Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

Lois, I'm so sorry; I have been there. Have you already tried Xanax and Clonidine? It seems like you have already tried just about everything.

Karac is finally off of all meds and hasn't been aggressive in a year, but day before yesterday he had some strange behavior after his bath. He threw his underware in the toilet and then his towel; he said his eyes hurt. I asked him if he wantd an aspirin and he said yes, but when I gave it to him, he spit it out along with his water. He asked for a hot dog; I made him one, and he tore it to pieces. Finally, I said go wrap in your blanket; he did, and I turned on some classical music and in 15 minutes he was happy and back to normal.

I don't have any idea what caused that behavior. Has JJ ever acted like that? Pat K

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Lois,

I've also been there - (hugs!). This is probably a long shot, but

could the b12 be contributing to the problem?

Mb12 was fabulous for Tom when we started it, but he developed bouts

of aggression after probably 4 mo. on it. Then, it seemed like most

of the stuff we tried was good, and then brought on aggression

(supplements and meds). It took over a year to figure out the b12

was contributing to the problem. But after taking him off it (which

didn't totally fix the problem) and putting him back on it twice,

the b12 definitely kicked up meltdowns/aggression.

It sounds like you've tried everything, so this may not help at

all. But I sure do wish someone had told me the b12 could turn bad

on us after months of great stuff. I didn't suspect the b12 for

almost a year!

HTH,

Sally

>

> Hi all,

> J has been on zapraxa for about 2-3 weeks now and while it has

helped with his sleep it is starting to make him mean an hour after

he takes it. (Hitting at me). He is also STILL VERY wound up and

acts like he can't sit still or stop OCDing.

> Its like " Damed if I do or Damed if I don't with the meds. I got

him off resperdal and we went into mania real bad-that is why I

tried the zpraxa. It does make him eat more but J is 5ft10in. tall

and only weighs 115 pounds.

> He is taking vitiamins and B-12 shots. Its a mess. I am going to

have to tell the Dr. about the meaness again. ZEESH! What to do? Lois

> Lois Noland

> Always in search for the " cure "

>

>

>

>

> Lois Noland

>

> I don't give in

> I don't give up

> And I don't take no for an answer

> Always looking for the " Cure "

>

>

>

>

>

> I don't give in

> I don't give up

> And I don't take NO for an answer.

>

> If God Brings you to it,

> He will Bring you though it.

>

[Guest guest]

Have you thought about taking him off the b-12 shots altogether? They cause hyperactivity. I think I would try that. Also when do you give him the shots. What about melatonin? What about ambien? Just some thoughts.

alena Resperdal.now Zapraxa -JJ UpdateTo: autism-awareness-action , AutismMeds , AutismBehaviorProblems , MoMAMissionPossible , landAutismRecoveryCoalition , abmd > Hi all,> J has been on zapraxa for about 2-3 weeks now and while it has > helped with his sleep it is starting to make him mean an hour > after he takes it. (Hitting at me). He is also STILL VERY wound > up and acts like he can't sit still or stop OCDing.> Its like "Damed if I do or Damed if I don't with the meds. I > got him off resperdal and we went into mania real bad-that is > why I tried the zpraxa. It does make him eat more but J is > 5ft10in. tall and only weighs 115 pounds. > He is taking vitiamins and B-12 shots. Its a mess. I am going > to have to tell the Dr. about the meaness again. ZEESH! What to > do? Lois> Lois Noland > Always in search for the "cure"> > > > > Lois Noland> > I don't give in> I don't give up> And I don't take no for an answer> Always looking for the "Cure"> > > > > > I don't give in> I don't give up> And I don't take NO for an answer.> > If God Brings you to it,> He will Bring you though it.>

[Guest guest]

No, Karac's day wasn't too good. He was fine all morning; he went to a two and a half hour movie with the group from the rec. They said he was not a problem and didn't even have to eat his way through the movie, but in the afternoon when we got home he didn't want to do anything. He said his stomach hurt. He went downstairs to get a drink of water, and the next thing I heard was he and my husband screaming at each other. I came down and made Karac go back upstairs. When we got back upstairs he started toward me. I grabbed the big teddybear and put it between us and managed to push him on to the bed. I turned on the classical station and left the room. About 20 minutes later I went back upstairs and he was lying calmly on his pallet. I asked him if he was ok and he said yes. I asked him if he wanted to be alone and he said yes. About 10 minutes later he came down and wanted me to go upstairs with him.

He had music therapy at 5:30; so I took him home. After about 15 minutes, the therapist came down and said she was leaving; every time she played and sang Karac started sort of screaming saying that his stomach hurt. I was scared because I don't know how to control Karac at his house. Karac is very good in the car and he said he wanted French fries; so we went to get French fries. I called his mother to alert her to what had happened. I took him back to his house to eat his chicken and French fries; he was fine when I left, but his younger brother was screaming and throwing a tantrum, much worse than Karac has ever done!!

Karac's family just returned from Colorado last Sunday, and Monday is when Karac's strange behavior started. I'm thinking he is having some trouble adjusting. What do you think? Pat K ************************************** See what's free at http://www.aol.com.

[Guest guest]

Alena,

J was switched from the menthol B-12 to Hydoxey B-12 because of Hypreactivity. I haen't seen one drug or vitiamin slow J down. He can't take Melationin. It makes him mean too. Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

Pat,

Yes-You name it and J has done it! Is he acting ok now? Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

The hydroxy-b12 still causes hyperactivity bc it's still a vitamin b the only difference is that there will be a water molecule (H2O) attached to one of the phenolic rings instead of a methyl group (CH3). Can I ask why he's taking the hydroxy b12 shot? THe premise of the methylcobalamine is that for children who do not produce glutathione the methyl group from the vitamin b12 is incorporated into the cycle that produces glutathione. Does he produce glutathione? DOrian doesn't, but after giving him the shots his glutathione did not increase. Therefore I quit the shots bc his mutation is at a different part of the pathway. Anyhow, I can honestly tell you that our DAN! dr Dr. Jill recommends that if there is any aggression whatsoever that they be taken off of the folinic acid and the b12 supplements whether oral or shots.

I also had another thought in my head. Have you heard of the drug for Restless Leg Syndrome ( I don't know about the syndrome) but the drug Lunesta or something is a calmer. THe first pill is suppossed to work. If it doesn't work then you don't have to give him anymore, but it controls the muscles.

Have you tried straight muscle relaxers? Like soma or flexiril. Those are really old drugs that have a long history on the market. Those may be worth a try as well. That's what they give in the institutions to calm someone down. Anyhow, I'm very sorry for what's going on, but I really hope it gets better I know you've (and especially him) have been struggling for a long time and it breaks my heart to hear it!

With good thoughts

alena Re: Resperdal.now Zapraxa -JJ Update> > >

[Guest guest]

Hi Lois. I've been a member here a while and have been reading with

interest your threads about JJ. I wanted to post about my son and

let you know that he was also on Risperdal for over a year and it

started out well but then he started having breakthrough behaviors

as I call it where he'd get aggressive and start hitting again and

get agitated and just miserable, along with the nasty side effects

of 25 plus pounds of extra weight, excess saliva, etc.... Anyway,

we slowly weaned and stopped the Risperdal and he lost most of the

weight. He's now on a beta blocker called Propranolol (name brand:

Inderal) and now takes 20mg 2X/day. It has definitely taken some of

the " wind out of his sails. " He is also on a mood stabilizer/anti-

convulsant called Trileptal. The Trileptal, in my opinion isn't as

strong/effective as the Risperdal; however, the negative side

effects are nowhere near that of the Risperdal either! And it

doesn't change his personality. All I want from medication anyway

is to calm him down, not change him because his personality is

great! Anyway, I give the Trileptal twice a day too. This

combination has been working well so far and I've recently added

some over the counter " 5-HTP " to boost his serotonin and that has

definitely made him happier! So YAY!!!

Well, I just wanted to give you some food for thought as my son, who

will be only 9 in September, has some severe issues. He's non-

verbal, easily frustrated, very much in his own world, stims all day

long if you let him, very OCD'ish, hates anything academic-based,

can meltdown at the drop of a hat, self-injurious behaviors, etc. I

call him my " jekyl-hyde kid " , but I of course love him like no other

and he and I are attached to the hip and best friends!! When he's

feeling good though, he's the sweetest, most loving little boy who

loves to laugh, be hugged and loved and have fun!!

Tammy

>

> Hi all,

> J has been on zapraxa for about 2-3 weeks now and while it has

helped with his sleep it is starting to make him mean an hour after

he takes it. (Hitting at me). He is also STILL VERY wound up and

acts like he can't sit still or stop OCDing... I am going to have to

tell the Dr. about the meaness again. ZEESH! What to do?

[Guest guest]

Karac has had a better day. He did great at gymnastics, and I took him to Luby's for lunch and he couldn't have been better. Thanks for asking. Pat K************************************** See what's free at http://www.aol.com.

[Guest guest]

Sally,

Yes! I agree with you. J was just switched to "Hydoxey" B-12. I am starting folic acid with it. do you use folic acid? I will keep you updated on the Hydoxey B-12. Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

Tammy,

Thanks so much for the information! BOY! Does he sound like a "Younger" JJ! haha! J is the sweetest boy too when he is in a good mood. I will take this information to the Dr. next week when I see him. I will keep you posted. Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

Pat,

How is karac doing now? I hope better. Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

Alena,

Dr. Brenner says the Hajoxey doesan't make them as hypr as the menthol. I hate to try muscle relaxers..........They made me feel horriable when I took them for my back. Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

Lois,

Unfortunately, hydroxy b12 is also a problem for us (even though his

genetics per Yasko show that he needs it and should be able to handle

it). We really can't do folic/folinic/folacal either, again, although

his genetics show he should be fine.

We " seem " doing be doing well with rilutek right now (it blocks the

production of glutamate). His DAN suggested it and it is an rx. BUT,

it's only been a week and a half, and we've seen things turn on us too

many times to think we've found the answer :-/!

Blessings to you with all this. I think these kids with aggression

issues are just SO sensitive to everything and their metabolism seems

to often do the opposite of what one would think.

Keep us posted,

Sally

>

> Sally,

> Yes! I agree with you. J was just switched to " Hydoxey " B-12. I am

starting folic acid with it. do you use folic acid? I will keep you

updated on the Hydoxey B-12. Lois

> Re: Resperdal.now Zapraxa -JJ Update

>

[Guest guest]

Missy, that is so true!! I hope you had a good day too. Pat K************************************** See what's free at http://www.aol.com.

[Guest guest]

Wow, maybe I need to give Karac some Folic acid. I noticed that you give JJ 20mg. Pat K************************************** See what's free at http://www.aol.com.

[Guest guest]

Pat..I am so glad karac had a good day...that means you had a good day also..lol..we are so closely tied to these kids.

Missy

Re: Resperdal.now Zapraxa -JJ Update

Karac has had a better day. He did great at gymnastics, and I took him to Luby's for lunch and he couldn't have been better. Thanks for asking. Pat K**************************************See what's free at http://www.aol.com.

[Guest guest]

Glad to hear that Pat! This is J's second day on Folic acid.............It makes him REALLY wound up when he first takes it then he has been saying more words the last 2 days. Hmmmmmmmmmmmmmmmmm? Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

I have never heard of those medicines. DOrian isn't aggressive on the risperdal, (thank god he's not bc it hurts to hear all of these stories) but they say he's becoming insulin resistant from the risperdal. He's 4 and is 50 pounds now. I will ask my autism dr about these medicines that you mentioned. I think it's a great idea.

alena Re: Resperdal.now Zapraxa -JJ UpdateTo: AutismBehaviorProblems > Hi Lois. I've been a member here a while and have been reading > with > interest your threads about JJ. I wanted to post about my son > and > let you know that he was also on Risperdal for over a year and > it > started out well but then he started having breakthrough > behaviors > as I call it where he'd get aggressive and start hitting again > and > get agitated and just miserable, along with the nasty side > effects > of 25 plus pounds of extra weight, excess saliva, etc.... > Anyway, > we slowly weaned and stopped the Risperdal and he lost most of > the > weight. He's now on a beta blocker called Propranolol (name > brand: > Inderal) and now takes 20mg 2X/day. It has definitely taken > some of > the "wind out of his sails." He is also on a mood > stabilizer/anti-> convulsant called Trileptal. The Trileptal, in my opinion isn't > as > strong/effective as the Risperdal; however, the negative side > effects are nowhere near that of the Risperdal either! And it > doesn't change his personality. All I want from medication > anyway > is to calm him down, not change him because his personality is > great! Anyway, I give the Trileptal twice a day too. This > combination has been working well so far and I've recently added > some over the counter "5-HTP" to boost his serotonin and that > has > definitely made him happier! So YAY!!!> > Well, I just wanted to give you some food for thought as my son, > who > will be only 9 in September, has some severe issues. He's non-> verbal, easily frustrated, very much in his own world, stims all > day > long if you let him, very OCD'ish, hates anything academic-> based, > can meltdown at the drop of a hat, self-injurious behaviors, > etc. I > call him my "jekyl-hyde kid", but I of course love him like no > other > and he and I are attached to the hip and best friends!! When > he's > feeling good though, he's the sweetest, most loving little boy > who > loves to laugh, be hugged and loved and have fun!! > > Tammy> > > >> > Hi all,> > J has been on zapraxa for about 2-3 weeks now and while it > has > helped with his sleep it is starting to make him mean an hour > after > he takes it. (Hitting at me). He is also STILL VERY wound up and > acts like he can't sit still or stop OCDing... I am going to > have to > tell the Dr. about the meaness again. ZEESH! What to do?> > >

[Guest guest]

I'm sorry Lois, but I'd have to totally disagree it's not the hydroxy or the methyl group it's the vitamin itself. Especially if folinic acid is being used (some people confuse this with folic acid, but it's actually folinic acid). Folinic acid itself can cause aggressive behaviors. I agree with one of the other posts I'd honestly take him off of the b12 alltogether then let it cycle out of his system then start him on it again and see if the aggression gets worse. Dr. Jill is the leading researcher on b12 besides dr. neubrander and she totally insists that if there are any aggressive behaviors that the b12 be dropped for awhile. These supplements interact with medicine that these kids are taking. This could be a problem as well, bc you say that he gets aggressive after he takes his medicine. But you know him and I don't, so it's definitely your choice and I don't want to influence you one way or the other. And unfortunately all of the medicines you've tried makes it difficult to trust any other medicine. To me I would probably take him to a medication specialist, wean him off of EVERY supplement and medication then start all over. Sometimes I think our kids are over medicated as is. Also, perhaps going through all of these medicines could cause some withdrawal symptoms as well. Or he may just not react well with different medications. Anyhow, I'm very sorry that you are experiencing this. I don't know what you are going through, bc I haven't experienced it, but I do pray that it gets better.

alena Re: Resperdal.now Zapraxa -JJ Update> > >

[Guest guest]

Sally,

What is rilutek? Do you get it thru a Dr.? And what does it help with? Thanks! Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

Pat,

No- It is a 1mg pill. I found out today NOT to give J the folic acid pill when he gets the B-12 shot together..........He was a VER hypr-"hardheaded" boy today. The past couple of days I was giving him the folic acid about 3-4pm. I think it is to much for him to take both together. Lois

Re: Resperdal.now Zapraxa -JJ Update

[Guest guest]

Alena,

We did take J off the B-12 shot (Menthol) for awhile. That is when Dr. Brenner tried the Hydoxey B-12. The folic acid that J is taking is a scrip that Dr. Brenner wrote for J.

I WISH we did have a Medication Specialist around here.

J has a peradoxl effect to most anything he has taken. When we took him off the resperdal he got mania real bad............its a mess. Lois

Re: Resperdal.now Zapraxa -JJ Update