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Elainekh |
DS update |
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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. Psychiatrist gave us order for EEG. So will get another done, but no longer at the Children's Hospital. Children's gave us two
doctor names that do EEG's in their offices. One was one of our previous neurologists and ds does not want to go back to him. So we will make the appt with
the other one (who is closer to home anyways). Took him to primary care doc today for a physical. He referred to this neurologist where we are going for EEG
due to ds's complaints of headaches again and multiple other things including what ds calls black outs, which sound by description like some sort of
absence seizure which the first ped neurologist was basing her treatment on (well, actually temporal lobe epilepsy). So, he also order an MRI of head!! I
didn't even have to ask! I spoke with ds son about how when he first took tegretol it had helped his headaches and some of the stomach issues he had in the
past. So maybe that would be an option, but not the topomax as that was the one he had cognitive dulling with (he says "made me dumb"). Also, did
online application for SSI, went to the social security office and completed what we needed to there. Now we wait, and wait, for a reply. This was just the
intake which gets sent to the evaluators, then we'll hear if they need more info. I need to look for our old stuff and see what we can give them to hurry
up the process. She did say she would send his old file to the evaluator as well. He got SSI for about a year several years ago when I was in school, but then
was disqualified when I started my job (we made too much money for him to get ssi). So we paid all that overpayment back and now as an adult with no income, we
are re-applying for him. So, this is longer than I expected but I think it is pretty current of our status at this point.
Elaine, Mom to DS, 19, seroquel 100mg at night (or when he sleeps, sometimes!!)
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Rayni |
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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.
Rayni, mom to Nick, 22, SSI, topamax, abilify, buspar, (Asperger's, bipolar, anxiety); prilosec
(reflux); zyrtec-D, nasal spray (allergies); metformin (insulin resistance)
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jhmom |
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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! Quote:Mom to Jordan, age 12: Currently in Residental Care @ hospital Asthma Severe allergies Bipolar ADHD possible PDD-NOS taking 100 mg Seraquel in the PM Singlair and Claritin |
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justlovehim |
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Good luck. I hope it is expedited through. I hope I'm not offensive, but can he not work at all? Good luck
DS-Matt,17 : DSolder- 24 : DD- 22 Depression, dx May 2008, ADHD- dx age 9 refuses meds Waiting to see if he will attend the "Mountaineer ChalleNGe Academy" "Rejoice in the Lord always. I will say it again: Rejoice!" Philippians 4:4 |
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momofalexa |
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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.
Heather
Mom of Alexa, (17 years old) Diagnosed BP-NOS (09/05), updated to BP II w/psychotic features (05/08) Oppositional Defiant Disorder Abilify (10 mg), Lamictal (200 mg), Klonipin (.5 mg) as needed Topamax at night only (100 mg) Seroquel at night only (200mg) *when she is willing* Attends alternative therapeutic high school (Ohio) |
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Anita |
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Good to hear from you. Is he somewhat stable at this time?
Anita, mom to Kat,24, BP, living with us,mother to a 4 yr old and 2 yr old,on topomax 300mg, cymbalta200mg
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Elainekh |
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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, Chris, not offensive. He's always had issues with his brain "turning off and on like a light bulb" where his
behavior changes or he loses track of conversations or even sentences. 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). It appears these things are coming back again
and we need to get more control of them. We got a medical withdrawal from the last semester of college cuz he was just unable to complete enuf to get a grade
or credit and it was after the withdrawal period had closed. He's also so fatigued that he cannot be relied on to be where he is supposed to be when he
should be there. He may be able to work at some sort of job that would be flexible with times and not being able to do more than one or two instructions at a
time. He still (since a child) is unable to follow more instructions than that at a time (ya know, 'go clean your room', still is unable to be
processed. We still need to break things down into really specific one/two combinations. So, at this time, getting a job would cause more stress that would
cause more frustration, anger, rage, until we can get something more figured out. Don't know if that really answered anything but it all is to say, at this
time, he is unable to work and only takes one or two classes at school, and they weren't academic as such, more art/photo. He is seeming more positive
today, not so depressed, but .... as we all know, that can change at the drop of a hat. He is currently on my insurance (after getting a letter from doc that
he is unable to attend college full-time through this year). As for next year? guess we'll find out then. But, if gets SSI, will get medi-cal (medicaid).
In California, the medi-cal is automatic if you receive SSI (at least up to now has been automatic). If he continues to be classified as disabled, I think we
could keep him on my insurance. It's late, and I'm tired. So if this doesn't make sense, ask away! In the process of SSI, if you are working, you
will be denied. One of the questions was if you were applying for jobs. So, I told him, just wait, see what happens before being stressed about a job. He did
try in the last 6-8 months but was not hired due to lack of experience and the economy in general. Thanks for all you concern and friendships!
Elaine, Mom to DS, 19, seroquel 100mg at night (or when he sleeps, sometimes!!)
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momofalexa |
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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 would mention in case any other parents see the signs with their kids. We had a lady at work with epilepsy. She would stare into space, not be able to communicate for, say a minute or even two, and would lick her lips. Then she would be "back". She was put on Topamax but it did cause major cognotive dulling issues. Sigh. How annoying, that the meds to treat such things have these intolerable side effects! Here's hoping the SSI goes through and quickly...
Heather
Mom of Alexa, (17 years old) Diagnosed BP-NOS (09/05), updated to BP II w/psychotic features (05/08) Oppositional Defiant Disorder Abilify (10 mg), Lamictal (200 mg), Klonipin (.5 mg) as needed Topamax at night only (100 mg) Seroquel at night only (200mg) *when she is willing* Attends alternative therapeutic high school (Ohio) |
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Rayni |
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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 always really tired too. He can't work either, mainly because his anxiety level is so high. Sure hope the SSI comes through soon. And that's cool you got the medical withdrawal from the college.
Rayni, mom to Nick, 22, SSI, topamax, abilify, buspar, (Asperger's, bipolar, anxiety); prilosec
(reflux); zyrtec-D, nasal spray (allergies); metformin (insulin resistance)
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tinymomthree |
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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 absent seizures. I have wondered if my younger dd had them, but I read that they usually improve after age 12. There is also those eye
seizures. occipital? or something like that which is related to having headaches.
hugggs
Tina
dd age 18 bp no meds ds 16 and dd 15 Ld's |
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justlovehim |
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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.
DS-Matt,17 : DSolder- 24 : DD- 22 Depression, dx May 2008, ADHD- dx age 9 refuses meds Waiting to see if he will attend the "Mountaineer ChalleNGe Academy" "Rejoice in the Lord always. I will say it again: Rejoice!" Philippians 4:4 |
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JoAnnSW |
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Thinking of you and hoping things work out for the best.
JoAnn, daughter 22, dysphoric bipolar disorder and insulin dependent diabetes, currently controlled with Lamictal, 400mgs, Lithium 450mgs, Seroquel 500mgs,
Klonipin 1mg and two types of Insulin
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Elainekh |
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MRI scheduled for tomorrow (Wednesday). Will find out tomorrow about EEG and neurology appt.
Elaine, Mom to DS, 19, seroquel 100mg at night (or when he sleeps, sometimes!!)
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momofalexa |
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Oh, let us know how it goes, Elaine. Hoping everything works out well.
Heather
Mom of Alexa, (17 years old) Diagnosed BP-NOS (09/05), updated to BP II w/psychotic features (05/08) Oppositional Defiant Disorder Abilify (10 mg), Lamictal (200 mg), Klonipin (.5 mg) as needed Topamax at night only (100 mg) Seroquel at night only (200mg) *when she is willing* Attends alternative therapeutic high school (Ohio) |
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justlovehim |
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Yea, keep us posted.
DS-Matt,17 : DSolder- 24 : DD- 22 Depression, dx May 2008, ADHD- dx age 9 refuses meds Waiting to see if he will attend the "Mountaineer ChalleNGe Academy" "Rejoice in the Lord always. I will say it again: Rejoice!" Philippians 4:4 |
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Rayni |
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So, what's the verdict on appts? How did MRI go?
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Elainekh |
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MRI went well. Still have EEG and neuro appt but no dates yet. I'll let you know.
Elaine, Mom to DS, 19, seroquel 100mg at night (or when he sleeps, sometimes!!)
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jalmil |
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Good luck Eliane!
Lynn
Alex 16 - Dyslexic and STILL learning to drive Step Mom to :
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