On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Thursday, January 14, 2010

more on Aspie boy

because i still don't know how to respond directly to comments ... LJ? no problem. I can maneuver that blogosphere. Blogspot? it befuddles me. Anyway, here's an updated post. If you haven't read the first post on Aspie Boy's new meds, read that one first: http://threesmithkids.blogspot.com/2010/01/just-one-more-thing-on-my-list.html

OK, so since everyone had wonderful comments, I realized i didn't give enough history on Aspie boy's mental health issues so my readers can give more direct help. Although I'm totally loving all of this attention, literally eating it up! so nice to be loved, even in virtual life.

Aspie Boy has a gentic disorder and is symptomatic for Asperger's and ADHD. In other words, he has a genetic cause for his issues. He has a host of minor medical issues including a geographic tongue, reflux, chronic constipation, severe allergies and minor skin issues. He wears ankle-foot orthotics for chronic toe-walking. Then, the icing on the cake is all the spectral issues. His IQ is 80, just 2 derivations above MR so he is cognitively impaired and developmentally delayed. He has a paradoxical affect to just about EVERYTHING both Rx and OTC which makes medically treating him very difficult. (with an MRI we did to rule out a seizure from a minor concusion, it took adult sedatives to take him down at age 4 and even then he only stayed mildly sedated for 20 minutes with a FOUR HOUR scream-fest side effect as he came out of the drug). He also has incontinence issues, typical of developmental delay.

When he was diagnosed at age 4, the neuropsych and neurologist and specialist, without reading each other's charts all said the same thing: expect to see bipolar with onset of adolesence with possible seizure activity around age 10 through puberty.

Bio history: First mom is bipolar with a schizoid affect. First dad's history is unknown other than he was in the mild/moderate resource class with a seizure disorder and genetic disorder.

So he's on lots of meds to treat his medical ailments and we've tried the following meds for the spectral and ADHD issues:
Clonidine - no success
Methylphenidate - OMG, NEVER again
Tenex - a reprieve from the stimming and helped him sleep but as his body has adjusted, it has become less helpful. Increasing the dose made him volatile and moody. He'll stay on this one though at the 2 mg level
Melatonin - we started at 3 mg and are at 5 mg currently
mineral and vitamin supplements - no affect
GFCF - not even going to bother. He just has too much going on for it to be worth the effort, plus he has extreme sensory issues including vomitting to food textures. THAT's not fun.

Sometimes it's really hard to determine if the ADHD is more sensory driven than anything else so we do alot of at-home OT techniques to reduce his sensory input which helps for a little while but gosh, I'm not an OT and I can't do sensory input for him all day! Trampoline, water and deep compressions are optimal.

See, I'm well versed in the spectral stuff AS WELL as RAD. *beams at self* I'm multi-skilled. lol

OK, so the new med is Trazadone, 50 mg. The info says specifically that it is used in low doses for insomnia. This choice was made after 3 years of upping his Melatonin and getting success but only for a little while and upping his Tenex and discovering it made him very moody and angry.

Right now, he's so crazy, I can't do a thing for him! He's in bed because typical of spectral kids, routine is law but falling asleep? not so much.

So here's what happened to Sissy and why I'm seeing direct parallels:
Sissy tried every ADHD med on the books with only minor success. We moved to straterra. nope. She had extreme sleeping issues and bed wetting issues so the doc put her on a low dose of elavil (25 mg) last September. Getting the appropriate sleep tossed her into a manic state. She was put on Depakote at 500 mg in November with a diagnosis of bipolar (although until she's an adult and her bipolar is legitamizable, her charts read "mood disorder") She was on depakote for four months and was only minorly stable. We put her on wellbutrin, she had some seizure-type activity. By September we were taking her off wellbutrin and depakote and putting her on lamictal with abilify to carry her moods. That didn't work. She switched to respiradone (2 mg) and the RTC added toffrenol (sp?) in December.

Bio history - first mom went to RTC at age 13, diagnosed bipolar at the RTC, put on lithium with ECT to stabilize her moods. She never went home. Bounced from group home to RTCs to foster until adulthood.

All the kids have different first dads with different medical/mental health issues because typical of adults with severe mental health issues with cognitive impairment, they pair up with other adults with severe mental health issues with cognitive impairment. Fun. It's like playing chess with a blindfold on.

gotta love DNA.

I'm waiting for the day someone hands me an honorary PhD in psychiatry.

OK, now that you know all of the medical story, give me more of your excellent advice! lol


Anonymous said...

Each kid is different, lots of trial and error, all I can share is what combo worked for us. Risperidone has been amazing, 2.5mg/day, the *only* way for mine to function outside of a psych hospital. In addition Depakote helps the moods (good but not as drastic) but much higher dose - 1500mg/day - we needed a blood test to find the correct max dose for her. I hear lithium would be the next stronger med for bipolar, but so far depakote with risperidone has finally stabilized it. And the sleep is great now too, I'm not exactly sure what that is due to.
Also add on low doses of ADHD and antidepressants but ADHD and anti-depressants meds make bipolar worse. So when the bipolar is really bad we back off on these meds and mainly treat the really urgent issue (for us) bipolar.
Also has family history of mental health issues, and a very low IQ.

Diana said...

So, did you take my last advice and take a bubble bath? :-)

There's a couple of ways you can respond directly to comments. You can either post your own comment right below it - just post as if you were commenting on anyone's blog. Some readers may or may not come back to read the additional comments, though. Or, they may subscribe to your comments and get email notificiations when anyone posts a comment. I personally read too many blogs to utilize this feature, myself. Another way is to answer them in a subsequent formal post (or at least direct specific readers to your former comments so they know you've responded to them) or if you want to take the conversation off-line, several of us have private email addresses linked to our blogs. There's a link to mine on my sidebar.

As for the rest of the stuff, I'm definately not the one to ask for advise on meds. I'm not a huge fan of doctors in general, but I HATE pschiatrists with a passion! Every single one I've taken my kids to have been unsympathetic, pompass idiots who do nothing more than act like holier-that-thou drug pushers. They also all told me I was stupid for adopting my kids, I should have expected problems, and that I should disrupt and/or let DCFS run my life. I don't think so!

As for meds specifically, I hate the stuff almost as much as I loathe the psychiatrists who push them. But I have to keep my kids on ADHD meds. It's the only thing that even remotely allows them to attach or to be "normal" little kids for awhile. All the sleep meds, including melatonin, give my kids nightmares (me too, actually) or have other side effects that make the cure worse than the ailment.

Sleep is such a hard one, though. Especially since without sleep, everyone is wacked out...and when the kids don't sleep, Mom doesn't sleep either, which only exponetially compounds everything. Wacked out kids + wacked out mom = YIKES.

You're dealing with more than I've have in this department given there are physiological medical issues behind the sleep issues. However, I can relate, at least on some level. I have medical issues myself that make sleep very difficult, and also very precious when I do get it. If I wake up during the night, or espeicially if someone wakes me up, it's curtains. I may as well get showered and dressed for the day because 90% of the time, I'm done. There's no going back to sleep for me, even if I've only been asleep for an hour or so. My kids, unfortunatley, have night terrors/night mares, most of which are associated with PTSD and they are terrified to go to sleep...or more likely to go back to sleep if they've had an episode. So, they are frequently awake during the night and often look and act very sleep deprived during the day.

The only thing I've found even remotely effective is to change the bedtime routine. Hot shower with lavendar soap right before bed, snuggly jammies, and a calm atmosphere in the home. Ha, so what did we do tonight? Played Mario Kart on the Wii together right up until I tucked them in. We'll see how that goes!! I'm thinking it will be ok, because it was fun and playful, not emotionally stressful and angry, which 100% of the time causes big time restlessness and sleep disturbances.

Hang in there!

Kids Special Needs said...

I'm new to your blog, and I love it! We too have a son with Aspergers & Bipolar. It's been overwhelming, so I haven't blogged in quite a while. But suffice it to say, the mood stabilizing drug is not enough, even at the maximum dose. So this week we are adding & starting Zoloft while we wait for (enter fingernails screeching on a blackboard)...an appointment with a psychiatrist next week. Wish me luck!

I really appreciate your blog and can totally relate. Best wishes to you and your family.

Stacy said...

Wow! I admire you for all you have to deal with. I hope somehow, something will work. {{hugs}}