medication

June 29, 2001

Carol ,

I won't be much of help , hopefully just comforting . Its normal to

feel paranoid as Trisha is taking alot of meds . Its too soon, once

her meds kicks in . Yes , its hard to identify which meds are

working but hang in there , time will tell . Keep a journal of it .

Prayers that it will help her and that all goes well . Keep us

posted . Take Care .

Irma , 12, DS/ASD.

> Trisha just got put on clonidine today. She has never been on any

meds like

> this before. What can I expect from this medicine and how does it

work? She

> has also been put on zyrtec for allergies and I was wondering how

that will

> work with the clonidine. We also found out that she has some kind

of fungus

> growing in her hair (we don't know how she got that, whether from

school or

> camp or home) so she has also been given griseofulvin ultra. Plus

she is

> already taking levoxyl for her thyroid. That sounds like a lot of

medicine

> to me. I am probably just being paranoid but I worry. How will I

know if

> the clonidine is working or even if there are side effects and if

so how will

> I know to which medicine the side effects belong? Any help would

be

> appreciated.

>

> Carol

> Trishasmom

>

June 30, 2001

Thank you! It's hard to explain but I can see it in her face that she knows

her body feels different, she's drowsy alot but more than that it's a look in

her eyes that says, I feel strange. One time before surgery I was given some

medicine that made my whole body feel like it was on fire on the inside and I

remember crying out what is wrong with me and being so scared until they told

me that the medicine was supposed to do that. I can't help but wonder if

Trisha might feel a little panicky with the changes in her body. How do you

explain to a child that it's going to be ok? It's so hard to know how much

she understands and whether you are reaching her or not. I think the hardest

part of raising Trisha is not the DS but the things we have to do (like

medicines and surgerys etc) that they don't understand and the look in her

eyes that says I don't know why you are doing this. When my son was small

and needed medicine or surgery I could talk and explain and answer some of

his questions, but with Trisha she can't ask questions and I can't help but

wonder if any of my explanations are understood by her. The only thing I

really know how to do is just love her and give lots of hugs.

Carol

Trishasmom

October 18, 2001

I e-mailed Dr. R to ask him waht I should get my Dr. to prescribe for pain. I

have had the absolute worst headache ever this week. I went to the

chiropractor, and tried all I could without meds, but I couldn't last any

more. I took Vioxx until Dr. R let me knoww hat meds would be good to ask my

PCP to prescribe. I still haven't heard anything.

Anyone know what he suggests?

Thanks

October 18, 2001

Hi : Hope you are feeling better. Vioxx does not help me but it does

some people. I did take it for a toothache and didn't die so maybe it did

work. Phyllis

October 18, 2001

Codeine is a narcotic and according to Dr. R not a problem - if the

cough syrup had alcohol that would be a problem. Better to check to be

sure though. Hope you feel better soon!

MEDICATION

I went to the Dr today and he prescribed Zithromax for my cold and sum

cough syrup that has no alcohol or sugar but asked me if i could take

codeine..........* i thought to myself........hmmmmmm i dunno.......can

IIIIIIIIIII but i was almost sure that i couldnt???* ........it is

called

Pancof-HC

has hydrocodone bitartrate in it 3mg

chlorpheniramine maleate 2 mg

and pseudoephedrine 15mg

Anyone know bout this?

hmmm think i will send dr r a copy of this also

oh i weighed in at 235...... the last weight there was 256 and that was

on

sept.10th ...Feeling pretty good bout that......21 lbs in 5 weeks...but

i

am run down......

~Kathy in NC~

2/14/01

397/370/235/170

October 19, 2001

Narcotics is what he told me -- in the lowest form that will do the

trick. Better than aspirin, Tylenol Advil, etc.

Re: MEdication

I e-mailed Dr. R to ask him waht I should get my Dr. to prescribe for

pain. I

have had the absolute worst headache ever this week. I went to the

chiropractor, and tried all I could without meds, but I couldn't last

any

more. I took Vioxx until Dr. R let me knoww hat meds would be good to

ask my

PCP to prescribe. I still haven't heard anything.

Anyone know what he suggests?

Thanks

January 6, 2002

Hi and welcome!

I'm so sorry you are having the medication nightmare. Been there,

done that!! It's the worst.

I'll echo what others have said - start VERY low and go slow. That

can't be stressed enough. Our psych. is wonderful, but he doesn't seem to

grasp that low means LOW. We have been on Paxil, which was great for a year,

then pooped out, Luvox, which was truly a nightmare, and are now having

success with Celexa. What I learned with Luvox was that our daughter really

reacts strongly to SSRIs and we were increasing it too fast. She was off meds

all fall because of all the problems that caused, and when she began to

relapse in Nov. we decided to try Celexa. Her psychiatrist started her out on

10 mg. Within two days she was talking non-stop, hyper, etc. I cut it back to

5 mg. for a full month before moving it up to 10, and we have seen no

problems. We will go back in January and get an increase (her OCD is still

not controlled, though she is happy again) and I KNOW we will have the same

discussion. He will up it to 20 and I will say " no, one month on 15 , then

20 " . Luckily we work well together and he listens to me. I hope you have the

same luck.

I once read on this list about someone who was told to just LICK the

tablet to begin with. That image has stayed with me. I found it amazing that

a crumb that was barely visible (we lost it several times) of 5 mg. of

Celexa could help Annie that much, but it did!! Since your son seems to

accumulate the meds, maybe moving even SLOWER (lick that tablet!!!) might

help.

Hang in there. It WILL get better. You are obviously right on top of

things (the right docs, therapists, websites, books - isn't Teaching the

Tiger great?) and you're headed in the right direction. The worst part is

finding medication that works for you. When it does, it's a miracle!

, mother to Annie (nine, sudden onset of OCD at age 41/2 after viral

encephalitis) and Ben (6, who assumes all older sisters have OCD)

January 13, 2002

Hi:

Welcome to the list. Thanks for sharing about your son and his

medication experience.

My son, Steve was also on Luvox and Paxil and is now on Celexa

which is working great for his MDD.

I have heard that some people are incredibly sensitive to SSRIs and

can get good results with very low dosages. This is rather unusual

but I have heard of people titrating up very slowly with one lick

of the pill per day then moving to two licks, and so on until they

find the low level dosage that works for them.

Steve was titrated up way too fast - we were so ignorant about meds

in those days - and he had terrible BSEs (behavioral side effects).

i would never do this again. Low and slow is the way to go and you

have done well to back off when things get too rough.

As Kathy R. has said so well, the first line treatment for OCD is

Cognitive behavior therapy (CB T) specifically exposure and

response prevention (E & RP) and many kids can do well with just this

therapy if they have no confounding comorbidities.

Although it is hard to find m.h. practitioners skilled and

knowledgeable about E & RP we found the search well worth it. Steve

will soon be 15 and is a very different kid from the one we had

about 4.5 years ago who was severely ill with OCD and MDD. Good

luck, take care, aloha, kathy (h)

kathyh@...

> Thanks for the welcome! Let me tell a little more detail about my

> son's history with medication. He started out on Fluvoxamine at the

> lowest possible dosage. (1/2 25 mg tab) After 8 weeks the doctor

felt

> we needed to up it to 25 mg. This caused him to develop new and

> worse symptoms. They weened him off the Fluvoxamine and then gave

> him 7 days to clean out his system. Then they started him on the

> lowest dosage of Paxil and after a couple of weeks, they upped it

> because it was having no effect at all. Upping the dosage caused

the

> worst symptoms we had seen yet. This is when the doctor suggested I

> find a psychiatrist familiar with ocd and meds. What a farce that

> was! There aren't many in our area that deal with ocd, meds, in

> children. Finally I found an excellent psychiatrist/therapist team.

> They felt trying Luvox at the lowest dosage seemed like a good idea

> because he had no side effects until we upped the dosage. We are

> using CBT (my son adores the therapist)with much success until out

of

> the blue the side effects began. The hallucinations were the

scariest

> part. Within a day after stopping the Luvox they stopped. Tomorrow

we

> go back to psychiatrist. I'm armed with my list of possible meds

> (from the OCFoundation) and their side effects.

February 6, 2002

In a message dated 2/6/02 1:36:40 AM Pacific Standard Time,

writes:

>

> Yesterday we took JJ to the psych for his check-up. On the way there we

> stopped at the local DS suport group office. It is in a open shopping

> center on the second floor. JJ hates small places like elevators so we

> took

> the stairs. The framing was metal with cement stairs. The stairs had no

> backs(if that makes sense) JJ would not go up them--he was trembling as I

> tried to get him up. Garry finally came down and we were on both side

> holding his hands to get him up.

>

> We spoke to the dr. about this just in passing. He did not want to

> medicate

> for this type a anxiety and I didn't ask him to. His reason was that the

> meds for anxiety would also make him more apt to wander/elope. For JJ this

> would be true. When he gets out he sits on the front doorstep. This is

> good!! We don't need him taking off. And I had never thought of it that

> way.

>

> & Garry, parents of (11 ds), (10 ds), JJ (8

> ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (4 ds). All

> adopted.

>

,

Could it be a depth perception issue? I worked with a teenager with autism

and he hated one mall in town. It has the open center court and he would

actually feel the floor with his foot if I get him to move toward the center

of it. It was like he thought the floor wasn't flat. He was OK if I walked a

head of him and had him look straight at my face but he never did start doing

it on his own.

He also hated elevators or small spaces. He also wouldn't have done those

stairs.

Karyn

February 6, 2002

In a message dated 2/6/02 3:00:06 PM Pacific Standard Time,

writes:

> Karyn,

> This would not surprise me. JJ does have sensory issues, and gets sensory

> intergration at school.

>

> I remeber being told the same type story about some kids on checked floor

> vinyls.

>

> & Garry, parents of (11 ds), (10 ds), JJ (8

>

Yes , we had a child with that issue also.

It was interesting.

Karyn

February 6, 2002

Karyn,

This would not surprise me. JJ does have sensory issues, and gets sensory

intergration at school.

I remeber being told the same type story about some kids on checked floor

vinyls.

& Garry, parents of (11 ds), (10 ds), JJ (8

ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: KVanRyzin@...

>

>Subject: Re: medication

>Date: Wed, Feb 6, 2002, 11:20 AM

>

>In a message dated 2/6/02 1:36:40 AM Pacific Standard Time,

> writes:

>

>>

>> Yesterday we took JJ to the psych for his check-up. On the way there we

>> stopped at the local DS suport group office. It is in a open shopping

>> center on the second floor. JJ hates small places like elevators so we

>> took

>> the stairs. The framing was metal with cement stairs. The stairs had no

>> backs(if that makes sense) JJ would not go up them--he was trembling as I

>> tried to get him up. Garry finally came down and we were on both side

>> holding his hands to get him up.

>>

>> We spoke to the dr. about this just in passing. He did not want to

>> medicate

>> for this type a anxiety and I didn't ask him to. His reason was that the

>> meds for anxiety would also make him more apt to wander/elope. For JJ this

>> would be true. When he gets out he sits on the front doorstep. This is

>> good!! We don't need him taking off. And I had never thought of it that

>> way.

>>

>> & Garry, parents of (11 ds), (10 ds), JJ (8

>> ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (4 ds). All

>> adopted.

>>

>,

>Could it be a depth perception issue? I worked with a teenager with autism

>and he hated one mall in town. It has the open center court and he would

>actually feel the floor with his foot if I get him to move toward the center

>of it. It was like he thought the floor wasn't flat. He was OK if I walked a

>head of him and had him look straight at my face but he never did start doing

>it on his own.

>He also hated elevators or small spaces. He also wouldn't have done those

>stairs.

>

>Karyn

>

February 11, 2002

In a message dated 2/11/02 3:15:39 PM Pacific Standard Time,

writes:

> A few quirky things we not know from Ben's meds:

>

> Ritalin alone will over-stimulate him. This goes for Adderall too.

> However, a very small does of ritalin (5 mg in the morning, and 2.5 at

> noon) are extremely effective because he's also in risperdal now. But give

> him ritalin after 1 pm, when the risperdal's effects are slowing down, and

> he gets hyper again.

>

> He had a very bad over-action on Paxil the first time he took it- but we

> think the Prozac (which has a very long half life, which makes it hard to

> adjust doese correctly) but 2 years later, he took 4 DROPS of paxil /day

> and it was effective for several months. We are pretty sure because of his

> history with SSRI's that his system doesn't get rid of SSRI's effectively,

> and so they build up in his body. So after a while he appears to be on too

> high of a dose. when that happens, we wean him off, wait a few months, and

> start a different one. It has been worth it to go off an on it like this,

> because his ability to focus, not be distracted as much by internal forces

> (compulsive, impulsive behaviors), better control of aggressive behaviors,

> etc., are a big payoff.

>

> Start low, go slow, has been the motto of our pediatrician when it comes to

> meds.

Beth,

Isn't it amazing how medications work or don't work. For he was running

laps around the house after receiving 5mg of ritalin. Less did nothing. On 5

mg of Adderall he can control his impulsive tendencies.

Paxil was phenomenol but caused obsessive Pica behavior.

Only meds we've found that have a positive effect. Every child is so

individual.

I also have to remind myself not to change meds too quickly. I have a rule

that I don't change meds when he is falling apart. I wait until we recover a

bit or find a routine or sometimes a rut. Then know where I'm coming from.

Karyn

February 18, 2002

, Dr. R suggests Vioxx.

Flo

> ** Original Subject: RE: Re: MEdication

> ** Original Sender: TeacherGator@...

> ** Original Date: Thu, 18 Oct 2001 21:29:12 -0400

> ** Original Message follows...

>

> I e-mailed Dr. R to ask him waht I should get my Dr. to prescribe for pain. I

> have had the absolute worst headache ever this week. I went to the

> chiropractor, and tried all I could without meds, but I couldn't last any

> more. I took Vioxx until Dr. R let me knoww hat meds would be good to ask my

> PCP to prescribe. I still haven't heard anything.

> Anyone know what he suggests?

>

> Thanks

>

July 13, 2002

This is interesting! However the info on it says it is contradictory for seizure

disorders so I guess that leaves my dd out.<sigh> My dh has a stash of

suppositories of phenergan in the frig for when he gets sick and starts throwing

up and can't quit. His body does strange things and once he throws up a few

times his body goes into this mode of continual vomiting. The dr finally gave

him phenergan and that stops it. Makes him sleepy when he uses one. My sister

also used it when she was pregnant for horrible morning sickness and I guess I

never heard of other uses! thanks!

Elainef

July 13, 2002

Dear Louisa,

I found your posting to be very interesting. What led you to consider

phenergan as something that could possibly help your child. I remember this

as an ingredient in cough medicine when I was young and had to get a

prescription for bad chest congestion and to help with sleeping at night.

Thanks,

Medication

>

> We started Liesel on 'Phenergan' an antihistamine that contains a

> phenothiazine, which is a receptor blocker.

> She had started to back slide so much I knew I didn't have it in me

> to rebuild her world from the bottom up again (currently sick-but in

> recovery, mercury poisoned)

>

> It has turned our little girl around, her speech comprehension has

> become wonderful. She is far more manageable than she was before,

> she attacks and tantrums less, and does very child like things, that

> she never did before, simple things like tugging on my sleeve and

> saying " mummy " this is big.

> I did so much soul searching before we did this, but it was the best

> thing we ever did, people are amazed at the change in her.

>

> But the really proof of it is that Liesel actually tells me she

> feels better after she has taken her " magic pill " and woe betide me

> if I forget???

>

> Louisa

>

> Mum to Liesel 4 years old (ASD, SID and Hyperacusis) and Freyja 3

> years old (NT)

>

December 13, 2002

,

What awful news. Yes, contact your congressperson immediately. Also respond to

Medicaid and request a hearing on this matter. That should give you an extra

three months to work on this problem. Next contact the Community Legal Aid

office in your area and get a free lawyer and paralegal familiar with Medicaid

regulations to help you prepare for the hearing. This lawyer will likely

represent you at the hearing. In the meantime contact everyone you can including

the Epilepsy Foundation and gather as many letters from supportive professionals

as you can to present at the hearing stating that this will be catastrophic for

you. What was the reason that they sited for canceling your Medicaid card ?

Good Luck ! People do win on appeal but it can be challenging work getting it

done. If anyone can do though, you sound like a person who can.

M

December 13, 2002

:

Thank you for the help. The only reason they gave me was the

facvt that after my father died and they put me on disabilty instead of

medicad, that between my mother drawing widows benifits and what i draw is

that we cross the poverty line by 123.00 for a monthly household income. We

both draw together over 2,000 a month and that is the limit, but with my

medication alone going to cost us 700.00 alone, it does not leave us with

only 1300 a month for both of us to live on and she has medication also which

is not covered by insurance. By the time we pay utilites, car payment,

groceries, and medical expenses we will be in debt. We are all familar

with what prices of a neuro and blood tests are alone just for me, much less

my mother. There is no way to survive.

December 13, 2002

,

I am not a lawyer or a Medicaid expert but I have fought this kind of battle for

my sons before and to me it sounds like you have a case. Keep me posted on how

it progresses and if you have any more questions or need ideas please kick them

around with me - I'm sure there are others on the list that have experience too.

I would also get a copy of the Medicaid regulations - they are probably

available at your library or perhaps on line. Find out what section they are

citing for your being cancelled. Then check into the Americans with Disabilities

Act and the Social Security Act of 1986 ( I think that is the one that lays out

the federal guidelines for Medicaid), also check the congressional record for

the days these laws were debated and passed to determine what the intent of the

legislature was at the time they were passed. There may also be an equal

protection issue here. Legal Aid people are usually good but it never hurts to

help them with ideas for your case.

Good Luck.

Re: [ ] Medication