Risperadal

[melanie]

Ok I need some help and I know that some of us arent fans on meds and neither am I but ..My question is has anyone had success on risperadal? If you have please tell me how much you were using for your child and if it worked right away or took time please I just need some insite\

 

Thanks Melanie

[NancyD]

Hi Melanie,

 

As much as I have always hated using meds, Risperdal is the only one that has helped my daughter for years. We used it mostly for rages but it also helped with tics...until she turned 11. By age 7 we had already learned that she had PANDAS and we put her on penicillin, in addition to the Risperdal, and that stopped the rages right away.

 

I found that .5mg was the optimal dose, even after being on it for years. Occasionally it wore off and rather than up the dose, which did not help, it was better to take her off it slowly, get it out of her system, and then reintroduce it very slowly. Sometimes we got only 1 year out of a lifespan, other times 2-3 years, but it always started working right away once we had her at .5mg 2x daily.

 

The only side effect for us was weight gain (about 7 pounds) which she actually needed until she was pre-pubescent. We checked liver and prolactin levels regularly. Prolactin was high at times, but we really don't know what effect it has. We never saw a problem with TD or anything else. It really helped to calm her anxiety, minimize her hyperactivity, even out her moods, and eliminate the tics until her strep antibodies soared to 3000 at age 12. By then, nothing helped -- not the dietary interventions, supplements, Risperdal, or even the penicillin. The rages were horrible and she went from one tic to another.

 

Last year we did a 3-month trial of Riluzole for the OCD. NIH is having success with it on kids who do not do well with psychiatric meds. It's a glutimate blocker that is commonly used with ALS patients. We saw no change whatsoever and when we started to take her off it very slowly, it caused an overnight onset of really bad vocaliztions and non-stop motor movements. It was very scary and debilitating for her. She was angry all the time, very depressed, and her grades took a nosedive. Nothing helped (she has never had success with any other meds) until we started a monthly infusion of IVig. After 3 months the tics were 95% gone, her moods were completely stable, no rages, and her grades improved to mostly As.

 

In addition to the monthly Ivig infusions, the other thing that has helped enormously is daily horseback riding, which she absolutely loves. I am happy to say that for the first time in 10 years, she is completely free of the Risperdal and I have seen no change whatsoever. She must continue to take daily penicillin and her supplements and vitamins (Omega 3 helps) and I try to keep her diet free of dye and additives. I find both dye and additives (particularly dyes) exacerbate her tics. Yeast overgrowth from the penicillin can also make the tics worse. I would put her on a yeast-free diet if I could, but after being gluten, casein, and soy free from age 3-8, there was no way I could get away with a yeast-free diet now. I just try and give her as many organic fruits and vegetables as I can and minimize the carbs. Unfortunately, her body is very reactive to certain vitamins and supplements -- she can't take b12, d, and most probiotics (bifido factor is the only one she seems to tolerate). I also keep our home and grounds toxin free.

 

So for us, Risperdal gave us a more manageable life for many years!

 

Nancy

[myrose]

I know every situation is different and I am in no way judging or trying to scare anyone but my sisters friends cousin died suddenly after being on this med for 2 years.

I would also like to refer you to Cheri's post in regards to the findings and also sudden deaths when using those meds.

 

Again.....I am not judging or trying to scare you but just wanted to make sure you were aware in case you are not.

[melanie]

Hi Melanie,

 

As much as I have always hated using meds, Risperdal is the only one that has helped my daughter for years. We used it mostly for rages but it also helped with tics...until she turned 11. By age 7 we had already learned that she had PANDAS and we put her on penicillin, in addition to the Risperdal, and that stopped the rages right away.

 

I found that .5mg was the optimal dose, even after being on it for years. Occasionally it wore off and rather than up the dose, which did not help, it was better to take her off it slowly, get it out of her system, and then reintroduce it very slowly. Sometimes we got only 1 year out of a lifespan, other times 2-3 years, but it always started working right away once we had her at .5mg 2x daily.

 

The only side effect for us was weight gain (about 7 pounds) which she actually needed until she was pre-pubescent. We checked liver and prolactin levels regularly. Prolactin was high at times, but we really don't know what effect it has. We never saw a problem with TD or anything else. It really helped to calm her anxiety, minimize her hyperactivity, even out her moods, and eliminate the tics until her strep antibodies soared to 3000 at age 12. By then, nothing helped -- not the dietary interventions, supplements, Risperdal, or even the penicillin. The rages were horrible and she went from one tic to another.

 

Last year we did a 3-month trial of Riluzole for the OCD. NIH is having success with it on kids who do not do well with psychiatric meds. It's a glutimate blocker that is commonly used with ALS patients. We saw no change whatsoever and when we started to take her off it very slowly, it caused an overnight onset of really bad vocaliztions and non-stop motor movements. It was very scary and debilitating for her. She was angry all the time, very depressed, and her grades took a nosedive. Nothing helped (she has never had success with any other meds) until we started a monthly infusion of IVig. After 3 months the tics were 95% gone, her moods were completely stable, no rages, and her grades improved to mostly As.

 

In addition to the monthly Ivig infusions, the other thing that has helped enormously is daily horseback riding, which she absolutely loves. I am happy to say that for the first time in 10 years, she is completely free of the Risperdal and I have seen no change whatsoever. She must continue to take daily penicillin and her supplements and vitamins (Omega 3 helps) and I try to keep her diet free of dye and additives. I find both dye and additives (particularly dyes) exacerbate her tics. Yeast overgrowth from the penicillin can also make the tics worse. I would put her on a yeast-free diet if I could, but after being gluten, casein, and soy free from age 3-8, there was no way I could get away with a yeast-free diet now. I just try and give her as many organic fruits and vegetables as I can and minimize the carbs. Unfortunately, her body is very reactive to certain vitamins and supplements -- she can't take b12, d, and most probiotics (bifido factor is the only one she seems to tolerate). I also keep our home and grounds toxin free.

 

So for us, Risperdal gave us a more manageable life for many years!

 

Nancy

 

Hi the issue is dannys 15 and the ivig is probably not going to work the risperadal worked amazing the first week .25 x2 day then boom nothing I know I said this before but i dont get it .Is that what you mean

wean him off and start again? He was a little sick when he first started oh for goodness sakes I dont get this I have also tried supps hes also very sensitive to so many of them he was allegy tested and does have allergys to several foods which we try to avoid Hes 15 so its not perfect hanks ill write more later please answer if anyone understands this med melanie

[faith]

Please forgive me, but just reading the last two posts regarding the Respiradol, it just boosts my own theory that meds may work for some, but I am having a feeling, and I've said this before, is that using these type drugs for our kids and whatever their issues is only a temporary fix, and it seems that somehow eventually the drug does not seem to work as it did at first. (some will go on to layer med after med) But in the end, I am of the bad feeling that the problems only get worse and could very well be due to the drugs, even tho they may have provided some periods of relief in the beginning. In other words, I think that starting on the drug route may make things worse in the long term, maybe not at first, but somewhere down the line. This is just my observation. I also seem to get the impression that those adults here (parents with ts included) that have never been on meds have fared pretty well in the long run, with their tics and issues being minor.

Just my two bits.

 

Faith

[Chemar]

hi

increased prolactin causes breast development

this can be a VERY embarrassing side effect of this class of drugs when used in boys!!!

 

 

that is the mild side

 

the FDA has a black box warning for Risperadal and it has the potential to cause diabetes

 

plus, as myrose mentioned, we now have this alarming report on sudden death, possibly cardiac related, in youths on some of these meds

 

there was a boy in my son's class who nearly died on Risperadal after horrendous side effects

 

boys may be at greater risk than girls when it comes to some of these side effects

 

 

 

if you feel you need to use it, miminum dose possible would be wisest IMO

[CSP]

mel,

 

My son took the risperdal for about 6 months. It took about 3 weeks to see any help, but my son was screaming at that time. It then worked about 75% on the tics. We weaned him off for his summer vacation and it gave him dizzy spells for about 5 weeks. The only side effect was sleepiness for him. I do believe just like the vits. for my son is, vit. and meds work for a time then don't seem to work. It did help clear my head during a very very bad time for him. I would say only use them if all else has failed and it is the last hope you have of calming them down.

 

Goog luck and remember God does work through medication too.

 

CP

[melanie]

mel,

 

My son took the risperdal for about 6 months. It took about 3 weeks to see any help, but my son was screaming at that time. It then worked about 75% on the tics. We weaned him off for his summer vacation and it gave him dizzy spells for about 5 weeks. The only side effect was sleepiness for him. I do believe just like the vits. for my son is, vit. and meds work for a time then don't seem to work. It did help clear my head during a very very bad time for him. I would say only use them if all else has failed and it is the last hope you have of calming them down.

 

Goog luck and remember God does work through medication too.

 

CP

 

Thank you for the insite I have read all and I mean all of the side effects and they do scare the heck out of me but I am dealing with a 15 yr old boy who basically cant leave the house ,school is a nightmare most of the time the whole year has been a complete nightmare for him and our family We have tried every natural option I sometimes feel so overwhelmed He was in Columbia Presp for a seizure study looked at by 5 Neurologists I have tried everything suggested by his DAN dr for years Its just not getting better so This hopefully isnt my last resort Im thinking If this doesnt work than what This was always the last resort CP how much was your child taking ? Did you see any results early?

 

Thanks to everyone melanie

[CSP]

mel,

 

The best thing I can say about risperdal is it really helped more then the dr. even said it would. I think it was .5mg I can't remember that was 2/3 years ago.

 

My son was 12yo at the time so I understand how you must feel with a 15yo. My son is 15yo now and his attitude can be a bear sometimes so I can see why you and he may want the peace.

 

Again good luck,

CP

[Chemar]

Melanie

I know I likely sound like I harp on about the side effects ....I am not just "anti-med" with no recognition that they do help people as well.

 

My position just comes from being at that point of desperation too and it was in fact my son, then 11, who asked to be allowed to try meds.

For us we had meds causing side effects and not much help, beyond the initial phase. when the side effects started, all the docs would do is to try a new med or add on another med to try to deal with the side effects. with more side effects..........

 

it took a year of going round in circles with meds to realize that for us they were not working worth the side effects they were causing. as many of you know, my son nearly died when they finally put him on zyprexa and it was the final trial at his wellbeing's expense.

 

it wasnt till he was titrated off the meds that we started seeing the full benefits of the diet, supps, acupuncture and transdermal biofeedback resonance therapy he was already getting.

 

I am honestly not trying to suggest that there are not times when meds are needed, nor deny that they do work very well for some people! It's just for some the effectsthey have can be serious. And I dont feel the warnings are clearly given by many attending physicians/pharmacies etc who tend to downplay them IMO

 

Ionly wish I had had someone harping at me to look deeper into the "rare" side effects and be fully informed on potential dangers before agreeing to some of the meds they tried my son on.

 

 

but

as others here have already remarked, this med had a time of helping their kids. and seemingly without bad side effects.

I hope that is the case for your child too.