J O Y

[Austinsmom]

Hi,
How is Brittany doing in college?? I read your other post, She's working Too, wow she is such a go getter, how are you doing...
Austin has had some very hard times and being so many miles away my husband and I feel ripped up sometimes, (sigh) I have this terrible fear he is really not ready, Thank goodness for cell phones and the internet, but all Austin wants and ever wanted is to go to college, so :) there he is, he loves the classes, and professors. but he was newly Dx'd with DRD dystonia, tests show a movement disorder and that he was having seizures right to the surface but his meds were working, they showed on a 4 day EEG, he had the results the day he moved down to college, they started him on Sinemet, he has had roommate problems, moved 2 times, many lessons were learned, many concerns, but he keeps on, and seems to be doing well. except...buses...are not easiest in orange county, my husband, stresses a bunch about Austin, which is surprising :p
I wish we lived in the same town, is it better?... it must be and a bit more affordable. I know Austin has to do this, and I am so proud, but man with all our kids have been through I think it is much harder to feel comfortable at this moving yet our kids grow up, and thank goodness they are all doing so well :)……..
I was so happy to see you here ,as always Joy I am glad your here, you more than anyone understands where we are at, Thanks, tell me about you and yours
Love to you
Deborah

[Brandon's Mom]

{{{Deborah}}}

I'm sorry to hear that Austin is having such a tough time of it at college so far. I guess the good in it is that he is enjoying and doing ok in the classroom portion of it and the perimeter issues are where the problems lie.

I would have to say that I don't think Brittany would be doing nearly as well as she is, if she weren't still here at home while attending college. She doesn't handle stress any better than I do, so her having Mike and I here to talk to every night prevents her from having her worries build up. She's taking 4 classes M-W-F and works on T-Th and spends nearly her entire weekend doing homework. Her job was supposed to be finished up this month but as it stands right now, there isn't an end in sight so she will continue at this company until their project is finished. The longer, the better, because she likes having the money coming in and the flexible schedule.

Brittany hasn't had too many problems with the transportation but she does take the city bus and has been on 2 that broke down which caused her to walk a long way to get to school on time. It is definately more affordable having her in town since she has a bus pass that was free (she got that from her employer- the college charges $80 per semester I think).

Brittany is very surprised at how well she is doing in her courses, she really hates doing essays so she can't wait to get home and tell me she's getting good grades on them. Just this week we got the results of her Weschler testing that I asked the high school to do last year and it still says she qualifies for special education, although her IQ did go up a few points since her neuropsych testing was done several years ago. This time, rather than having reading comprehension stand out as a major weakness, she tested out as having a major problem in math. We knew that! :rolleyes: She has always struggled with math, but she got a B in pre-cal in high school so we are hoping for the best in college. Next semester she will start taking college level math, she wanted a semester off of it after high school, and I don't blame her one bit. She isn't receiving any assistance from the college yet, but we will definately not hesitate to ask, if she feels she needs some accomodations.

How am I doing? pffft... um.... my mommy taught me that if you don't have anything nice to say, don't say anything at all. Does that answer about sum it up? ;)

Tit for tat- how are YOU doing Deborah?

Thanks for asking about us dear.

[DystoniaGal]

Deborah

DRD dystonia is the easiest of dystonia to treat. How is Austin responding to the Sinemet? Not sure if you remember, but I have DYT1 positive dystonia. I had deep brain stimulation for it about 3 1/2 years ago. I had an infection and that caused me to get hydro. If Austin wants to talk to someone with dystonia and hydro you can have him email me.

The one thing I have found, when my ICP goes out of whack, so does my dystonia. Stress also aggrevates along with lack of sleep.

Suzie

[DystoniaGal]

Forgot to mention, it would be in your best interest to have him see a Movement Disorder Specialist. I don't remember where you guys live, but I want to say somewhere in California. There are some great ones out in California. My sister used to see Dr Helen Bronte-Stuart when she was out in Palo Alto for grad school.

Any questions please ask. There is also a young lady on here that has DRD, her name is Vettey and she posts over in the dystonia forum.

SUzie

[DystoniaGal]

bumping so deborah will see

[Austinsmom]

Hi sorry I was off the computer for a while, computer and time problems

Joy I am glad to hear Brittany is doing so good, living in a large town has it's advantages. Austin he too hates doing essays, and in fact essays are the hardest part of any test for Austin. I wish you were feeling better Joy, I am sorry you are having to deal with any troubles, getting old sucks Huh;) me I am falling apart and rotting and my insurance is fighting me all the way, but that's another story...
Austin was at home this weekend with us, it was wonderful to see him, he was at friends most of the time but he did fit us in a bit:) he is doing OK, he has taken 2 very big test and got a B on one and a C on the other, he is not happy with the grades but with his memory problems it is so hard for him, he studied his head off. his room is 1/2 a bedroom 1/2 an office, it is hard for him to find friends, and that is hard for him. But he had a great weekend, and we loved just seeing him.

Suzie, Austin is doing well, Austin feels he is responding great to the Sinemet, he has not had one paralyzing episode since he started Sinemet, Stress also aggravates Austin along with lack of sleep, or fevers.
Austin has not fallen down and he thinks it helps him with everything just a bit, I think the L-Dopa makes him happy and he feels better and that is good, but... I worry about such heavy medicine, so young and the possibility of a connection with DRD and Parkinson’s, but if it keeps him walking and his legs stay strong it is great!! even his Ataxia is better J
I have a million questions, about it all, but for today I will go with the ..this medicine is doing wonders for Austin, I am so surprised, it worked very easy and helped so quick, I think anyone who has kids with Mild CP who's problems get worse should check this med out, I wonder how many kids and adults are in wheelchairs and all they need is this med...as I said I have a million questions.
I hope you guys have a great day sorry it took me forever to get back to post but 2 million things came up and one of our computers went down..
Love and hugs to you both,
Deborah

[DystoniaGal]

Deborah no need to apologize. I am glad to hear that Austin is having a good reaction to the sinement. Along with Ethan who is responding well to Artane. Both of those meds made my dystonia get worse. DRD and PD are not affected by the same part of the brain. Dystonia is the GPI and PD is in the STN. It might do some good to get him tested for all the genes that are known for dystonia.

A good movement disorder specialist in Cali is at Stanford Dr Helen Bronte Stuart.

Suzie

[Austinsmom]

Thanks for asking about Austin,
I do have to do more reasearch on DRD, I hate to even question what questions are in my mind, I wish we lived by Standford, great doctors there, Stanford is 400+ miles from me, but my sons Neuro, told Austin sinemet will work or you will know it doesn't work "right away", I am going to ask how much a gene test will cost because, the insurance Austin has will not cover any gene test:rolleyes: :mad: :rolleyes: Austin had a huge gene test done under ataxia research at UCLA but the research is still going on and the tests have not become available :confused: I am not sure how to get him tested but to see about paying it ourselfs and we are not doing well due to me being on disablity right now, I will also talk to the neuro about if Austin should see a movement disorder Dr. When I look up DRD it always has many remarks about Parkinson’s, I have read some that say many of Austin’s symptoms and problems go with Juv. Parkinson, I do not want this to be the case, but it too is a question for the Neuro :rolleyes: but Austin is very pleased with Sinemet and he is walking so much better We are happy and thankful for that:D no more falling is great!!! Thank God we have an answer. I must go but I will post to you if you don’t mind maybe I should go to the Dystonia forum.
Family's coming home, must go
Love
Deborah

[Denese]

{{Joyous}} Won't comment on you :p

Yeah for Ms Britt...heck Austin too!!! They've overcome so many obstacles...I'm proud. Elementary school is hard enough...college seems like a pipe dream.

I read on the CN board about Brandons work issues...how's that going?

I had to clear my head ya' know?!?! Lotsa catching up to do.