Guest guest Posted August 30, 2011 Report Share Posted August 30, 2011 Kara,I don't know if this will help or not, but if it does, it would be wonderful for you and your son. My daughter MaKenna had issues laying on her back for some time, she is almost 4 years old. She has been diagnosed with Down syndrome and has chronic middle ear fluid. We have her hearing checked at least four times a year. We had her third set of ear tubes placed this summer and since then she doesn't mind laying on her back. I talked to her acupuncturist about this and he seemed to think that the fluid in her ears may have caused her to be uncomfortable while laying on her back. God Bless you and your son, NeumannOn Tue, Aug 30, 2011 at 8:46 PM, D & K Dedert <dedertfamily@...> wrote: I would like to see if anybody in this group has some advice for me regarding the Moro Reflex. My son, Calvin, is nearly two and has severe neurological impairments. We attended a camp (which was wonderful!) last August in San Mateo. The past year has been touch and go with Calvin and so many times we nearly lost him. This has hampered our efforts to do therapy for him. This summer he's been doing well and we've renewed our efforts. Calvin's reflexes are extremely over active and not integrated. One of the biggest challenges we have in everyday life is Calvin's startle or moro reflex. Some time ago it started with me noticing every time I placed him on his back to change his diaper he'd startle, put his arms out, legs up, and begin crying. It would stop when I lifted him out of that position. Now it is getting stronger and more out of control. It's gotten to the point that we can scarcely go anywhere in the car with him or place him in any seated position. When we put him in the stroller or car seat he often begins breathing more rapids, his arms fly out, his legs come up a bit and it just builds from there. He begins to shriek in absolute fright, as soon as I get to him his little arms and legs feel as stiff as iron and his screaming out of control. We desperately have to quiet and calm him as quickly as possible because he has trachiabronchomalasia (his airways collapse under stress or with strong crying). It is so distressing for him and for us. It's odd that it doesn't necessarily begin when I put him in a seating device. He can be sitting there for five minutes and then all of a sudden it will start, or just as I'm putting him into a seat. The only way it does not activate is if he is in a side-lying position. Sometime I've even had to drive to therapy with him lying sideways on my lap! I know it's not safe, but the other option is his airway collapsing. We've been doing rehab therapy at Free Bed Rehab and they've suggested a sort of neck brace to keep his head in an aligned position. This helps somewhat but the problem remains. Has anybody ever heard or this or experienced this? We have so many bizarre thing to handle we often feel like the only people in the world with this situation! I would be grateful for any advice, tips, or shared experience. I also have looked back in my camp notes and for some reason I all the instructions for the reflexes but am missing that particular one. If anybody has it can you send me an email with a refresher on it? I looked on our evaluation DVD and can't find it there either.A bit desperate here in Michigan,Kara Dedert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 Hi Kara. I work in early intervention. I have been told be Dr Masgutova that there can be internal triggers for Moro such as reflux. Side lying position is usually the best for children with reflux. Is this one of the issues you have had? Sometimes it does not come all of the way up or if they have done surgery to stop reflux you can have pain. It sounds like you should explore this. Did you see there is a class Michigan in November with Pam? HansenOn Aug 30, 2011, at 9:46 PM, D & K Dedert <dedertfamily@...> wrote: I would like to see if anybody in this group has some advice for me regarding the Moro Reflex.My son, Calvin, is nearly two and has severe neurological impairments. We attended a camp (which was wonderful!) last August in San Mateo. The past year has been touch and go with Calvin and so many times we nearly lost him. This has hampered our efforts to do therapy for him. This summer he's been doing well and we've renewed our efforts.Calvin's reflexes are extremely over active and not integrated. One of the biggest challenges we have in everyday life is Calvin's startle or moro reflex. Some time ago it started with me noticing every time I placed him on his back to change his diaper he'd startle, put his arms out, legs up, and begin crying. It would stop when I lifted him out of that position. Now it is getting stronger and more out of control. It's gotten to the point that we can scarcely go anywhere in the car with him or place him in any seated position. When we put him in the stroller or car seat he often begins breathing more rapids, his arms fly out, his legs come up a bit and it just builds from there. He begins to shriek in absolute fright, as soon as I get to him his little arms and legs feel as stiff as iron and his screaming out of control. We desperately have to quiet and calm him as quickly as possible because he has trachiabronchomalasia (his airways collapse under stress or with strong crying).It is so distressing for him and for us. It's odd that it doesn't necessarily begin when I put him in a seating device. He can be sitting there for five minutes and then all of a sudden it will start, or just as I'm putting him into a seat. The only way it does not activate is if he is in a side-lying position. Sometime I've even had to drive to therapy with him lying sideways on my lap! I know it's not safe, but the other option is his airway collapsing.We've been doing rehab therapy at Free Bed Rehab and they've suggested a sort of neck brace to keep his head in an aligned position. This helps somewhat but the problem remains. Has anybody ever heard or this or experienced this? We have so many bizarre thing to handle we often feel like the only people in the world with this situation! I would be grateful for any advice, tips, or shared experience.I also have looked back in my camp notes and for some reason I all the instructions for the reflexes but am missing that particular one. If anybody has it can you send me an email with a refresher on it? I looked on our evaluation DVD and can't find it there either.A bit desperate here in Michigan,Kara Dedert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2011 Report Share Posted September 4, 2011 Hi Kara,Besides the possibility of being affected by reflux, your son may also be feeling gravitational insecurity or depending on your environment may be overstimulated. Also, how are you changing his diaper? Lifting up by two legs? Svetlana teaches that once you lie your child down on his back, to lift one leg at a time while sliding the diaper under his bottom (or out as the case may be). Lifting two legs can be very disorienting for the child. It's common to diaper change by lifting two legs and I wish I had known this when my son was in diapers. My son had very bad reflux from the time he was born until about a year old. We couldn't put him down, seat him, or lying even to change a diaper without him vomiting. I carried him around everywhere and he slept on my chest while I was sitting up in an inclined position. He also had gravitational insecurity which meant being placed down in a car seat, swing, push toy, etc. made him really upset. It made for very nerve wracking car rides even to nearby destinations to shop for groceries or doctor's visits and car rides are often advised to help with calming! I learned at the recent Facial Reflex Integration Level 2 course held here that work with the sucking and swallowing reflex can help with reflux. I wish I had known of these techniques when my son was a baby. I remember also there were certain restaurants that even as an infant our son made us aware were not acceptable. Mainly, restaurants like Chili's and Appleby's. He would start to cry inconsolably as soon as we entered or shortly after being seated, but then after we walked outside the restaurant with him he'd stop and start again as soon as we re-entered. Initially, we'd try feeding then changing him in the car and other things, until we finally caught on and left without eating our meal Quote Link to comment Share on other sites More sharing options...
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