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Joined: May 2007
Posts: 982
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Joined: May 2007
Posts: 982 |
My son has been taking Omega 3-6-9 for months now and I don't see any difference in his hypotonia, but his timing and coordination got better. For the last year or so he has been learning dances in musical theater as fast as the other kids even though he had to sit and watch the dances part of the time. He started physical therapy a few weeks ago. The physical therapists my son saw over a year ago before he started wearing a scoliosis brace gave him the same exercises they gave almost everyone else and didn't watch him to make sure he was doing the exercises correctly. I couldn't see that it did my son any good after six weeks and we stopped going and he did some exercises at home using our weight machine. He also had a chin-up bar in his room and could do a few of those before he was put in the brace. He can't do those things now. When he got his scoliosis brace we told the doctor that he was not in PT. He showed my son a few exercises to do at home but even with those exercises, wearing a brace all day caused my son's core muscles to become much weaker. His orthotist found us a physical therapist that seems to know a lot more about my son's condition and I am very pleased with the therapy but our co-pays are about $100 a month. The physical therapist is not telling us that the therapy will work miracles and that he won't be in pain. He says pain goes along with my son's condition, but he gave my son some stretching exercises that help a little. He also told us that everyone can gain strength but the amount of strength my son will gain might not be the same as someone who does not have hypotonia. I recently asked my son's writing composition teacher for accommodations for the test after she said there would be 13 questions requiring a minimum of three written sentences each and I knew there was no way my son could do that amount of writing in one hour. I also sent her a link that I think helped me explain what living with hypotonia is like. http://uncalledforproductions.wordpress.com/2009/05/20/hypotonia-the-questions-ive-been-asked. The writing comp teacher said she would allow my son to type his answers on his iPhone in class and email it to her at the end of class which is what my son suggested we do.
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Joined: Apr 2009
Posts: 687
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3-6-9 is not the product that people are typically using for brain and neuro concerns like adhd, anxiety, or hypotonia. Our American diet tends to include an excess of omega 6 and a lack of omega 3. It is that imbalance that contributes to inflammation, poor hormone regulation etc. Most people are going to do much better on a straight omega 3 supplement. For what it is worth, when we accidentally bought 3-6-9 we saw a major decline within a couple of weeks versus what we see on straight omega 3. The major improvements we see are more with balance, emotional regulation, and endurance.
I encourage anyone coping with these challenges to get occupational and physical therapy. It does take time, it does take hard work, but ultimately it can make a big difference. For floppy people it isn't going to make the floppy going away, but improving strength, particularly core strength, can make a huge difference in daily life. Also, I understand it can be annoying when people suggest activities like karate, swimming, dance, or horseback riding. It may feel like people are saying your kid must not have a real problem if stuff like that can help. But, really anything with patterned movements and opportunities to work on balance is worth trying.
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Joined: Apr 2009
Posts: 687
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Joined: Apr 2009
Posts: 687 |
He also told us that everyone can gain strength but the amount of strength my son will gain might not be the same as someone who does not have hypotonia. The good news though is that the strength he gains will mean so much more to him than they will mean for a person who doesn't have hypotonia. Even modest gains can be revolutionary in lessening fatigue.
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Joined: Dec 2010
Posts: 1,040
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Joined: Dec 2010
Posts: 1,040 |
Passthepotatoes,
I second the information on the Omega 3 vs. 3-6-9, and the comments about appropriate patterned movements.
Swimming, dance, horseback riding, and martial arts have all been a huge part of my son's formal "in office" (for definitions of "office which include pools and pastures occupied by physical therapists) and home-based OT and PT - his physical therapist primarily used pool and riding-related activities with him. My son used to joke that PT stood for "Pool Therapy" in the summer and "Pasture Therapy" in the winter. My comments about gymnastics and wrestling were more based on the nature of those two particular sports than on any sense that integrating sport or leisure activities that build strength and balance into a rehabilitation program is impossible or undesirable. I think it is probably an essential part of maintaining the gains made in formal therapy and continuing to build on them.
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Joined: May 2007
Posts: 982
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Joined: May 2007
Posts: 982 |
My son took omega 3 for at least a year before he started taking the omega 3-6-9 for the last couple of months. I couldn't tell any difference when he switched. His balance and coordination continued to get better and he doesn't have a problem dancing and as a result, his confidence has grown. The physical therapist tested his balance and said it is very good until his muscles fatigue. My son also sings better than he did a year ago. Several people have mentioned that he has a very nice voice. One person said they noticed he had more control in his voice now. I think that might have something to do with being able to take deep breaths and breath normally now that he isn't in the day brace.
This is totally OT, but I have noticed that his voice is deepening slowly and I haven't heard the cracking that I heard with some of the other male singers in the group when they went through puberty. He just sounds really good now so that is something that is getting better for him.
I do think the synchronized patterned movements and dancing in musical theater helped my son with coordination and balance. He does not look like he has a disability at all except for the pain I can see in his eyes.
Whenever he performs at one of these outdoor festivals, he is worn out after the performance and he never gets to enjoy the festival or fair or whatever it is because of the fatigue and now the worsening pain. When he was little, I could take a stroller. Now that he is almost a teenager, it is more of a problem and we are trying to figure out how to deal it.
He performed today at a park with the rest of his musical theater group. The parking lot was quite a distance from the stage. By the time he walked to the stage and had to perform his feet hurt like they always do even though he has orthotics in his shoes, but his back is what hurts the most. Yes he can get a little stronger, but I think pain causes some of the fatigue and pain makes it harder for him to increase his endurance. He will probably have pain tonight and he can't lie down on a heating pad because he will be in the brace. Nights are very hard now but he is willing to go through the pain at night so he can be free from the brace during the day.
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Joined: May 2007
Posts: 982
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Joined: May 2007
Posts: 982 |
I asked my son's physical therapist about having him do exercises in our hot tub but he said to just do the exercises that he gave him already because he thinks they will work better. I would think any kind of water exercise would be a good thing because there is less stress on the joints and less pain.
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Joined: May 2011
Posts: 30
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Junior Member
Joined: May 2011
Posts: 30 |
OK, here's another question - my kids' godmother has had several TBIs in the last few years and is getting significantly better with neurofeedback - anybody tried that??
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Joined: Dec 2005
Posts: 7,207
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Joined: Dec 2005
Posts: 7,207 |
He performed today at a park with the rest of his musical theater group. The parking lot was quite a distance from the stage. By the time he walked to the stage and had to perform his feet hurt like they always do even though he has orthotics in his shoes, but his back is what hurts the most. Yes he can get a little stronger, but I think pain causes some of the fatigue and pain makes it harder for him to increase his endurance. He will probably have pain tonight and he can't lie down on a heating pad because he will be in the brace. Nights are very hard now but he is willing to go through the pain at night so he can be free from the brace during the day. Happy Mother's Day Lori H. I'm happy for your son that he is able to be free of the brace during the day and that he is learning dances as fast as the other kids - what an amazing feat! Sad to hear about this tough challenges he is facing, and my heart goes out to you as I imagine you must be suffering right along with in AND trying not to show it to be strong for him. Wow! I get it that he can't sleep on a heating pad, but can he use one for 15 munites after a long day? What about massage? I've used balls for self message that look like these http://www.gaiam.com/product/yoga+ball+body+therapy+system.dofor back pain at various points and found them helpful. It is sad that he doesn't get to enjoy the fairs and festivals, but I'm so happy for him that he's found an activity that the enjoys and feels so at one with. So many kids don't find any activity satisfying except video games that I'm always impressed when a young person find something in the real world to immerse himself in. Love and More Love, Grinity
Coaching available, at SchoolSuccessSolutions.com
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Joined: May 2007
Posts: 982
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Joined: May 2007
Posts: 982 |
Thanks. I am going to ask the physical therapist what he thinks about the yoga balls. It looks like it could be helpful since one of my son's problems is tight muscles--more on one side than the other and it is the muscle imbalance that makes me worry that if I have him do any exercise wrong or if he doesn't do it enough that it will make things worse.
Last night one of the straps came off of the brace and I had to wake up my husband so he could fix it. I really have to learn not to panic when this kind of thing happens because I know it makes it harder for my son. I don't know what I would do without my husband. It was hard to sleep after the brace problem because I was worried that the strap wouldn't hold, but it did.
Today my son has another performance but it is inside so it will be easier.
Yesterday, my son used an accommodation for his dysgraphia for the end of semester test in his writing composition class--his iPhone. There were 13 short answer essay questions requiring at least three sentences each and there was no way my son could write that much in one hour.
But he can type so fast using two fingers (one thumb and one index finger) that he finished the test before anyone else. He emailed the answers he had typed to the teacher. It was so easy. I don't think any of the other students saw him with the iPhone so he didn't feel uncomfortable using this accommodation.
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Joined: Dec 2010
Posts: 1,040
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We're keeping our fingers crossed that it will be "good enough". It was! Despite the fact that he was sick on the day of the test, he managed to pull off exactly the math score he needed to get into the program he wants to attend.
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