Ugh...the Nightmare Continues
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| Tue, 07-24-2007 - 12:40pm |
Yes, I've been MIA for several weeks thanks to Claire's "issues". She is now completely off of the Risperdal, and things have been ugly, to put it lightly. The mood swings are constant and there's no way of knowing when they're coming or what's going to cause them. They're happening 6+ times a day. The bright side is that, as of yet, the meltdowns haven't turned into rages. She screams and cries, but doesn't get agressive. Amen for small favors, huh?
I think the increase is due, in part, to the horrible EEG experience. It's like she's having post traumatic stress flashbacks. She'll be giggling at something on TV and then start crying, "I not go to the doctor. I never ever go back to Children's Hospital. I don't not want to be a mummy, I want to be a mommy and a sissy!" (When they wrapped her in the papoose they told her they were going to make her a mummy. Like she was going to understand what the !$#@ that means!) To hear my husband relay the story, the experience was traumatic even for him...and seeing as how he's a medical professional who used to work in a morgue, it takes a lot to traumatize him! At one point the stupid tech said something to him like, "Trust me. It's much harder on the parents than it is on the kids!" My DH stopped short of screaming, "Oh is that right, idiot? And when the last time YOU were a 6 year with autism who had no ability to understand what was happening to you???" Hard to believe this was happening at a Children's Hospital, huh?
We meet with a new ped. psych. on Friday morning. (Our old one, who we loved, is closing her practice at the end of July.) I'm trying to have an open mind, but have gotten less than a "good vibe" with the new one. When we asked about how they wanted to go about getting a hold of all of the kids current psych. medical records they said, "Well...we'll just wait and see what the doctor wants before we request anything." Excuse me? How is he supposed to know what he wants if he doesn't know what's available? It's like ordering dinner in a restaurant that has no menu! Then when we went to ask for a complete copy of the kids medical records for our files, we were informed that it would cost us $.77/page for the first 25 pages and then $.55/page after that. NICE, huh? It'll cost us a couple hundred dollars just to get copies of both of their files.
Oh...and you'll all LOVE this. I went into our school district's admin. office to fill out an application to be a parapro. They looked at me funny, handed me a file, and would you believe the ONLY requirement is passing a background check? They didn't even ask me for my employment history. There was no actual "application" to speak of!!! Even WAL-MART makes potential employees take a basic skills test. When I turned the paperwork back in they said, "You seem overqualified." And they wonder why these 1:1's don't last but a couple of weeks?!?!
Oh fudge...gotta run. My 15 minute break-from-a-meltdown is over. I can hear another starting upstairs. Joy...oh joy.
Amy


(((((((((Amy)))))))))))
Man oh man! What can I say?
visit my blog at www.onesickmother.com
((((Amy))))
I was wondering where t=you were. Oh you poor poor thing. I know where you are right now; it's a horrible and often frightening place. Just know there are people out there who have answers for you; unfortunately it's not always the first one you call. So if this doc isn't helpful or you have questions about him/her do not be afraid to go elsewhere. The one thing I would suggest is be open to medication suggestions, but do not (not that you would) be bullied into what the pdoc wants. Remember you've known Claire for over 6 years and the pdoc will have known her about an hour.
I can't remember the side effects you were dealing with on risperdal; I remember we discussed the night waking, was there other ones, or was it just like taking a placebo?
Other anti-psychotics that have done well with other Auties are abilify and geodon. Know that the latter can cause sedation, but it did help Liam for a while.
Tripleptal is a hit and miss med; works agreat for some, does bugger all for others (Liam was the latter). I know Evelyn's David does well on trileptal and abilify though.
Then there is seroquel; has had good results with many who cross comorbid dx, can also sedate though, and often it needs to be a higher dose before it works. ie: the behavior gets worse as you titrate up, then once you are at a therapeutic dose it works very well.
I do hope you get a pdoc who understands and "gets" it
Hugs, hugs hugs hugs hugs! I wish I was closer to help you though this. Call if you need to, and you have my email.
Dee xx
oh ((((Amy))))
I'm so sorry this is going on!
{{{Amy}}} Chris started out doing really well with risperadal but I have noticed an increase with his rages the last few days. Didn't get a full fledged one, but obviously more intense since he first started the meds. And it scared me because I could see the rage building.
I hope you find something good for her. I might have to switch anyway because he's put 15 pounds on since April, and I don't want to see it continue.
Lainie
((((Amy)))))
What can I say but I am sorry you are going through this. I hope you get some peace soon with this whole thing. That EEG sounds horribly traumatic for her. Was there even any resuls from it worth while after that?
Have you tried anxiety meds? I can't remember. It sounds like it is time for something like that. Luvox was a good one for Cait for the anxiety and obsessive stuff.
I hope the new ped psych is better than you think. Sometimes first impressions are wrong.
WHOA on the parapro job thing. I guess they are REALLY desperate for people. "Yes, thank you, any warm body will do" On the bright side you will be wonderful AND you won't have to deal with alot of bunk in getting the job.
Renee
As always, thanks to all of you! I'll try to respond to the individual questions in a single post, and save everybody the hassle of reading a bunch of replies to replies! LOL
Paula- I just got the EEG report today, which we had to call and request. Essentially it's inconclusive because of "the patient's limited cooperation." DUH! Oh, and to top it off, the history is completely wrong. Says she's Dx'd ADHD (which she's never been) and possible autism. POSSIBLE MY A$$!!!
Dee- We're definitely willing to consider different med, and at this point, I'm leaning towards a mood stabilizer. Not sure which one, but from the research I've done, I think this is our "next best option". With the Risperdal the increase appetite issues were huge, she was sleeping all the time, and we never really saw a noticeable improvement in the meltdowns...at least, not noticeable enough to warrant the continutation of the med with all of the side effects. KWIM?
Debbie- Thanks for hugs. What am I doing for myself? Does staying up until 1:00 a.m. reading and then sleeping until after 10:00 a.m. count? I won't lie, I'm pretty miserable right now. I actually admitted to DH last night that what I wish I had was just one friend who I could do something as simple as go shopping with! (I have two family weddings, a bridal shower and bachelorette party over the next two weekends and having put back on almost all of the weight I lost last fall...am hurting for clothing.)
Lainie- Thanks for love...and commiserating with me. The weight gain on the Risperdal is NUTS isn't it? We just had to buy Claire all new shorts for the summer and she was on it for less than two months.
Renee- Like I said in my response to Paula, no...the results weren't worth the paper they were printed on, IMHO. I can't remember if we've tried an anti-anxiety medicine yet. I'm pretty sure that's what we tried first, but for the life of me, I don't remember which one. I've not been very good about keeping of record of which child tried which med...but with the cost of having medical records copied, I've decided to start! With the job, I did my research and realized that I've met the qualifications to be a certified state and NCLB teaching assistant. Okay, so that's not exactly a big deal, but it's worth a bit more money than being a "student facilitator". I gathered up my documentation, filled out the paperwork and sent it in so that I could have the actual "certification". I'll let you know how it goes!
Again...thanks to all~
Amy
totally OT here but you would not believe how many clothes I have around here, and they are ALL SIZES (well, 12 and up)...so if there is any way I can help you can let me know (really, I have got a TON, it would be no trouble).
(((Amy)))I'm sorry to hear that you're having some rough times right now. I hope things look up for you very soon! Sending cyber hugs your way...(((())))
the other Amy