LindaMW Posted December 11, 2012 Report Share Posted December 11, 2012 We have been battling this horrible disorder for 14 months now. But my biggest concern at this point is his memory. Example--He was going to start playing basketball for school in November, so we went to get the new high tops, but unfortunately he has been sick and has never gone back to school. Now we are cyber schooling and signed him up at our local rec center. I got the shoes out for his first game and he saw them on the floor and asked who they were for. He said he did not remember us buying them a month ago. This is so scary. Has anyone seen this with their children? Does this mean there is permenant damage? Sometimes you think you have this under some control and then a new issue pops up. Why do these children have to suffer with this? Thanks Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted December 11, 2012 Report Share Posted December 11, 2012 Yes, we had memory issues. There are both specific events and then large stretches of time that my DS has completely lost. Some of it I chalk up to the power of the brain to sort of protect you from the tough times, and some of it, I'm sure, has to do with the whole NMDA receptor/glutamate thing that's also found to be at issue in some cases of encephalitis, Alzheimer's, etc. My son even once remarked that he felt as though he was "like Grandpa" (who does have Alzheimer's) because, while he could easily remember events that dated back 2 or 3 years, he had trouble remembering events of the previous week. Most of his memory lapses seemed to be with short-term and/or processing memory, while his long-term memory remained largely in tact. We found that supplementing with taurine assisted the processing memory, i.e., kept him on better track with multi-step tasks so that we didn't have to constantly remind him what came next. In the end, the memory deficits eased up and disappeared completely as he became healthier. Link to comment Share on other sites More sharing options...
911RN Posted December 12, 2012 Report Share Posted December 12, 2012 Lots of memory issues here to...short term, some long term but more executive memory issues. Link to comment Share on other sites More sharing options...
Kathy4Him Posted December 12, 2012 Report Share Posted December 12, 2012 We had short term memory issues and it was really frightening. I would tell my ds something and 5 minutes later it was as if I never told him. That is getting better. Link to comment Share on other sites More sharing options...
MamaOnAMission Posted December 12, 2012 Report Share Posted December 12, 2012 big time memory issues. short term. all day long she is looking for miss placed items. also, when she snaps and gets super agitated from too many thoughts in her head, she starts to do unusual things but never remembers what she did. hang in there. it's tough but the people on this board are great and will help you. Link to comment Share on other sites More sharing options...
EmilyK Posted December 16, 2012 Report Share Posted December 16, 2012 We see memory issues too. I can't wait for that to get better. For now I'm glad we have the OCD and rages and anxiety in control. Link to comment Share on other sites More sharing options...
SurfMom Posted December 16, 2012 Report Share Posted December 16, 2012 DD15 has this too, most notably academically in reading comprehension. It is like she wasn't even in the room when we read, discussed or reviewed. This seems to affect more of the language portion of her brain than the numerical or spatial. I am finding that she can learn....it goes into her long-term memory....she just cannot seem to access it short term. Nancy, it is encouraging to hear that some of this may be temporary. Link to comment Share on other sites More sharing options...
Kimiejoe Posted December 17, 2012 Report Share Posted December 17, 2012 We too have has memory problems with DS 8. Teacher emailed about DS failing a test and thought DS has a processing problem. Am not sur where to go from here. Pediatrician prescribed ADHD Rx but not convinced this is the best route. Any other suggestions?? Memory loss seems to be short term and comprehension. Thx all! Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted December 17, 2012 Report Share Posted December 17, 2012 We too have has memory problems with DS 8. Teacher emailed about DS failing a test and thought DS has a processing problem. Am not sur where to go from here. Pediatrician prescribed ADHD Rx but not convinced this is the best route. Any other suggestions?? Memory loss seems to be short term and comprehension. Thx all! From our experience, this is a PANDAS/PANs effect and will subside over time, but it can cause problems . . . particularly academic . . . while it is in play. We tried ADD/ADHD med, also (Intuniv), really to no positive effect. Again, taurine has essentially no side effects, but it may help this "processing memory," i.e., their ability to stay connected with "what comes next" in a multi-step tasking situation. For a while, our DS would completely lose track of where he was, what he was doing; it could look very ADD-ish. For instance, he'd be taking a shower and forget whether or not he'd already washed his hair, or washed his face, etc. So he took to re-washing lots of times because he couldn't remember what he had or hadn't washed. Therefore, everything took that much more time. Same thing with getting dressed, brushing teeth, doing a reading assignment for homework, etc. When we introduced taurine, we thought we saw some improvement, and as he's healed and the inflammation has stopped being a chronic issue for him, all of this has improved. You might also try zinc, as it has helped with attention in our case, also. In the meantime, you might try adding mnenomic devices, more frequent memory drills for memorized academic information, and/or take advantage of some accommodations that give your child some extra memory support when it comes to quizzes and/or tests. Link to comment Share on other sites More sharing options...
kos_mom Posted December 17, 2012 Report Share Posted December 17, 2012 There are computer programs that work at improving short term memory and processing speed. An old one for memory is Brain Builders. You might google to see what is available. Link to comment Share on other sites More sharing options...
Kimiejoe Posted December 18, 2012 Report Share Posted December 18, 2012 Thank you so very much!! I have not heard of taurine and will need to look up the proper zinc dosage. We will also try the memory skill games. KO you hit it right on the spot! Problems with multi step tasking! Link to comment Share on other sites More sharing options...
kos_mom Posted December 18, 2012 Report Share Posted December 18, 2012 Did you find Hearbuilders? http://www.hearbuilder.com/ I have heard good things about their products. My DS had auditory processing problems long ago and only Brainbuilders and Earobics were available for home use. I believe Hearbuilders is more advanced in terms of graphics, etc. and the other two have remained rather basic. We ended up doing Fast Forward, which requires a provider. The progress he made with a month or so of that would have taken him two years to achieve in language therapy. I am a huge fan of Fast Forward, but it works only with certain sorts of auditory processing deficits. When we did it, if the child didn't meet certain levels of improvement in the first few days, they would advise stopping and refunded your money. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now