Memory Issues

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Memory Issues

Postby tnajk » Sun Dec 27, 2009 8:23 pm

From speaking with a few other Chiari/Sm parents it seems that many of our kids suffer from some kind of memory problems.

My 11yr old son has Chiari and Pseudotumor Cerebri with an LP shunt. It seems his "memory" is getting worse. He can't remember where he put his coat 5 minutes after putting it away, or if I ask him to go get something, he will forget what I asked him to get while walking there. My husband and I joke if his left leg wasn't attached he'd probably lose it somewhere. School is very difficult for him. We pulled him out of public school and he is attending a virtual academy from home this year. We are seeing first hand just how difficult the memory issues make doing day to day work.

Perhaps our expectations were too high? We had hoped the Chiari Decompression surgery would help. When it didn't we were crushed. Then we found out he had high intracranial pressure so we hoped that was the cause. Of course, the shunt was eventually put in and has allowed him to have normal pressure (we assume, it hasn't been checked in a few months) but the memory issues only continue to worsen. We have an appointment for a Neuropsychological exam in late January but I just wondered if anyone else see's such difficulties in their children? Was there was anything that helped that I might try?
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Re: Memory Issues

Postby Sara » Mon Dec 28, 2009 8:58 am

My daughter has PTC as well and a shunt. Memory is serious issue when shunt is malfunctioning and the pressure is high. Is he on any medications? Some of the meds can really screw up memory, topamax and neurontin were big problems for my kids. Our daughter also has ADD and takes meds for that which help the memory tremendously.
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Re: Memory Issues

Postby tnajk » Mon Dec 28, 2009 6:38 pm

He does actually. Currently he is taking Amytriptyline. (For Chronic Headaches we can't get rid of.) The meds don't seem to be helping the headaches much. He definitely had the memory issues before starting the new meds though.
Mom with 12 yr old son dx ACM1 & Pseudotumor Cerebri
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Re: Memory Issues

Postby 3kidssane » Tue Dec 29, 2009 8:33 pm

DD also has memory issues. i've always contributed it to her ADHD i never thought about this being a possible link.
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
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Re: Memory Issues

Postby amr » Wed Dec 30, 2009 5:23 pm

My daughter had decompression surgery in Jan of 2008. She has Hydrocephalus and is shunted as well but takes no meds at all as she has no pain (she also has a large syrinx)

Both Chiari and Hydrocephalus can cause memory issues which she has had for the last few years and have actually got worse since surgery - or is it just that we are more aware of it (I really do not know)

One thing we have resolved is that instead of worrying about it (as this makes her memory worse as does other stress) we have made adjustments and she writes herself memos

Mum to Natalie diagnosed Jan 2008 (aged 14), ACM, Syringomyelia, Hydrocephalus. Decompression Jan 2008, VP shunt Feb 2008. Perfectly normal teenager and don't we know it!
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