of all the dx..
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of all the dx..
| Fri, 09-01-2006 - 9:49pm |
Of all the dx that your loved one has been given - which one was the hardest for you to accept? Which one had the most impact on your daily life?
After 7 mos I was almost accepting the asperger dx. In the background other dxs were making noise. But I felt comfortable and accepted at this message board and thought life will be hard but it will be okay. Then the background noises got louder and bp was recognized. I find bp harder to accept.For me it seems scarier.I'm not sure if it is because bp is new or because I had finally was at peace and working on what son needed as an aspie.ADHD also made an appearance. I am not convinced that ADHD is a separate issue from the ASD. Just some thoughts..
After 7 mos I was almost accepting the asperger dx. In the background other dxs were making noise. But I felt comfortable and accepted at this message board and thought life will be hard but it will be okay. Then the background noises got louder and bp was recognized. I find bp harder to accept.For me it seems scarier.I'm not sure if it is because bp is new or because I had finally was at peace and working on what son needed as an aspie.ADHD also made an appearance. I am not convinced that ADHD is a separate issue from the ASD. Just some thoughts..

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hmmmmm, hard to say but I do think it comes perhaps from your personal situation, point of view and experience.
For instance, I have a close friend who's son is BP but they have often tested and ruled out autism spectrum stuff. I have a son who has HFA but who often has symptoms of BP which has been questioned on a bunch of occasions (but I don't accept that as a diagnosis. I honestly don't think he is true BP).
her and I have talked. To her getting an ASD diagnosis would be horrible, the unknown, etc. She feels the BP is addressable with medications, etc. Autism to her is permanent and uncurable/untreatable. You teach them skills and hopefully enough for a fullfilling independent life but no medications can treat it. For her it is the evil that known. For me the thought of a BP diagnosis is truly very scary. Again it is the the unknown. I know how to deal with autism. Autism seems almost more acceptable to the general public than BP so Mike would get more understanding than a child with BP. BP comes with other scary things.
For both of us, I don't think it is which diagnosis which is scarier it is the second diagnosis which is scarier. I think that it is hard enough to wrap our brains around the first and deal with that. To suddenly be treatened with a second diagnosis of equal weight is almost too much.
So maybe it isn't our personal experience and POV as much as which came first, which one we have a better understanding of.
Renee
My son is dx with Asperger's and "mood disorder not-otherwise-specified". I sometimes just say "bipolar" for short, because that's basically what it is.
On the one hand, I don't think of the BP very much, because currently those symptoms are taken care of by medication. When he has "off" moments, like a meltdown, or some inappropriate social behavior, or being completely unable to break off from Lego-building to come to dinner, it's Aspie stuff. I wish I knew more Aspie kids for comparison. Things I find on the web and in books tend to make Asperger's Syndrome out to be this sad, pathetic thing (and there is always sad-after-school-special piano music playing.) David's not geeky, or awkward-appearing. He seems to be liked by his classmates. He's sweet, funny, intelligent, good at Legos, and good-looking. He doesn't get invited to playdates, but so what? He's not interested in playdates anyway. (It's possible that he does get invited, and just shrugs it off.)
On the other hand, I understand that mood disorders often (usually?) need to be treated with medication for the rest of a person's life. Without the meds, a mood disorder can life-threatening because of the high risk of suicide and also dangerous, reckless behavior when manic or influenced by a delusion or hallucination. Without meds, the mood disorder is much scarier than AS. Believe me; I've seen enough of it. I fear for David's future sometimes. As an Aspie, what kind of career will he have? Will he have a medical plan? If not, how will he afford his medication? Will there always be someone to crush up his little pills and mix them with Kool-Aid powder and a small amount of water in a little plastic cup twice a day? If he misses a day or two of his meds, what will happen? It's so terrifying to me, that I'm constantly aware of my own mortality.
So, for me personally, it's the BP that is scarier...at least it's the symptoms that I assume are attributed to BP. I see bipolar as an illness. There is not positive side to it, especially since he doesn't cycle, but has "mixed states" which are the most dangerous. I see David's Asperger's Syndrome as his brain working differently than most other people's. I cringe when I hear it referred to as a "disease". Asperger's isn't a disease any more than being an athlete is a disease.
Evelyn
After a friend and family member suggested Autism to me and I got past the angr of it and started reading about AS, I knew this was my child. I accepted the diagnosis (twice) fine. What hit me hard were two things. First was when the Dr. said he thought our ds was about in the middle of the scale, per se. I was convinced my ds was very mild. Second was when I was in class with him one day for a school event and I could see whith my own eyes that he was different from the other children. That hurt me the most I think.
I am sure the diagnosis of BP is difficult, although from what I have read (which I know isn't much) isn't it pretty managable with medication?
Good luck, I know all of this is hard all the way around.
Melissa
Melissa,
To answer your question about BP being manageable with medication: Yes, it is. However, there are many different medications in various categories, and each kid responds differently to each medication. So there is often a long period of trying different combinations of meds. We got lucky; the first one we tried was effective and had no side effects. Sometimes people have to settle on a medication that has undesirable side effects, and sometimes side effects are unacceptable. Also, as the child grows, a medication that used to be effective can stop being effective. I got to a bp message board sometimes, and there are a lot of people out there who have kids who are really suffering (and their families, too.) because they haven't found a combination of meds that gets the child stable and safe.
Another problem with BP is that it's often misdiagnosed as ADHD or depression, and the stimulants or anti-depressants which are prescribed can actually cause harm because they send the child into a manic state.
Oh, and one more thing. The meds can be real expensive. That's no big deal when you've got a good health plan, but imagine...a young guy with AS and BP forgets to take his medication one day and freaks out at work. He loses his job and his health plan, and probably is going to have a hard time finding another because of his hidden disability. He stays off his medication, and because he's so manic or so depressed, along with being autistic, doesn't recognize his own need for medication. Next thing you know he's dead or in jail because of something related to his disorder. It's a pretty ugly thought, I know, but it's something I worry about.
Well. I guess I've spread my little bit of sunshine for the day, eh? ;)
Evelyn
To me---BP is the worst!!! We got the bp dx at 5yo and ASD dx at 6yo. The mood swings are not 100% manageable at this young age. If they are-----it would be rare!! Their brains are growing and hormones kick in at puberty, etc. It is the worst thing ever---bipolar!!!
I hate to see my baby boy in such rage and defiance, and violent!!
ASD is no big deal to me. That part of him is just that he sees the world differently from us. I plan on my son being the next Bill Gates!! But at 6.5y--he has plans of building a Lego Store next to his house and of course--building it with Legos. That would be his ultimate dream!!! Since that's all he's EVER played with since 3yo---and of course the gameboy/xbox thing.
Holly
Jacob--6.5y
Anxiety
Bipolar---risperdal and strattera (YES--its working--but not without an increase of risperdal every few weeks!!!)
ASD
From around age 2 I had always had my thoughts as to Liam being asd.
Hi...
I've been searching for other kids who take Risperdal. My son Dominic (8 in 2 months, only about 46 inches and 46 pounds, Asperger's and Sensory I.D.) has been on risperdal for 1 1/2 years. we started at .25, and have settled now at .75. He takes 2 at night around 8 pm, and the 3rd at breakfast to help through the school day. He changed to a new doctor, who prescribed Concerta, so he's been on it for about 2 weeks. I don't see any huge changes, although my partner does. History: I just moved in with my SO and his daughter about 5 weeks ago, so the changes that he sees, I feel are just Dom's way of adjusting to all the changes (new house, new sibling, new stepdad, new custody schedule with his own dad, new summer camp, now new school (which he is LOVING), new doctors and dentists... you get what I mean).
I just wondered how everyone feels about medication. I had a hard time making the decision, and in all honesty would like to take him off all the meds and see how that goes. Has anyone tried that, or thought of trying it, with doctors approval and check ups?
Thanks,
Nicole
Mom to Dominic (7) and Nathan (4)
Step-Mom to Lauren (6)
Liam is on 0.25 mg in the am and another 0.25 in the pm.
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