Gifted Issues Discussion homepage Forums GT Research SPD and giftedness

Today I asked our new pediatrician about OT. I told her that we never got authorization for more than the six sessions (one every other week) with the OT last year and I wondered why. She said our insurance company still won't pay for OT for sensory issues or visual motor integration problems and the insurance company's reasoning is that school should pay for OT because even if the child is not in school he "could" be.

We told her about his sleeping difficulties (which also contribute to mine) and the phobias but she didn't say much about it.

She noticed a difference with his spine that other doctors hadn't noticed and he got his first X-Ray. Now we find out he has scoliosis. My son is worried that he will have to wear a brace all the time and he has always been so sensitive to the clothing he wears. He didn't seem that upset until we got home and the doctor called to confirm that he would have to have treatment for it. Now he is very upset. He says he won't be able to stand wearing a brace and I am also wondering how he will deal with this. I am sure this is going to be a little more difficult to deal with than the clothes that never felt right or the sock problems. He thinks he will get less sleep than he does now. I don't think either one of us can handle that. I thought we would get some of our problems resolved and we only find out that we had another that we didn't even know about.

Oh, Lori, my heart goes out to both of you. Not at all what you expected when making that appointment, I'm sure.

I hope that the pediatrician will be sending him to someplace that specializes in pediatrics. Hopefully there will be physical therapists or orthotists who are knowledgable about and sympathetic to the sensory issues. I would imagine that there are other kids who have dealt with the same issues. I've personally worked with adults who have sensitive skin and/or senosry issues and don't tolerate things like carpal tunnel braces or other hand/wrist braces. I did have one little guy who had surgery done on both legs for tendon lengthening and needed casts on both legs simultaneously. We were sure he wouldn't tolerate the casts due to sensory issues, but he did amazingly well with it. Perhaps it won't be as bad as your son pictures it. But I certainly understand the anxiety about it.

I hope that the process goes smoothly and with as little disruption to the rest of life as possible.

As far as the OT being covered by your insurance, I wonder if you could find an OT who would advocate for your son. There typically does need to be a medical diagnosis but then most OTs will use billing codes that are accepted by insurance versus those that aren't. Unless there is just no way to make the treatment medically necessary....sometimes the needs just come across as too educationally oriented and then don't get covered.

Maybe this new medical diagnosis could work in his favor and help to get OT and PT?

Oh Lori - I'm so sad to hear that you have a new worry. I am praying for you and your family.
Grinity

I'm hoping for the best for you, Lori!

Lori - this may be out of left field, and I haven't read this whole thread, but I am pretty sure that certain kinds of scoliosis are a symptom of a tethered spinal cord (which is diagnosed by MRI). I recall that from my reading last fall. My ds5 (who has SPD, among other issues) was discovered to have a tethered cord and had surgery to release it last October (by a pediatric neurosurgeon). He did not have scoliosis as a symptom, but I'm constantly looking for scoliosis in the other kids because they too have wierd butt crack issues (sacral dimples, etc.). In ds5's case, his tethered cord was caused by a filum lipoma (fatty filum) and the surgery was fairly simple. I'm just glad it's fixed because that can prevent further neurological deterioration as he grows. To the extent that a tethered cord causes neurological issues, they can be permanent (sometimes/often) though some patients see improvement following surgery.

My point is that if, by any strange chance, your child's scoliosis was caused by a tethered cord, it may be surgically fixable - releasing the tether may greatly improve the scoliosis. Just thought I'd throw that out there in case the ped hadn't considered that possible cause. It may be well worth at least asking the question.

sending hugs from the land of strange, random medical issues

p.s. it's a long story, but I was the one who identified the possible issue with ds5 and brought it up to the ped. (I was googling about the baby's sacral dimple and came across some info, and then remembered ds5's symptoms.) His symptoms were potty issues (constipation and voiding problems) and a tiny skin tag in his butt crack that the ped didn't know about. When I mentioned it, she wanted to see him right away, and then immediately ordered the MRI. We were both surprised with the result. Now his ITP seems to be turning into congenital thrombocytopenia - the land of strange medical issues...

Thanks. I found out yesterday that a cousin on his dad's side of the family also had scoliosis and had to wear a brace as a child. Her mom said it was very hard for her daughter to deal with (and she didn't have sensory issues) but the experience led to her consider a career in the medical field. My son also has an older gifted friend who was also recently diagnosed with scoliosis. This boy is already over six feet tall and surgery might be his only option because he is almost finished growing. At least there is a chance my son might be able to avoid surgery by wearing a brace. I hope so because he has an extreme fear of surgery just like I do after seeing what happened to my mother after she had "routine" surgery.

I think it was hearing that treatment could involve surgery that really got to him. This is a kid who rarely cries. He jokes his way through everything. This the kid who could find something positive in almost everything--even my mother's quality of life that I thought was just not there because with no short term memory she couldn't read or carry on a conversation or take care of even her most basic needs. But he was able to point out that she has her husband who takes good care of her and gives her the one thing she enjoys in life now--ice cream. He makes sure that she has all kinds of different flavors of ice cream. Her eyes light up with happiness when he tells her it is time for ice cream. My son told me that my problem is that I never found my "ice cream" and I spend too much time worrying and it really bothers him to see me worrying. He said his grandmother doesn't worry any more--she is past that now. I wish I had somehow been able to record exactly what he said because it brought tears to my dad's eyes and mine. He has a way with words, a definite gift, that I just don't have. When I recently had anxiety to the point that my blood pressure went out of control he sat with me and made jokes to distract me and talked me through it.

After my doctor's appointment, he heard me tell my husband about the woman who took my blood pressure who told me that it was the "highest she had ever seen" which was not something to tell someone in the middle of a panic attack and we talked about how important the things we say to people are, especially in times of stress. I have always told him that he has a real gift for knowing the right words to say to make people feel better.

He cried for the first time in a very long time yesterday and asked why this was happening to him and I so wished that I had his gift of knowing the right words to say. I so wanted to make him feel better. I went into another room and called my husband and he was able to come home from work early and he talked to him and reassured him that he will get through it and it will be okay. His sister called him about ten times last night to tell him important things like girls will still like him because of his personality and that if her boyfriend had this it wouldn't make any difference at all to her.

He is feeling better this morning, thank goodness.

I hope insurance will cover most of this. My sister-in-law told me that they went into debt because some things were not covered and she thought they spent about $25,000. My husband is older than I am and will retire in less than 4 years so the financial part of this has me a little worried too, but I forgot, I am not supposed to worry. I have to go find my ice cream.

I can understand your apprehension about the brace and sensory issues. DD6 fusses that wearing a watch bothers her and has the sock issue too. It sounds like his knowing what to say to others will help him find the right things to tell himself as he deals with this challenge.

Bibliotherapy may also be a good approach. Deenie by Judy Blume comes to mind as well as the story of Frida Kahlo. He may find more of a male perspective from other boys going through this on a message board: http://www.spinekids.com/

Sorry to hear you're faced with this on top of everything else.