Pppffffffff Rant time

[peglem]

Last week-PMS and found out no RDI unless I can figure something else out to pay...

Anyway, @ the beginning of October, the school nurse called to ask if I'd given Allie her risperdal- I had. She and the psychologist (who had her call me back a couple of times to deliver messages) thought that the risperdal wasn't working. I already thought that because the few days that I forgot to give it in the morning- they didn't call, but I got alot of calls on days that I had given it :rolleyes: . So, Psych guy wants me to get an appointment with her psychiatrist and seek a med change. But, I don't wanna- the psych does nothing!!!!! Just comes up w/ another med to try- I'm tired of trying and trying meds. I was due for a neuro appointment anyway and the Lamictal she is on for seizures is also an anti anxiety med. So, I weaned her off the risperdal and we're doing a slow lamictal increase. Also, we switched her (just this weekend) to zithro instead of pennicilan. Last week she was getting very OCD and weepy-sobby actually. So, yesterday, we were happily commenting to one another that Allie was sure having a good day. She was happy all day- and eating again! This morning she got up in a good mood, was very cooperative- great morning. So imagine my surprise when the nurse called asking if I'd given the risperdal this morning. I should have just said yes- but I'd sent the med change paper last week. I told her Allie isn't on risperdal anymore. She asked if we replaced it w/ something and I told her we were increasing the lamictal. She said she hadn't gotten my med change paper and was sending another.

So her teacher sends the paper, writes that Allie tantrummed all morning and, she heard I took her off her meds!!!!!!! She's been off the meds for 2 weeks and you're just now noticing!!!!!! I have for a long time thought that the risperdal had a placebo effect on her teachers. What does that say about the meds? I honestly think her health has a lot more to do w/ behavior than any med we've ever tried.

Ugh. I don't really need advice- I'm sticking to my guns here. Her behavior is much better now at home and I want to give the lamictal and zithro a chance. I'm just tired of all this constant crap. Why was the school so frikken surprised? It was their suggestion to take her off risperdal and try something else. Next time, I'm not telling them anything unless there might be conflict w/ OTC stuff or something (even then, they should call me for permission).

[Kristen (ColeysMom)]

:mad:

OMG! I don't even know where to start with this!

:mad:

AND I need to pee...

:mad:

Uhmmm...Allie came out of your womb, right?

:mad:

Who the F! do they think they are?

:mad:

I'll be back when I can comment without wusing the F-bomb every other word!

:mad:

[peglem]

I honestly wish they'd restrain her more when she gets crazy like that. When she took off her shirt- she has several huge bite marks on her upper arms where she bit herself. Here at home- she comes at me to be restrained. I'd rather take the bites myself (usually I can avoid it tho) then see her like that. Again, she seems very happy here at home. I wonder what set her off?

[Isabelle]

if their suggestion to take allie off risperdal was verbal count to nothing. tape any calls from them or demand written communication with full details on the "incident" that prompted the phone call. you need a paper trail.

[peglem]

I don't really need a paper trail- they cannot force me to medicate. I only share with them because I want to work w/ them for Allie...medication is totally up to me.

[Isabelle]

it was a bit hysterical of her to say that you have taken allie off her meds

[Anna-Banana]

I don't really need a paper trail- they cannot force me to medicate. I only share with them because I want to work w/ them for Allie...medication is totally up to me.

Personally, I don't think it's ANYONES' business if and when your kids take meds. Like you said though, "because I want to work with them." I can even see the school nurse asking, but the teacher? nah.

good luck, and have a great day!

[Kristen (ColeysMom)]

Yes I agree...obviously...this is your business and yours alone...well within reason that is, short of ODing your kid or something, it's a parents decision to be made with the Dr - PERIOD!

Which clearly there is no debate on that...but I'm just WAY annoyed that somehow they think it's their business to police, or something...

I mean I could understand them calling to say, FYI...Allie is way off. That's helpful. Maybe even, for their own knowledge to 'know her better' inquire about her current med situation (considering you alerted them to med changes), but beyond that it's WAY out of line! :mad:

Alright that's my vent on the whole thing!

As for what to do...of course you've made your decision about the meds, and I'm sure that any changes are going to be rough on her. With her limited communication skills and the strength of these meds, I would expect that there are going to be some pretty rough days as she 'adjusts.'

It's probably a good idea for her to, as you said, 'keep them in the process'...

On one hand it probably would be a good idea to ask them to take some 'extra' care with her while she goes through this...but I'd be REALLY nervous about giving them permission to 'restrain' her more often.

Is there something else that calms her when she gets so out of control? That's probably a stupid question...I'm sure you wouldn't endure the bites if there were...ugh!

Can you think of anything else they could do between allowing her to hurt herself (or someone else) and restraint?

:( Poor Allie!!!!! and you!

I just HATE how hard this is for you guys!!!!!

http://smileys.smileycentral.com/cat/11/11_2_104.gif

[peglem]

I withdrew her slowly from risperdal- over several months. She was chewing her tongue. "They" assure me this is not tardive dyskawhatever, but Allie can't stick out her tongue and she's not doing it off the risperdal. Anyway, i don't see this episode as a reaction to w/drawal- she did this stuff when she was on risperdal. I think, as I said, the Rspdl had a placebo effect on the staff at school- they really didn't notice anything different when she was going off it, and 2 or 3 weeks later: don't see it being the meds.

They have a little jacket at school with padding in the forearms. She usually chews on her forearms and this protects them. I wonder if that's why she was biting the upper arms. Stop one behavior: start another.

[Kristen (ColeysMom)]

I think she could still be 'adjusting' ... what about the increase in the lamictal...

I'm not suggesting that she's necessarily withdrawing or even reaching limits, just feeling things differently and not knowing how to manage it... course anything could be happening, she could be having a simple headache or a queezy stomach from it...ya know!

But, WOW! the tongue thing! Maybe, replacing...hmmmmmmmmm...

The jacket sounds pretty tame...have you guys talked about using it more? I think I'd feel pretty 'safe' with that idea...but I'd certainly monitor its use. If you do/did, I think I'd ask them to notify you of it's use so that you can....

No wait!

I could be jadded or whatever...but somehow in my mind I can see them over using it or something just so you 'sedate' her more for their benefit...

EEEK!

Can you send her to school with REALLY thick shirts for a while?

I dunno, what do you think...

[RathyKay]

I have for a long time thought that the risperdal had a placebo effect on her teachers. What does that say about the meds?
It's sad, but you're probably right. On the other hand, maybe it's not so much a placebo, as they feel *you* are actively "doing something" to solve the problem, even if it's not working, so they don't complain as much?
I honestly think her health has a lot more to do w/ behavior than any med we've ever tried.
I think this is true with a lot of kids. Expanding on "health" I would add constipation and yeast as being big factors in Tom's behavior. Oh.... and some foods. Three weeks ago, Tom told me someone "poured fish for me" at Sunday School.:eek: The only "fish" I could think of are goldfish crackers. He told me he ate them. We saw typical dairy reaction... hyperactivity, kicking the desk continuously at school, in addition to a nose bleed, extra snotty nose, and constipation. Ugh.

Anyway, I don't have any advice. (And you weren't really asking for any.) I'd trust your gut on what you think is working and what isn't. If you find her behavior much better at home without it, I'd definitely stay off of it. I vote for keeping things better at home over school. If it makes the school happier, tell them Lamictal is also an anxiety med and you are increasing it.

[AKF]

I think that lots of times "Oh, she didn't have her meds today" is an easy out for the school, rather than looking closely for the cause of the behavior. Granted, a child that needs meds and doesn't get them can be hard to handle and cause a lot of problems, but sometimes schools will use lack of meds as a way to not have to look any further for the cause of the disruption.

[tgrimes]

I think that lots of times "Oh, she didn't have her meds today" is an easy out for the school, rather than looking closely for the cause of the behavior. Granted, a child that needs meds and doesn't get them can be hard to handle and cause a lot of problems, but sometimes schools will use lack of meds as a way to not have to look any further for the cause of the disruption.

I think so too ... I hope they don't 'give up' on things just because just because they feel peg should 'do something'.

[milivica]

Peg, I just read this. I don't even know what to say. I feel just rotten for you. I've been thinking and thinking since the post I last read from you, and not getting the funding for RDI - are both consultants not state licensed? If both are not licensed, can you go to an out of state consultant like we do?

Hearing about kids hurt themselves and a whole lot of other things that Allie does and feels, and you go through with her, just breaks my heart. It's so stinkin wrong.

I can't say or not say, the RDI is going to 'fix' everything, but at least it will make it clear what is and is not autism, what is and is not co-occuring so you finally have a solid platform to help her. Also, I can't say RDI won't 'fix' everything - it very well could. I can't believe you managed to muster up the hope and get go to get the RDI going, then wham still you hit a wall. Also, that sort of 'conspiracy' feeling you had, about Allie being kept out of RDI, it's not at all far fetched to be honest. The program goes through great lengths now, so Joe Schmoe can't claim to know how to apply RDI and do it with you and your child, however, that also applies when Joe Schmoe is the parent of a child with autism. I dunno, I just been thinking and thinking about you and Allie since I read your last post. I was so convinced you were going to start and succeed and your lives would be forever transformed into everything you dreamed...not fancy cars and so on but those basic wonderful things like her having friends and sleep overs, ya know?

I have a 'new life' with Vince now, so does dh and finally even Carmen. I really haven't got much to post about 'autism' anymore, cause when your autistic child is continually progressing, there's nothing to worry or stress about. Growth takes time, he's finally growing - I'd feel weird posting nothing but progress, but that's pretty much all there is to post now. Must like you would with an nt toddler. There are ups and downs, but always, progress. He's still autistic sure, nothing is perfect or whatnot of course, but at least he can go sledding with other kids like he's been doing the last few days - around here that amounts to a miracle. And the only thing keeping me from really getting into the joy of it, is thinking about you and Allie and every parent and child with autism in the world, that totally deserves to be enjoying the same. Ya know? And how can I post about the good things, when I can't do it WITH everyone here? I do love and agree with that saying, I cannot be all I can be until you are all you can be. You are so stinkin smart, like I can't believe how you know your daughter, how you grasp autism so very well, I mean most of what I know about autism I had to learn about in RDI, you have this internal grasp of it. I can't explain it or put my finger on it, but you've got it, you get it, you're freakin smart about things that are more about intelligence than education, know what I mean?

I don't know even my point really, it's just very upsetting to hear what Allie goes through, and what you go through with her. I think it's a raw unfair deal, it makes me very sad and angry too. And even guilty feeling, cause it is long overdue that Allie does more enjoying and less hurting, you too.

[peglem]

Just got a call from the case worker. The other RDI conultant is not licensed in AZ either. Email from RDIconnect- update on scholarship fund. 2 scholarships were awarded. I haven't recieved notification so, I'm guessing that I'm not one of them. C'est la vie!

[Kristen (ColeysMom)]

:( :mad: :(

I'm sorry Pegs! Maybe you should sign up for the Christmas wish...I'll vote for you as many times as I can get away with it.

I'm sure we could get you the votes you need....

There has GOT to be other options...we just need to "think-think-think"

Is Allie a Pooh & Friends fan?

Or maybe a Pinky-Dinky-Do fan, in that case we just need to "think & think & think, and suddenly we'll know"

Please laugh!

[peglem]

Curious...my last notebook entry to the teacher before Christmas vacation, I said I was going to contact the neurologist about increasing Allie's mood stabilizer (her lamictal IS used as a mood stabilizer, but she's taking it for seizures). Well, I didn't do that...but Allie returned to school Monday and so far (hope its not too soon to tell) her teacher has been reporting good behavior- no tantrums. Has she really improved? Or has the teacher's perceptions changed?

I'm a bit worried too- Allie's older sister was just dx'd w/ strep yesterday and Allie is between zith cycles...hope it'll be okay. I haven't noticed any increased "streppy" behaviors so far, except she has been insisting on darkness in the house for the last couple of days. Goes back on Zith Friday.

[Kristen (ColeysMom)]

That's interesting!!! maybe a call over to the teacher to talk a bit more in detail. It certainly would be helpful to know who that lamictal is doing more for, ya know.

Aside from the darkness, would you describe her behavior as improved or status quo at home?

Light sensativity is a symptom of yeast overgrowth ???? But I guess it could also be from sensory stuff too...which obviously could be triggered by an infection...

I might bump up the s.boulardii though, just to cover the bases. UGH I hope you aren't in for a bumpy weekend.

[peglem]

Could be yeast. Too hard to sort out. She'll get her diflucan at the start of her zith cycle. I'm holding steady on the boulardii. The only thing worse than yeast is rapid die-off. Her behavior at home is about the same- but about the same means highly variable- she has really good days and some rough days- with me trying to figure out wtf is up!

[Kristen (ColeysMom)]

I hear you there!

I'm second guessing EVERYthing right now because his behavior is just so bad. I'm just SO tired of the constant negotiating over everything...and the subsequent screaming fits when he doesn't get what he wants or what he invisions.

He looks terrible so I know something is wrong, but I just can't sort out what it is. And to top it off that stupid pimple rash on his but is WAY out of control.

I hate the constant WTF! I just don't know if punishing him, or whatever is productive at times like this...GRRRRR!

Anyhoo...hopefully the meds will catch whatever is going on with the lights...let us know what the teacher says if you talk to her...Coley is better at school than at home, maybe Allie is doing better there, that'd be nice...