DS update

Re: DS update

feeds@yuku.com (jalmil) — Sun, 28 Jun 2009 16:39:52 GMT

Good luck Eliane!

Re: DS update

feeds@yuku.com (Elainekh) — Fri, 26 Jun 2009 23:58:08 GMT

MRI went well. Still have EEG and neuro appt but no dates yet. I'll let you know.

Re: DS update

feeds@yuku.com (Rayni) — Fri, 26 Jun 2009 11:42:38 GMT

So, what's the verdict on appts? How did MRI go?

Re: DS update

feeds@yuku.com (justlovehim) — Tue, 23 Jun 2009 18:43:30 GMT

Yea, keep us posted.

Re: DS update

feeds@yuku.com (momofalexa) — Tue, 23 Jun 2009 18:20:45 GMT

Oh, let us know how it goes, Elaine. Hoping everything works out well.

Re: DS update

feeds@yuku.com (Elainekh) — Tue, 23 Jun 2009 18:19:17 GMT

MRI scheduled for tomorrow (Wednesday). Will find out tomorrow about EEG and neurology appt.

Re: DS update

feeds@yuku.com (JoAnnSW) — Sun, 21 Jun 2009 18:22:11 GMT

Thinking of you and hoping things work out for the best.

Re: DS update

feeds@yuku.com (justlovehim) — Sun, 21 Jun 2009 04:53:13 GMT

Elaine, thanks for explaining. When I was reading your post, I thought about seizures too. Focal seizures are the staring absence kind of episodes you describe. Poor guy. I guess I always assumed that people of SSI would get medical. It's good that you may be able to keep him on yours too. Hope you hear soon. In WV, sometimes an attorney is required for legitimacy in need. Hope you don't have to go that route.

Re: DS update

feeds@yuku.com (tinymomthree) — Sat, 20 Jun 2009 16:16:39 GMT

Elaine, thanks for sharing, it sounds like you will hopefully be getting answers soon. I hope you will be able to get the SSI for him as the biggest comfort to that is the insurance. The amount of money you get is never that great but having the security of health insurance is so important. Has ds 19 already been diagnosed with a seizure disorder in the past? My friends son that has Autism had his first seizure at age 19. She was very worked up about it of course. I also wonder about the...

Re: DS update

feeds@yuku.com (Rayni) — Fri, 19 Jun 2009 18:37:56 GMT

He also has a history of word loss, where the commonest of words can't be recalled to put in a sentence (ie "Put the book on the ???? you know, the thing where we eat dinner" (table).

Nick & I both do that. It's so frustrating. Nick will go into great detail. We've always called him "the little professor." He just can't seem to make anything short & succinct. A lot of times my eyes just glaze over.

He's...

Re: DS update

feeds@yuku.com (momofalexa) — Fri, 19 Jun 2009 08:38:30 GMT

Elaine, all very interesting...thank you for sharing so openly. It's good information to have other parents' perspectives on these issues. I didn't know the insurance company would accept a letter from the doctor, so that little nugget of information is golden for many of us. Again, I appreciate your openness about everything.

What you described as a "black out" sounds like an epileptic seizure to me. I'm sure you already know that but I just thought I...

Re: DS update

feeds@yuku.com (Elainekh) — Thu, 18 Jun 2009 23:43:53 GMT

I guess we could say somewhat stable compared to what I know many on this board go thru, but not somewhat stable for how things have been for him the last couple years. He's having more episodes of headaches. Also having episodes of what he calls "Black outs" but does not lose consciousness, more like an absent stare and then doesn't remember some of what happens or hear what people say to him. I think these are pretty short episodes but they are increasing in frequency. No,...

Re: DS update

feeds@yuku.com (Anita) — Thu, 18 Jun 2009 10:05:19 GMT

Good to hear from you. Is he somewhat stable at this time?

Re: DS update

feeds@yuku.com (momofalexa) — Thu, 18 Jun 2009 07:16:33 GMT

Elaine, thanks for the update. It sounds like you have some good medical care for him and a tdoc. Does he have some sort of insurance right now? Also wondering about the work situation...he cannot work apparently but you didn't elaborate on that. I'm curious as mine will be 18 soon...just wondering about how that works with the young adults and the SSI application, too.

Re: DS update

feeds@yuku.com (justlovehim) — Thu, 18 Jun 2009 06:54:49 GMT

Good luck. I hope it is expedited through. I hope I'm not offensive, but can he not work at all? Good luck

Re: DS update

feeds@yuku.com (jhmom) — Thu, 18 Jun 2009 06:43:09 GMT

I think it's great that all of younes are going to therapy...and that she knows the background enough to help!
Hoping things work out for younes!

Re: DS update

feeds@yuku.com (Rayni) — Thu, 18 Jun 2009 00:19:10 GMT

Thx for the update Elaine & good luck. It is so hard to wait. But if the old file is sent along, it should expedite things, I would hope.

DS update

feeds@yuku.com (Elainekh) — Wed, 17 Jun 2009 23:00:35 GMT

It's been quite some time since I've updated on this forum about our ds. We are seeing a psychiatrist regularly and he has started seeing the therapist with us again. Sometimes just one of us, sometimes just two of us and sometimes all three of us. Seems to be helpful for all of us. This therapist has know ds since he was about 8, so we don't have to go through everything, just what is current. She is able to bring up things from the past that are relevant to current situations....