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Old 04-17-2011, 06:39 AM #1
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Hi, I have a severly affected autistic 10 year old grandson whom lives with me. My husband is 60 and is getting slower at memory. I am 51 and have myasthenia gravis. A muscle condition which causes your immune system to attack your muscles and make them weak. rest brings you back a little. My grandson refuses to take his medicines. Every day is a struggle he spits them out, even the melt a ways. So we hide it in his food. Sometimes he won't eat it we stay up most of the night. He blows constantly like a stim, From sun up to sun down. He is loving at times but will just bite the tar out of you and scratch like a cat. We love him dearly, but with our illnesses and getting weaker. We don't know how long we can do this. The thought of him being in a home breaks my heart, but the thought of living with this breaks my body. He does not talk and is still in diapers. I have tried almost every therapy. They have him in a class that teaches him everyday living skills instead of ABCS AND 123S. He couldn't learn. He takes Risperdal. He recently started having seizures as soon as he wakes up, drop attacks. I have just given up giving him morning meds because he refuses to eat or drink anything before lunchtime usually. So far the night one is keeping him ok. I would love to hear from other caretakers. thanks
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Old 04-19-2011, 11:01 AM #2
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Hi,

I have a 13 yo with ASD, and I also have MG. I feel your pain. I am 48.

Is there any chance your grandson could be taught to swallow pills? I am meaning a "formal" session where he learns to do it? If he already has that skill, but is just being a "pain" (and I mean that respectfully, as mine can be one, too), is there anything that really motivates him--video game, toy, computer---that can be withheld until he takes the meds?

I found trying to hide anything in food to be a losing battle, so my daughter learned at 3 how to swallow capsules. Her sense of taste is far too sensitive. We still have our moments with her, but for the most part, it is a routine. We just put the pills in a small dish at mealtimes and she takes them.

I think if you can get into a routine, it might help. I wish you much luck, with your GS and with the MG.





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Originally Posted by BARBARA356 View Post
Hi, I have a severly affected autistic 10 year old grandson whom lives with me. My husband is 60 and is getting slower at memory. I am 51 and have myasthenia gravis. A muscle condition which causes your immune system to attack your muscles and make them weak. rest brings you back a little. My grandson refuses to take his medicines. Every day is a struggle he spits them out, even the melt a ways. So we hide it in his food. Sometimes he won't eat it we stay up most of the night. He blows constantly like a stim, From sun up to sun down. He is loving at times but will just bite the tar out of you and scratch like a cat. We love him dearly, but with our illnesses and getting weaker. We don't know how long we can do this. The thought of him being in a home breaks my heart, but the thought of living with this breaks my body. He does not talk and is still in diapers. I have tried almost every therapy. They have him in a class that teaches him everyday living skills instead of ABCS AND 123S. He couldn't learn. He takes Risperdal. He recently started having seizures as soon as he wakes up, drop attacks. I have just given up giving him morning meds because he refuses to eat or drink anything before lunchtime usually. So far the night one is keeping him ok. I would love to hear from other caretakers. thanks
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Old 04-19-2011, 02:46 PM #3
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Originally Posted by 4-eyes View Post
Hi,

I have a 13 yo with ASD, and I also have MG. I feel your pain. I am 48.

Is there any chance your grandson could be taught to swallow pills? I am meaning a "formal" session where he learns to do it? If he already has that skill, but is just being a "pain" (and I mean that respectfully, as mine can be one, too), is there anything that really motivates him--video game, toy, computer---that can be withheld until he takes the meds?

I found trying to hide anything in food to be a losing battle, so my daughter learned at 3 how to swallow capsules. Her sense of taste is far too sensitive. We still have our moments with her, but for the most part, it is a routine. We just put the pills in a small dish at mealtimes and she takes them.

I think if you can get into a routine, it might help. I wish you much luck, with your GS and with the MG.
wow a fellow MGer! Where are u from? I have tried to teach him and put them in his mouth, but he spits everything out. I may be getting a behavioral interventionist coming to my home , maybe she can help.
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Old 04-19-2011, 06:36 PM #4
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wow a fellow MGer! Where are u from? I have tried to teach him and put them in his mouth, but he spits everything out. I may be getting a behavioral interventionist coming to my home , maybe she can help.
I am in TX. I think the behaviorist is a fine idea! Sounds like you could benefit from a general evaluation of things "while she's there," especially given your challenges and those of your husband.

Autism and MG are both TOUGH diseases. You need all the help you can get. And while you're at it, pat yourself on the back for taking in your grandson. I'm sure he's benefitted greatly from your care, even though he may not always reciprocate the love!

Good luck!
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