medication question ??

[Mayzoo]

Just curious if my daughter is caught in some new medical trend. She is barely on the spectrum...according to the test she tested on she scored 30-32 and 30 was the start of the spectrum. As you can tell by my siggie, she has other medical conditions.

Currently all her neurosurgeon is interested in treating is medicating her for autism. I have not mentioned autism related behaviors to him, nor have I requested any help with her autistic behavioral issues (actually I have never saught help for her autism from any of her doctors). The issue I wish to have him address is her pain related to her Chiari. He has been treating and medicating her for this pain (not narcotics or anything--topamax) for over two years, but this last visit it all change. She saw him at a University Hospital, and he referred her to a pedi and another Neurologist for seizure testing. The test was negative, but now every doctor she saw is solely focused on giving her anti-psychotic medication for her autism that they all doubted she had when they meet her. She makes fairly good eye contact, and is quite well behaved. They ALL questioned her diagnosis of autism, but once the test showed no seizures, they ALL are adamant she be medicated solely for autism. I have been asked literally a total of ten or more times if I would start her on medication. I am not anti-med for all autistic kids, just mine does not need it at this point. I am with her 24/7 so I should have an idea. She is home schooled, and my work is her right now. So I guess I feel if I can cope with her behaviors, and she is progressing in education and growing up, why the sudden push for meds?

So my question in the short version is, is there some new big push to medicate autistic children despite their parent’s adamancy that they do not wish to go this route?

[Mother's Heart]

not new, but yeah.
btdt

[wallyw1]

Hi,
From personal experience and also from being witness to the effects of medications on several of our friends' autistic children, I think that I would find another doctor(s) if this is what they have on their minds especially if you daughter is not a violent person. Short of finding another Dr, I think I would tell your Dr to take the meds and shove them up his ____.

Wally's Dad, Father to a 42 yr old nonverbal autistic who is a delight just the way he is

[Mayzoo]

not new, but yeah.
btdt

:D....sorry had to laugh at this answer 'cus it is so true!!

Okay, let me rephrase just a bit, I have worked in pharmacy for 20 years so I do know they have medicated for a long time, and have read up on how they use(d) autistic kids for testing new meds....so yeah :(.

I should say my declining medication has not been "polite" because they are minimizing and ignoring her pain in this approach...so my declining involed basically telling them:

"I will not turn my child in a person who can no longer complain about her pain becasue she is sedated, simply so her screams in pain for days on end no longer "bother me"!!"

And my most recent decline included stating I know exactly how they use autistic kids to test these meds on and I will not deprive her of her good days to gloss over the pain ridden days because her pain can be addressed properly.

[Mother's Heart]

when my son's neuro heard at his August check that he was starting kindergarten that we would be back for meds in a month. the beginning of my battle to resist meds for my son for the sake of other's comfort/convenience.

I'm not saying meds mightn't help him (his impulsiveness and aggression and distractability are significant) but I just can't give him something that might harm him in other ways to mask evidence of underlying problems that can possibly be addressed by non-med approaches...again, to make him fit into everybody else's mold. Sometimes meds help. But I for one can't do it for anything less than a compelling need...and if she and you neither one see a need, then I wouldn't go there. Maybe being up front with the docs....saying you are very reticent to do meds unless things get unmanageable. Medicating just because there is an Autism diagnosis is dumb, and medicating just because there is no evidence of seizures, also dumb.imho. btw: seizure activity is very frequently undetectable by the testing.

I'm kind of freaked out that they are so insistent on giving her 'autism medication'. Just what marvellous autism medication do they claim to have discovered? As far as I know there isn't one of those. I mean, she doesn't seem to have any compelling behaviours to remedy....no dire straits arising out of her extreme issues. ;) Are they just not thinking? or are they thinking they will help her focus more and voila`

[Mayzoo]

when my son's neuro heard at his August check that he was starting kindergarten that we would be back for meds in a month. the beginning of my battle to resist meds for my son for the sake of other's comfort/convenience.

I'm not saying meds mightn't help him (his impulsiveness and aggression and distractability are significant) but I just can't give him something that might harm him in other ways to mask evidence of underlying problems that can possibly be addressed by non-med approaches...again, to make him fit into everybody else's mold. Sometimes meds help. But I for one can't do it for anything less than a compelling need...and if she and you neither one see a need, then I wouldn't go there. Maybe being up front with the docs....saying you are very reticent to do meds unless things get unmanageable. Medicating just because there is an Autism diagnosis is dumb, and medicating just because there is no evidence of seizures, also dumb.imho. btw: seizure activity is very frequently undetectable by the testing.

I'm kind of freaked out that they are so insistent on giving her 'autism medication'. Just what marvellous autism medication do they claim to have discovered? As far as I know there isn't one of those. I mean, she doesn't seem to have any compelling behaviours to remedy....no dire straits arising out of her extreme issues. ;) Are they just not thinking? or are they thinking they will help her focus more and voila`

I posted above this too :D.

Their drug of choice is risperdal. I have been adamant and down right beligerant in my refusal of this route, because when my daughter is not in pain she IS a delight. She has her quirks, but I use home grown behavior modification for those :D.

I have never even discussed the quirks she does have with her docs :confused:. This doc is a specialist in her other neuro dxs. We dropped everything, and drove 17 hours straight to see him, because we were told they wanted to see her to change her meds since her pain had returned, apparently due to medication tolerance.

Yes, now I am looking for yet another doctor to treat her neuro dx that need to be monitored if not surgically addressed.

[Kristen (ColeysMom)]

I would talk to her ped about the blatent disrespect that you are recieving about your wishes and approach with your daughter.

Coley's neuro tried to push risperdal on us a few years ago...I was TOTALLY freaked about it...I mean that's a pretty serious drug! And I felt the same...his body was trying to tell us something and to stiffle that, to me seemed like a conflict to their hipocratic oath or something...

I called his ped, confused mostly, but was VERY happy with the response I got...mostly because his ped knew him and US and about how he reacted to meds, and all...so I didn't really need to say much more than, Dr. S is recommending risperdal...

Well his reaction was that risperdal is the new 'fad-drug' and in his opinion, without even looking at Coley or our family approach, that using it was getting out of hand and was NOT being thought through on a case by case basis carefully, but rather recklessly, like we hear about ridolan (sp)...

But then to consider Coley, well...he then dug up the name of a good colleague of his and we were on a WHOLE new course of treatment! And I'll add Coley's made tremendous gains since then.

I should also say, clearly every kid is different...but I agree, it's time for a new Dr, and if you can get the ped in your corner...well it sure worked for us!

Good luck, please let us know how everything works out!

[Mother's Heart]

So much time has passed that I actually forget: just what is it that Risperdol is supposed to do for Autistics? Why do they decide to give this?

[Mayzoo]

So much time has passed that I actually forget: just what is it that Risperdol is supposed to do for Autistics? Why do they decide to give this?


It was originally for schizophrenia or bipolarism. It is a sedative in autistic children, essentially sedating them so they do not exhibit behavioral problems.


The very technical mechanism of action is listed below for those that like the technical stuff (like me :D):

"As with other antipsychotics, the exact mechanism of action for risperidone is not fully understood. Therapeutic effects are thought to result from risperidone's combined antagonist activity at dopamine type 2 (D2) and serotonin type 2 (5HT2) receptors. In addition to having high affinity for these receptors, risperidone also has antagonist activity at α1 and α2-adrenergic and histaminergic (H1) receptors. It has low to moderate affinity for serotonin 5HT1C, 5HT1D, and 5HT1A receptors, weak affinity for dopamine D1 and haloperidol-sensitive sigma site receptors, and no affinity for cholinergic muscarinic or β-adrenergic receptors.[2,3]"

"In pediatric clinical trials, the most common adverse effects associated with risperidone were somnolence (in 67% of patients), fatigue (42%), increased appetite (49%), upper respiratory tract infection (34%), increased salivation (22%), constipation (21%), dry mouth (13%), dystonia, tremor, and Parkinsonian/extrapyramidal symptoms (8-12% each), dizziness (9%), tachycardia and dyskinesia (7% each), confusion and weight gain (5% each).[2]"


Hope that answered the question......

[Keggy]

Mayzoo I am confused about something you said. it was this "The test was negative, but now every doctor she saw is solely focused on giving her anti-psychotic medication for her autism that they all doubted she had when they meet her." Do you mean they doubted her having autism when they first met her?
IF thats the case thats not surprising. We went to a few nsg's and they were clueless about the connection about autism and chiari.
As for your question about a new push, yes I think there is a new push in all areas, not just autism. Its those drug companies need to make more bucks. And doctors are taught, pushed and bribed to prescribe them.
I agree with you not to give her any anti-psychotics, if she doesn't need them don't do it!! I have yet to see anybody get any real help from them in the long run.
As for her pain though, uggh.. pain meds do other things to the body as well. Is she having neck pain from the surgery or headaches?
I don't know where you are but my neurosurgeon was more autism aware when we saw him (ten years ago). Even given that, unless there is something wrong, like headache, I don't see the need for a nsg. If it is neck pain it is scar tissue. Sigh.. must go now, but I would like to hear which or what it is that hurts.

[Mayzoo]

Mayzoo I am confused about something you said. it was this "The test was negative, but now every doctor she saw is solely focused on giving her anti-psychotic medication for her autism that they all doubted she had when they meet her." Do you mean they doubted her having autism when they first met her?
IF thats the case thats not surprising. We went to a few nsg's and they were clueless about the connection about autism and chiari.
As for your question about a new push, yes I think there is a new push in all areas, not just autism. Its those drug companies need to make more bucks. And doctors are taught, pushed and bribed to prescribe them.
I agree with you not to give her any anti-psychotics, if she doesn't need them don't do it!! I have yet to see anybody get any real help from them in the long run.
As for her pain though, uggh.. pain meds do other things to the body as well. Is she having neck pain from the surgery or headaches?
I don't know where you are but my neurosurgeon was more autism aware when we saw him (ten years ago). Even given that, unless there is something wrong, like headache, I don't see the need for a nsg. If it is neck pain it is scar tissue. Sigh.. must go now, but I would like to hear which or what it is that hurts.

Her pain complaints are her head, neck and legs. She has not been decompressed mainly because her NSG does not feel she needs to be right now. He just wants to follow her for now. Thirteen mm distention at 07 MRI, not sure the number on the '08 yet. She sees a NSG that seems to understand the link between the two, and at her appt before this one he felt her "autism was quite likely secondary to her chiari and would improve some with decompession when we got to that." His name is Doc Frim and he is on the WACM site as a "specialist" in her three major conditions.

The docs were skeptical that was in fact autistic, since she made fairly good eye contact, and she was very well behaved (did not have too many of her typical issues in their offices). So they wanted to know who and how she was diagnosed. Then when the EEG came back negative, they just wanted to medicate medicate medicate.....*sigh*

[Keggy]

Thirteen mm distention at 07 MRI,


This is why she is in pain!! What are they waiting for? That is a huge herniation. Even if they are confident that she has sufficent flow are they not worried about anything else?

Personally, I am not a fan of Frimm. I know all about his rep, and his "wonderful bedside manner". I have spoken to quite a few of his patients parents when I ran the autism chiari group. There is one parent in particular I would love for you to talk to if I can find her email addy. He must have become a specialist in autism recently though, thats news to me.

I guess the plan is to medicate the pain out of her for a period of years until she develops more symptoms? Like drop attacks, choking or seizures? Sorry, but I am sick... sick... sick of these doctors.

Our kids could have normal lives if they got treated early, but instead there are so many doctors that take that wait and see approach, like it is going to cure itself. I don't give a crap what anybody says about this, this surgery helped my daughter tremendously, and may have saved her life. Did he at least warn you about protecting her head? She should not go on carnival rides or dive in the pool. Getting hit in the head or neck could seriously injure her or worse.

My dd's herniation was at 12 when she had her surgery, really bad compression too, couldn't tell from the prior testing that she had no flow on her right side, tonsil as thick and long as the surgeons thumb.

[Isabelle]

mayzoo, "autism" is not a psychiatric condition per se, so you know the docs are just selling a drug and they (doctor/s) will be rewarded.
risperdal almost killed my son and after zyprexa he lost all his personality and creativity. caused him to head bang, SIB and to be aggressive....drug free for 2 y 1/2 he is a bit better not 100% himself.
risperdal causes serious damage to the mitochondria, nervous system, etc. you know that...it's not worth it.

[Mayzoo]

I would not medicate sweetie for autism unless she was a serious danger to herself or our family, as it is she is compassionate, caring and giving the majority of the time. She has her behavioral moments, but nothing that I cannot help her deal with in other more productive manners for her long term future in dealing with her autism....like expressing her frustration in productive manners, and expressing anger appropriately. Neither frustration or anger are a huge issue, but to just medicate them away when they do not pose a danger is a disservice to her in my opinion....so I WILL NOT be medicating her. It was never even considered for a second. I was furious, to be quite honest, that they even broached this subject as if it was a forgone conclusion that this was the best course for our family, when ALL the recommending docs had just meet us, and did not ask a single question about our family life, OUR concerns, her strengths or weaknesses behaviorally, or pay heed to our preference/opinion in this matter--their minds were made up before they walked in the door to even meet us.......but the "good" news is I got a survey from the hospital today asking how they did during our stay there <evil grin coming on> sorry I am still not a happy mom right now.

I know docs get kickbacks for medicating, and my recent (last few days) research has shown that the "studies" they did previous to now, have been speculated to be insufficient clinical trials so they wish to place kids on these meds now as a new study group from what I can tell. I have done a lot of research on the type of trial that was done for this medication, and I am simply not impressed by the slip shod approach that was taken (not that I was surprised *sigh*).

Keggy, I am working on hubby about the surgery. We are naturally both petrified, but he wants to wait and wait, while I think the time is right now. He has done virtually no research on this, I am the researcher and the one who medically oriented.....but he is petrified to possibly lose his lose his little girl. We lost a child already to something else, and he just cannot seem to bear the idea of surgery for her, but I am working on him and this issue. He is deluding himself that she will outgrow this someday "maybe". The NSG saying to continue to wait did not help any at all. If you find that email addy let me know please.

Thank you everyone for taking the time to read and post on this....it has helped me immeasurably to simply know I am not alone in this battle.

[Kristen (ColeysMom)]

May,

I'm sure I don't know all that you've been through, and likely what I'm feeling right now is just a fraction of what you and your DH have...but I feel an obligation to just say this...there is a good chance you've said this already, to yourself, perhaps even to your husband...but I have to type this 'just in case'...

Scary things even horrifying things happen - period. There is no way around that.

I was terrified to have a second child because of all that we went through with Coley early on...

You know what, things work out for the best. Trust that. Audrey was not exactly an accident, but not exactly planned...she turned out to be the very best thing that ever happened to Coley...never expected that!

Your daughter needs this surgery...do it...whatever happens, will be for the best...

that sounds terrible..I don't mean it that way...I mean, have faith...go forward, do what needs to be done & don't be afraid...we are here...I'm not an expert on this particular thing, but I think I can identify with the fear...tell your husband this is NOT about him, it's about sweetie...come here, camp out, we will hold his hand through it...she needs this chance, she deserves it...

Now I'll go back to minding my own business...

[[[hugs]]]]

[Keggy]

I completely understand. i was a basket case myself.