Re: medications (drowsiness)and enzymes PLEASE HELP!!!!!!/Kathy

[Guest guest]

Kathy thanks for the information. Now I have another question. I

don't know if you can help me but I thought I would ask in case you

could. My son is about to be four is 30 pounds and the doctor hasn't

taken his levels in almost a year now. My son's levels last time they

were checked were 110 and the range was 50 to 100. He has increased

the levels since then and never had his blood levels checked. was

this blood level of medication be to high to begin with. I don't

quite understand why he up his medication when he was over the

range.My son doen't have many seizures (once or twice a year) but

when he has them they are bad. They don't stop and we have to spend

days in the hospital. Could that be the reason for such a high amout

of meds? Like I said I don't know if you can answer my questions but

thanksvfor what you have told me so far. Rebekah

> If you are no longer seeing undigested medication in your son's

> stools I feel the Depakote could be contributing to the

drowsiness.

> It is very possible your son needs his dose adjusted. If his

doctor

> isn't very helpful I would just tell the doctor you no longer see

> undigested medication in your son stools and he has become more

> drowsy. Then ask him if his dose could be evaluated (blood levels).

> I am a pharmacist and that is just my opinion.

>

> Kathy

>

[Guest guest]

Rebekah, just as a guardian of a child on Depakote, I do not understand why

the doctor has not taken blood test in such a long time. has his

checked to be sure that it is not causing a problem with his liver. I

thought it was suppose to be checked at least every three months. Of

course, his is for his bipolar but the liver question should still be

addressed, it would seem to me. It seems sometimes that we have to remind

the doctors. should have had a blood draw BEFORE he was started on

the depakote but his doctor did not think about it. While she was on

maternity leave, his other doctor immediately ordered a blood draw.

Betty

grandmother and guardian to

age 10 Bipolar --750 mg Depakote, 20 mg Adderall, Claritin-D, DDAVP

..4 MG daily.

Evan age 7 nonverbal autism--Risperdal 2.25 mg daily

age 5 ADHD/RAD/PTSD, maybe bipolar --Tenex 1 mg, Clonidine .2 mg,

Concerta 18 mg daily

[Guest guest]

First of all, from all what you've shared about your son's doctor, I

would definitely get a second opinion. Are you using the sprinkles?

It sounds like his levels are high but I wouldn't adjust the dose

myself. High that are too high cause an increase in side

effects/toxicity not an increase in seizure control. An adult may

only get levels checked yearly as long evetything else remains the

same. A child's body is changing so levels need to be checked on a

regular basis. If blood levels are high and the seizures are still

not controlled then other meds/opinions need to be considered not

just increasing the dose. I would tell the doctor about the

increased drowiness and the change in his stool and then tell him you

want a blood level done. At the same time I would be working on that

second opinion. I hope this helps. You can e-mail me anytime.

Kathy

> > If you are no longer seeing undigested medication in your son's

> > stools I feel the Depakote could be contributing to the

> drowsiness.

> > It is very possible your son needs his dose adjusted. If his

> doctor

> > isn't very helpful I would just tell the doctor you no longer see

> > undigested medication in your son stools and he has become more

> > drowsy. Then ask him if his dose could be evaluated (blood

levels).

> > I am a pharmacist and that is just my opinion.

> >

> > Kathy

> >

[Guest guest]

Thanks again Kathy!!!!I've been trying to contact my son's children's

medical services nurse. She is usually very helpful. She dosen't

always know what to do so I try to get the best information I can and

relay it to her. We, the nurse(kathy)and I, were kind of confused

why the neurologist didn't take blood tests last time. (I think we

both assumed he knew what he was doing). I'm going to let her know

about all of this when she calls me back. Probably Monday morning

since she was out on Friday.

YES , Kienan uses the sprinkles. Is this o.k.?I won't ajust the dose

myself. I wouldn't dare. I've seen my son almost die from going to

the hospital with seizures. He didn't almost die from the seizures

but they have O.D. him in the hospital trying to stop them. Every

time we go to the E.R. it is a nightmare. Could tell several horror

stories about that.

Now that you mention the toxicity, it makes me think of when my son

was on tegratol (sp?). He did well on it for awhile but the doctor

kept increasing the dose and my son started having more seizers on it

as he inceased the dose. His seizers went from gaps of several

months to daily. We ended up in intensive care for days and the

doctor told me the medication went toxic. I remember there was

another little girl in intesive care at the same time with the same

problem. She had the same doctor as we did. He explained to me that

sometimes medication does that in children (goes toxic). So I'm

always afraid my son's medications will go toxic. Could it be he is

giving these children to much medication? That the meds don't just go

tocxic themselves he is giving them doses that are too high? From

what your telling me this is what it sounds like.

He had my son on Lamictal and depakote (sprinkles) after his last

seizure (this was about 9 months ago). He was decreasing the depakote

as he increased the Lamictal. This was a horrible. My son wouldn't do

anything but lay in the floor all day screaming,with a blanket over

his head. This went on for way too long (three weeks, maybe a little

longer, as I fought with the neouroligist's nurse to get answers from

the doctor)(this is not the same nurse (kathy) that I spoke of

before). I had to demand that I see the neurologist (kathy helped

with that) and I demanded he take my son off the Lamital. He didn't

want to do it . He told me there was no way that this medication

could be causing this problem. This had not ever happened before the

Lamictal so I don't see why it couldn't be. He went to the extent of

asking me if I had dropped my 3year old son on his head, if maybe he

hit his head or if maybe I had let him get too much of the medication

some how. My son hates medication and there was no way for him to get

to it anyway. He was almost insisting some how it had to be my fault,

not the medication. He made my son have yet another C.A.T scan which

was normal. No head trama. So he ended up insisting my son must have

got to the medication some how and I didn't know it. He took him off

of the lamictal. He wanted to put him on Topamax or zonisamide and I

insisted we just keep him on the sprinkles of depakote and see how it

went. I didn't want any more disasters with a new medication. The

Depakote has worked the best and for the longest amount of time in

keeping his seizures away. I've heard worse stories about other

doctors in town that is why I stay with him, I have heard such

wonderful things about him. And everyone here seems to think he is

great but I have been questioning his greatness for awhile. I will

have to go out of town for a second opinion. But I do that anyway to

see the Peds. G.I. Do you know anything about topamax or

zonisamide? sorry this is so long. Thanks again. Rebekah

[Guest guest]

Hi!

The sprinkles are fine! I thought that is what he was most likely

using. I'm not too familar with ped use of lamictal. I will look up

some info for you tomorrow and monday. I don't know your doctor and

really am not comfortable making a judgement on his ability as a

doctor. It could be he is very knowledgable but it is strange to not

do blood levels. I don't know what he meant by the drug became toxic-

-it sounds like the levels were too high. Drugs levels can change

overnight when something with the bodies chemistry changes. If your

son GI system is compromised (digestion is off, bacterial overgrowth,

or fungal overgrowth) that alone could affect drug absorption and

blood levels. Maybe your son's doctor isn't familiar with the

biochemical aspect of Autism and doesn't realize all the underlying

problems/variables your son could be experiencing. What I'm trying

to say is he may be a very good doctor for seizure disorders in

general but ignorant of the other issues your son may be facing. I

personaly feel a second opinion is always a good idea when you have

unanswered questions or doubts.

Kathy

> Thanks again Kathy!!!!I've been trying to contact my son's

children's

> medical services nurse. She is usually very helpful. She dosen't

> always know what to do so I try to get the best information I can

and

> relay it to her. We, the nurse(kathy)and I, were kind of confused

> why the neurologist didn't take blood tests last time. (I think we

> both assumed he knew what he was doing). I'm going to let her know

> about all of this when she calls me back. Probably Monday morning

> since she was out on Friday.

> YES , Kienan uses the sprinkles. Is this o.k.?I won't ajust the

dose

> myself. I wouldn't dare. I've seen my son almost die from going to

> the hospital with seizures. He didn't almost die from the seizures

> but they have O.D. him in the hospital trying to stop them. Every

> time we go to the E.R. it is a nightmare. Could tell several horror

> stories about that.

> Now that you mention the toxicity, it makes me think of when my son

> was on tegratol (sp?). He did well on it for awhile but the doctor

> kept increasing the dose and my son started having more seizers on

it

> as he inceased the dose. His seizers went from gaps of several

> months to daily. We ended up in intensive care for days and the

> doctor told me the medication went toxic. I remember there was

> another little girl in intesive care at the same time with the same

> problem. She had the same doctor as we did. He explained to me that

> sometimes medication does that in children (goes toxic). So I'm

> always afraid my son's medications will go toxic. Could it be he is

> giving these children to much medication? That the meds don't just

go

> tocxic themselves he is giving them doses that are too high? From

> what your telling me this is what it sounds like.

> He had my son on Lamictal and depakote (sprinkles) after his last

> seizure (this was about 9 months ago). He was decreasing the

depakote

> as he increased the Lamictal. This was a horrible. My son wouldn't

do

> anything but lay in the floor all day screaming,with a blanket over

> his head. This went on for way too long (three weeks, maybe a

little

> longer, as I fought with the neouroligist's nurse to get answers

from

> the doctor)(this is not the same nurse (kathy) that I spoke of

> before). I had to demand that I see the neurologist (kathy helped

> with that) and I demanded he take my son off the Lamital. He didn't

> want to do it . He told me there was no way that this medication

> could be causing this problem. This had not ever happened before

the

> Lamictal so I don't see why it couldn't be. He went to the extent

of

> asking me if I had dropped my 3year old son on his head, if maybe

he

> hit his head or if maybe I had let him get too much of the

medication

> some how. My son hates medication and there was no way for him to

get

> to it anyway. He was almost insisting some how it had to be my

fault,

> not the medication. He made my son have yet another C.A.T scan

which

> was normal. No head trama. So he ended up insisting my son must

have

> got to the medication some how and I didn't know it. He took him

off

> of the lamictal. He wanted to put him on Topamax or zonisamide and

I

> insisted we just keep him on the sprinkles of depakote and see how

it

> went. I didn't want any more disasters with a new medication. The

> Depakote has worked the best and for the longest amount of time in

> keeping his seizures away. I've heard worse stories about other

> doctors in town that is why I stay with him, I have heard such

> wonderful things about him. And everyone here seems to think he is

> great but I have been questioning his greatness for awhile. I will

> have to go out of town for a second opinion. But I do that anyway

to

> see the Peds. G.I. Do you know anything about topamax or

> zonisamide? sorry this is so long. Thanks again. Rebekah