. The doctor felt his neck and thought he was a good candidate (of course, easy money). He would cut the tight muscles and release them. He explained that the muscles were like rope and can only be pulled so far. The procedure would only take about 30 minutes and he would wear a soft neck brace for two weeks. Easy. He would need to continue PT for a while, but should have a lot of improvement. Buddy had some pictures take as he had developed some facial asymmetry at this point. It was a relatively easy appointment.

The day of the scan was pretty eventful. He was not allowed to eat or drink all day. We tried the scan first without sedation but it was a no go. He then had to have an IV put in for the sedation which was quite unpleasant for everyone and upsetting for me. I can’t remember what they gave him but he was out immediately. We were allowed to be with him for the CT. It only took a few minutes and he woke up 10 minutes later. Once he drank something we were allowed to go. They told us he would probably be woozy and wouldn’t want to eat. We headed to the hospital food court where he proceeded to eat a lot. He also wanted to run around. Nothing slows that boy down. We left for the appointment at the neurosurgeon’s office where we got the good news that everything was ok. The subluxation was due to the prolonged tilting and would resolve once he could hold his head straight.Now we just had to decide if we wanted to go forward with surgery. We continued PT for a couple months and didn’t see much progress after the initial improvement once he began walking. The PT let us know he thought he had gone about as far as he could go with PT and OT alone, and we should decide whether or not to do surgery. We really needed to make a decision.


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