Re: another update on my son

[Guest guest]

I don't understand why the doctor won't take your son off the Strattera when it is not helping and is probably causing the aggression. Pat K************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

, I'm so sorry to hear of your struggles, and your son's. I would seriously get another doctor - or at least a second opinion. You're in crisis mode, and your doctor doesn't seem to think that the medication could be causing it? Adding in another medication into the mix when you're not sure now what he's having a reaction to - then you'll never figure it out. Seriously, enough is enough. I'd be doctor shopping. We got a wonderful psychiatric referral from the psychologist who dx'd my son - and he was highly recommended by the school district as being spot on with his reports and dx. Can you ask around for a better referral? Mariemlwpdb wrote: Hi all, I haven't written for awhile, cause alot has been going on. I think when I last wrote was last week when my son was at the Rescue Crisis Center. He was released last Sunday. Well, since then, he has since been taken back to the Rescue Crisis Center. He started beating me up again this past Sunday morning and the police came and took him to Rescue. He couldn't stay there because they were full. He went to another place that is a step-down facility for children just released from Rescue. He will come home tomorrow.He had a doctor appointment yesterday and the doctor still won't take him off of the Strattera and Geodon. She increased the Geodon back to 180mg a day (it was reduced to 120mg when he went to

Rescue on July 5-8). She wants to add Depakote to his medicine cocktail. I am not sure about it. I can't remember if anyone here has used Depakote, or used it in combination with Geodon, Strattera, and Wellbutrin. Any suggestions will be appreciated.Our neighbors also called Children's Services on us because they think that my child is being neglected. He likes to play outside on his scooter. I don't always go out with him, because I am busy with things and he knows his boundaries. I can see him from my living room window, and he knows how to press the intercom buzzer to get inside. So I am dealing with that agency now.

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[Guest guest]

, can't you find another doctor? Pat K************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

For some reason, she doesn't want to listen to my concerns about that.

I even suggested that he may be having seizures and that's one reason

she wants to add Depakote, just in case he is having them. She said

that any tests probably won't show anything.

>

> I don't understand why the doctor won't take your son off the

Strattera when

> it is not helping and is probably causing the aggression. Pat

K<BR><BR><BR>

> **************************************<BR> Get a sneak peek of the

all-new AOL at

> http://discover.aol.com/memed/aolcom30tour</HTML>

>

[Guest guest]

Wow, all those meds and your son is still aggressive and the doctor wants to add another med!! You would think the doctor would stop doing what isn't working. Well, you have my sympathy. I have been there. Love and blessings, Pat K************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

If I was going to put him on Depakote, I would at least take him off of the Strattera; I'm not an M.D., but I have had a very negative experience with Strattera and with a ped. psy. When it comes to autism, they don't know what they are doing. Just my opinion. Pat K************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Amen, Lois, Depakote was terrible for Karac too. Pat K************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Is this a pediatrician? I'd be horrified if a doctor wanted to add

an anti-seixure med " just in case " without doing any testing. We're

not talking adding Tylenol or something fairly benign ... my stepson

was on Depakote at 8 for epilepsy and he had spent 5 days in the

hospital just to make sure it really was epilepsy and to try out

meds.

How close are you to a totally unrelated ER? Maybe find some

totally impartial people?

> >

> > I don't understand why the doctor won't take your son off the

> Strattera when

> > it is not helping and is probably causing the aggression. Pat

> K<BR><BR><BR>

> > **************************************<BR> Get a sneak peek of

the

> all-new AOL at

> > http://discover.aol.com/memed/aolcom30tour</HTML>

> >

>

[Guest guest]

We have an appointment to see a Dr. DeMio in

Cleveland, OH (a few hours from where I live) in

December. He does biomedical treatments and

supplements, and I have heard good things about him.

There really isn't too much of a choice as far as

another doctor around here. His developmental

pediatrician referred us to a psychiatrist. There are

only two agencies in my area that have pediatric

psychiatrists that will take my insurance.

I have been told that I have the best treatment team

in my area. I beg to differ. We have been thinking

about moving to Columbus or over by Cleveland for

better services. Columbus has alot of services. We

have to stay here until May, 08, when our lease is up.

Since the doctor won't stop the Strattera, should I

add the Depakote? He was getting really agitated when

I visited him last evening. He started hitting

himself in the head and getting loud with me.

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[Guest guest]

His doctor is a pediatric psychiatrist. She said that she believes

most of his aggression is behavioral, and probably not seizures. But

she said in case there are any, this med would help. He did have an

EEG a few years ago and nothing was found. I am not sure what to

do.

Is it normal to be in the hospital when you first start Depakote? He

is coming home today, but I am not sure there will be any change.

> > >

> > > I don't understand why the doctor won't take your son off the

> > Strattera when

> > > it is not helping and is probably causing the aggression. Pat

> > K<BR><BR><BR>

> > > **************************************<BR> Get a sneak peek of

> the

> > all-new AOL at

> > > http://discover.aol.com/memed/aolcom30tour</HTML>

> > >

> >

>

[Guest guest]

JJ CANNOT take Depacote!!!!!! (sp)? It made him VERY mean 10 min. After taking it and he tore up the whole living room. (did this right after the first dose). Not all kids are alike tho so It might help BUT I don't agree with the use of 'cocktail' drugs. Lois

Re: another update on my son

[Guest guest]

That is wonderful that you have an appointment with Dr. DeMio. I'm wondering if you called his office and told them about the hospitalizations, all the problems with the psychiatrist, etc. that they wouldn't be able to get you in sooner. You're really in a crisis, and I think they would be responsive to that. I'm on so many autism boards, behavioral and biomed, and I've heard the same story time after time, with aggression being caused by underlying medical conditions. Most of the time it seems to be yeast, or die-off of bacteria in the gut. Are you on the Yahoo group BioMedHeads? I'd seriously get on that one at least. CK2 is another good one with very helpful people. One of the BioMedHead moderators, Kim, used to live in Ohio and went to Dr. DeMio. I'm sure she'd be able to help you on line and off line too. She knows that area, even though she lives in Connecticut now. HTH. Marie Wylie wrote: We have an appointment to see a Dr. DeMio inCleveland, OH (a few hours from where I live) inDecember. He does biomedical treatments andsupplements, and I have heard good things about him. There really isn't too much of a choice as far asanother doctor around here. His developmentalpediatrician referred us to a psychiatrist. There areonly two agencies in my area that have pediatricpsychiatrists that will take my insurance. I

have been told that I have the best treatment teamin my area. I beg to differ. We have been thinkingabout moving to Columbus or over by Cleveland forbetter services. Columbus has alot of services. Wehave to stay here until May, 08, when our lease is up.Since the doctor won't stop the Strattera, should Iadd the Depakote? He was getting really agitated whenI visited him last evening. He started hittinghimself in the head and getting loud with me.__________________________________________________________Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

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[Guest guest]

Well, what a bummer. I'm so sorry. Pat K************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Well, my nightmare continues. We just brought Ricky home from the

Assistance Center. We hadn't even been home 30 minutes and he went

outside riding his scooter. When he realized there was no one to play

with, he started to cuss and scream at the lawn care man and then the

landlord came out to see what the problem was.

Well, my fiance just broke up with me, because of Ricky's behavior.

[Guest guest]

Aggression can also be caused by bacteria. My son never had

aggression issues until I seriously tackled his yeast problems;

bacteria tends to stir up then. That combined with watching

aggressive kids at school was a recipe for disaster.

Depakote can cause side effects, worst of all liver damage. Your

son's already on so much ... how much more can they pile on a little

kid? I'm surprised that no-one's suggested weaning him off

everything in a controlled environment and getting a current

baseline. Esp. the doctor, if she's a ped. psychiatrist. I'm no

doctor but my sister's a pharmacist ... she pointed me toward

clinical trials for Geodon where the max dose for adolescents with

autism was 40 a day.

I've heard great things about Dr. Demio; my guess is he'll help you

more than mainstream medicine has at this point.

> > > >

> > > > I don't understand why the doctor won't take your son off

the

> > > Strattera when

> > > > it is not helping and is probably causing the aggression.

Pat

> > > K<BR><BR><BR>

> > > > **************************************<BR> Get a sneak peek

of

> > the

> > > all-new AOL at

> > > > http://discover.aol.com/memed/aolcom30tour</HTML>

> > > >

> > >

> >

>

[Guest guest]

That doctor makes no sense to me. If your son hasn't gotten better, why subject him to all the potential side effects of those meds? Why spend the money on them?

Trust me. Karac got Tardive Dyskenisia on just 80mg of Geodon, and I told the ped. psy. I thought that was too high a dosage, but the doctor didn't believe me. I am not entirely ignorant; I do have a Ph.D. and I have had psychopharmacology.

I'm glad your guy came back. blessings, Pat K************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

I decided to start the Depakote. He has to have blood work

tomorrow. My fiance did return home last night. I have wanted his

doctor to put him in the hospital or like you said, in a controlled

environment to wean him off of the medicine and start him over. For

some reason, this doctor won't do that. She told me yesterday that

she doesn't think the medicine is causing any aggression because he

hasn't gotten any worse or better. I do think it could be

bacteria/yeast problems, especially the way his bowel movements

smell. I am looking forward to Dr. DeMio's appointment. I realize

it isn't until December, which financially is fine with me. I don;t

have the $549 he needs for the first appointment right now.

> > > > >

> > > > > I don't understand why the doctor won't take your son off

> the

> > > > Strattera when

> > > > > it is not helping and is probably causing the aggression.

> Pat

> > > > K<BR><BR><BR>

> > > > > **************************************<BR> Get a sneak peek

> of

> > > the

> > > > all-new AOL at

> > > > > http://discover.aol.com/memed/aolcom30tour</HTML>

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I just asked my sister about the meds; she and her boss said that

the Geodon dose alone is just about the max dose for an adult, never

mind a child. She obviously won't give medical advice but just said

that she'd definitely look for a second opinion ... if your son

can't verbalize what's happening inside his body or mind well, who

knows what or how he feels. My 4yo is non-verbal and probably

hasn't felt well since he was pre-solid foods and just gets horrible

when he's sick. A year or so ago, all he'd do is scream one week

and I was going insane ... school had said it was all behavioral ...

turned out he was getting rotovirus and was trying to tell me he was

really sick.

Lots of the tests Dr. DeMio will order can be paid in bits and

pieces; we paid off a lot of them $5 or $10 at a time. A big piece

of the puzzle is the stool analysis ... that'll show yeast or

bacteria or parasites along with an assortment of other stuff. Is

your son GFCF? If not, you may want to try digestive enzymes at

meals and snacks; leaky gut can make certain things in foods act

like opiods and can wreak havock. Has he been on lots of anti-

biotics? That can kill all the good bacteria in the gut and also

make things unpleasant. Maybe add in a probiotic. There are a

handful of good OTC yeast and bacteria things you could try ... lots

of things are expensive but there are ways to get around it.

> > > > > >

> > > > > > I don't understand why the doctor won't take your son

off

> > the

> > > > > Strattera when

> > > > > > it is not helping and is probably causing the

aggression.

> > Pat

> > > > > K<BR><BR><BR>

> > > > > > **************************************<BR> Get a sneak

peek

> > of

> > > > the

> > > > > all-new AOL at

> > > > > > http://discover.aol.com/memed/aolcom30tour</HTML>

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Maybe my dd's dr hates me and he just is afraid to tell me.LOL!!

When my dd is taking a med and we are having alot of problems or the problems she had got worse after starting a med, I question the med. And I have taken her off of meds like strattera without the dr saying too.

And now he asks me about different meds. And if I have tried to reduce or go up a notch or take them away altogether.

By doing this, we have found that my dd does well on low doses of a couple of meds instead of a large dose of one med.

Strattera was on that caused alot of rage.

And depakote too. She was on depakote for her seizures for a number of years before the rage took over and we had to get her off of it.

Strattera is not a med that has to build up in your system. You can take it or not take it frankly.

We have also found that with ADHD meds, if you are not sure the med is working then it probably isn't. We tried concerta, metadate, and strattera before just plain ritalin. Strattera seemed to help but she was so angry on it. I didn't link it until a friend said she couldn't take the strattera anymore as she felt extreme rage when she took it. And that was an ah ha moment. We tried plain ritalin and there was no doubt that it worked and we see no side effects..except appitite problems.

I guess what I am saying is that if you feel that it is the meds and the dr isn't listening, the find one that will. Ask around. They are out there. My dd's neuro thought that I was nuts about meds problems. Fortunately I had the psych dr to back me up with her. We have a new neuro too.

Anyway, I hope that you can get your son calmed down soon. I have btdt. And I am sure there are many here too.

Elaine

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[Guest guest]

Thanks for replying. I have never been completely comfortable with the

high dosage of Geodon, but didn't realize he was on an adult dosage.

He is about 120 pounds. Could that be why he is on a high dose?

Where would I go to find digestive enzymes? Is there a certain brand?

Can he have them with the medication he is on now? I don't anything

about the digestive enzymes or probiotics. We have a natural food

store, maybe they can help me with this, before we see Dr. Demio. I

have heard good things about fish oil supplements as well. Something

has to give.

Thanks for the suggestions,

[Guest guest]

We see the nurse at the doctor's office in two weeks. I really do

want him off of these meds, but she doesn't seem to get that idea. I

asked her about the Strattera, and she doesn't think that the

Strattera is causing his aggression, as she thinks it is behavioral.

Well we are seeing a Dr. DeMio in Cleveland in December that does

biomedical treatments. At that time, Ricky will be off of these

meds. We are considering moving to Columbus or Cleveland or some

other bigger metro area in Ohio for more and better help. We can't

even get respite through MRDD, other than for $200 a day. There are

two residential centers where he could go for that price. There are

no private providers " supposedly " where I live. I can go out and

find my own " babysitter " , but how can I meet others and make friends

when my child behaves like this. His case workers can't seem to

understand that.

I just feel like the help we are getting isn't enough. I have been

told that I have the best of the best in my county. I just can't see

that or believe that.

>

> That doctor makes no sense to me. If your son hasn't gotten

better, why

> subject him to all the potential side effects of those meds? Why

spend the money

> on them?

> Trust me. Karac got Tardive Dyskenisia on just 80mg of Geodon, and

I told the

> ped. psy. I thought that was too high a dosage, but the doctor

didn't believe

> me. I am not entirely ignorant; I do have a Ph.D. and I have had

> psychopharmacology.

>

> I'm glad your guy came back. blessings, Pat K<BR><BR><BR>

> **************************************<BR> Get a sneak peek of the

all-new AOL at

> http://discover.aol.com/memed/aolcom30tour</HTML>

>

[Guest guest]

I only have a minute but wanted to reply.

My sister works primarily for long-term care patients and the

majority are adult. There are a few kids in hospice and a decent

amount in residential care. She said the 180 is a big dose for an

average sized man, which I assume is about 200 pounds. I looked up

the clinical trial from it and the kids all got a max of like 40.

Digestive enzymes - you can probably get them at a GNC or Vitamin

Shoppe but we used to go through ASDmarket.com and other

specifically autism supplement places. I have found that Vitacost

is decent, though, and I'm very pleased with their customer service

and their shipping.

Email me off post if you want.

>

> Thanks for replying. I have never been completely comfortable

with the

> high dosage of Geodon, but didn't realize he was on an adult

dosage.

> He is about 120 pounds. Could that be why he is on a high dose?

>

> Where would I go to find digestive enzymes? Is there a certain

brand?

> Can he have them with the medication he is on now? I don't

anything

> about the digestive enzymes or probiotics. We have a natural food

> store, maybe they can help me with this, before we see Dr. Demio.

I

> have heard good things about fish oil supplements as well.

Something

> has to give.

>

> Thanks for the suggestions,

>

>

>

[Guest guest]

Thanks for all of your help. I will email you privately to ask you

some questions about the supplements. I am getting ready to go to

bed, as I have had a rough day today and we need to take Ricky to the

hospital in the morning to get blood work done.

Anyways, I do think that his dosage is way too high. I didn't

realize it was that much too high.

He told me tonight that he hated me and wants to kill me. Now, he

has frequently told me that he hated me, but never that he wanted to

kill me.

I am so frustrated and more depressed.

> >

> > Thanks for replying. I have never been completely comfortable

> with the

> > high dosage of Geodon, but didn't realize he was on an adult

> dosage.

> > He is about 120 pounds. Could that be why he is on a high dose?

> >

> > Where would I go to find digestive enzymes? Is there a certain

> brand?

> > Can he have them with the medication he is on now? I don't

> anything

> > about the digestive enzymes or probiotics. We have a natural

food

> > store, maybe they can help me with this, before we see Dr.

Demio.

> I

> > have heard good things about fish oil supplements as well.

> Something

> > has to give.

> >

> > Thanks for the suggestions,

> >

> >

> >

>

[Guest guest]

,

It sounds like he has Bipolar. Lois

Re: another update on my son

[Guest guest]

" Aha " is right.I just recently took my son off of depakote and klonopin for

seizures about 3wks ago.He was raging 3 times a day everyday ...the day he had

no meds he was calm.I am counting each day and praying this is the answer but it

is also encouraging to hear that this has been someone elses experience as well

and that I'm not just imagining things.

Stacey

Date: 2007/07/19 Thu AM 11:45:50 CDT

To: AutismBehaviorProblems

Subject: Re: Re: another update on my son

Maybe my dd's dr hates me and he just is afraid to tell me.LOL!!When my dd is

taking a med and we are having alot of problems or the problems she had got

worse after starting a med, I question the med. And I have taken her off of meds

like strattera without the dr saying too.And now he asks me about different

meds. And if I have tried to reduce or go up a notch or take them away

altogether.By doing this, we have found that my dd does well on low doses of a

couple of meds instead of a large dose of one med.Strattera was on that caused

alot of rage.And depakote too. She was on depakote for her seizures for a number

of years before the rage took over and we had to get her off of it.Strattera is

not a med that has to build up in your system. You can take it or not take it

frankly.We have also found that with ADHD meds, if you are not sure the med is

working then it probably isn't. We tried concerta, metadate, and strattera

before just plain ritalin. Strattera seemed to help but she was so angry on it.

I didn't link it until a friend said she couldn't take the strattera anymore as

she felt extreme rage when she took it. And that was an ah ha moment. We tried

plain ritalin and there was no doubt that it worked and we see no side

effects..except appitite problems. I guess what I am saying is that if you

feel that it is the meds and the dr isn't listening, the find one that will. Ask

around. They are out there. My dd's neuro thought that I was nuts about meds

problems. Fortunately I had the psych dr to back me up with her. We have a new

neuro too. Anyway, I hope that you can get your son calmed down soon. I have

btdt. And I am sure there are many here too. Elaine

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Checked by AVG Free Edition.

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