Operation Hope: I don’t remember

I’m growing more and more concerned about Gavin’s condition. His continued neurological regression is really scaring me. The biggest and most obvious problem is his memory or rather lack thereof.

Gavin has absolutely no short term memory. 

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I’m thinking that we need to employ a small note book and have him keep it on his person. We will have to have him write things down and maybe that will help him to remember at least some of the things he needs to remember.

Sometimes he can remember but most of the time he really struggles. He will be back at the Cleveland Clinic in a few weeks and we can explore our options with his neurologist.

Unfortunately, I don’t think there is going to be much we can do.

We just have to try and come up with ways to help him navigate life, despite his memory problems. I really what the future has in store for Gavin.  He deserves so much better. 🙁

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rmagliozzi

could it be a medication side effect? I know he takes some alpha blockers, right? My son takes Propanolol, a beta blocker, and has been sometimes forgetting things since being on it for a bit. Memory loss can be one of the side effects of those types of meds. My son has also gained quite a bit of weight, and after researching I found beta blockers can block some of the thyroid hormones, like keeping T3 from converting to T4, something like that. I would have the doc check out his thyroid as well to ensure the meds are not dragging it down. TSH, T3, reverse T3 and T4. make them run all of them. TSH is not always enough to find thyroid issues.

rmagliozzi

could it be a medication side effect? I know he takes some alpha blockers, right? My son takes Propanolol, a beta blocker, and has been sometimes forgetting things since being on it for a bit. Memory loss can be one of the side effects of those types of meds. My son has also gained quite a bit of weight, and after researching I found beta blockers can block some of the thyroid hormones, like keeping T3 from converting to T4, something like that. I would have the doc check out his thyroid as well to ensure the meds are not dragging it down. TSH, T3, reverse T3 and T4. make them run all of them. TSH is not always enough to find thyroid issues.

lostandtired

Thank you very much 🙂

onyxangel1976

Our thoughts and prayers are with you wirh Gavin. My oldest daughter Meranda is having some of the same issues so we can sympethoze with how you feel. Hang in there. And I agree..these kids deserve so much more than the hand thry are dealt. It amazes me dailey how they persevere even with their difficulties.

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