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+--- Thread: Hello...any suggestions? (/thread-938.html)
Hello...any suggestions? - thismom - 05-18-2013
Hello, I came to this site because I don't know how to help my son. He was diagnosed with SPD back in November and I don't know how to help him. I have known something was going on with him since he was about 18 months old for various reasons: sensitive to touch, noise, visual stimulation, motor delays, and he also exhibits oral defensiveness. He's the happiest child, very affectionate, and extremely (maybe overly) friendly to others. He is only 4 and has a memory like none I've ever seen. He has complex medical issues, has since shortly after birth, but it mostly effects his growth. His cognitive ability and communication are actually probably advanced. He does receive home based therapy for his motor skills, but I am having difficulty with sensory seeking/obsessive behaviors. Ever since I can remember he has been one to grind his teeth, but has also started some newer behaviors like picking the skin off of his fingers (he's had them bleeding more than once) and twirling his tongue in his mouth. Our latest challenge involves his medical needs...he receives IV fluids daily and will not leave the dressings alone. He says that they itch but I can't help but think that it's also a sensory behavior. Possibly irritated by the tape or the IV line under his skin, I'm not sure which. The doctors are not much help outside of trying different adhesives and vest-type devices that don't help. Can anxiety contribute to these obsessive behaviors? And would treating that possibly help?
Thanks very much for any input. I just want to help him, I know this drives me crazy and can't imagine how it makes him feel.
RE: Hello...any suggestions? - LAC1961 - 05-22-2013
I recently discovered a book recommended by a friend called Disconnected Kids: The Groundbreaking Brain Balance Program for Children with Autism, ADHD, Dyslexia, and Other Neurological Disorders. I find the recommendations promising and they make me feel hopeful again. Another thing I've been reading up on is Primitive Reflexes. If you Google it, you can find a lot of info, and the theory is compelling. Bear in mind these treatments aren't proven, but I've tried most of the proven treatments with very little change in the SPD symptoms. Occupational therapy has helped a little--mostly with coordination and gross motor skills, Therapeutic Listening has helped a little--with calming and less frustration, and the Feingold Diet dramatically changed my daughter's behavior--went from many meltdowns a day and being belligerent most of the time to very cheerful and very rare meltdowns. Her basic SPD symptoms haven't improved a lot--still puts inedible objects in her mouth, can't resist touching everything, very impulsive, easily distracted, requires constant supervision, trouble following directions, doesn't notice smells, doesn't notice if her face is dirty or clothes are disheveled, can't identify items by touch, not 100% potty trained (will be 6 in a month) and other internal regulation issues, very loud talker, difficulty writing/drawing, other kids are turned off by her lack of social appropriateness. Consequently, I'm willing to try some alternative therapies at this point. We're meeting tomorrow night with the Brain Balance Centers doctor to determine if we want to sign up for the program promoted in the Disconnected Kid book. Based on your description of your son, if it were me, I'd concentrate on doing exercises to get rid of the primitive reflexes. Here's one link you may find helpful: http://www.rhythmicmovement.com/index.php?option=com_content&view=article&id=12&Itemid=33&lang=en
I hope this helps. We're all in this together, so keep sharing your ideas and asking questions.
RE: Hello...any suggestions? - thismom - 05-23-2013
Thank you for your response! The link you provided was especially helpful and makes a lot of sense. I will see if I can download those books from amazon. I suspect that his primitive reflex development is off for several reasons. My son was premature and spent a lot of time in the hospital for the first 2 years, which I am sure has impacted all areas of development. In addition, I believe that some of it is diet related. He is missing most of his small bowel, so difficulty with digestion as well as deficiencies are major nutritional concerns of mine. He receives much of his nutrition IV, hence the daily infusions, and requires a special formula which further complicates dietary changes as a treatment option. One of the long term effects of his condition is neurodevelopmental delay due to malnourishment. Unfortunately his medical doctors deny that nutrition plays any role, or that he has sensory issues at all, and the sensory experts don't know how to treat him given his medical condition. We do have an appointment next week to be evaluated for OT, so hopefully the info you provided will help them. If not I will push on on my own. We are also pursuing evaluation with Boston Children's for his medical needs, so I am hoping they might be able to offer some input as well. His challenges include fine/gross motor delay, motor and speech planning difficulty, potty training issues, hypersensitivity to touch, sound, visual input, smell and body temperature regulation as well as obsessive & repetitive behaviors...just to name a few. We also have attention issues, problems following directions and sleep problems. I will have lots of questions, I'm sure, but thanks for a great starting point.
RE: Hello...any suggestions? - LAC1961 - 05-23-2013
I'm glad the info was helpful. Your little guy has had a lot of obstacles to overcome, and I applaud your efforts to seek help while he's still young. It isn't unusual for the medical community to poo poo things they didn't learn in medical school. My daughter had seen seven different doctors, none of whom spoke of SPD or diet affecting behavior. Everything I've learned was due to my own initiative and research.
We met with the doctor (chiropractor) tonight. Of the eight reflexes Brain Balance tested my daughter for, four were in the red zone, which means that on a scale of 1 to 5, she has a 4 for showing signs the reflex still exists and is limiting her function. Two were a 3 and two were a 2. The doctor also commented on how her listening and memory skills are more like a 7-9 year old, which is likely attributable to the years of speech therapy and the Therapeutic Listening we've been doing for a few months. It's the putting what she hears into action that's a huge obstacle. We're starting out with exercises to help with the primitive reflexes, the first two being Angels (like snow angels, but on the carpet) and Starfish (a little more complex, but you can google Starfish exercise for primitive reflexes--there are some videos of it on UTube. We have to do 10 repetitions twice a day, but three would be better. They said to expect some symptoms to become worse before they improve because you are challenging a reflex that has existed since utero.