3:45 K is still up...

[totoro]

husband and I have decreased K's medications her Geodon by 1/2 from 80mg 40mg and stopped her Neurontin it was down to 100mg once daily.

I don't know if the medication change triggered this mood or if it was coincidental? She has not slept, is talking about imaginary friends... right now she is sobbing about her "brother" who died... we have given her 2 doses of Ativan... has not touched her....

poor thing

 

[Wiped Out]

Totoro,


Poor little K. I very much remember those nights-in fact it was one of those nights that brought me here. I hope she is sleeping soon and that you are able to get in some sleep as well. Hugs.

 

[Big Bad Kitty]

Poor sweetie!

Hoping she can relax soon (and that YOU can finally get some sleep!!)

(((hugs)))

 

[SRL]

totoro, be very, very watchful with Geodon. There's not been that many kids come through the early childhood board who have trialed it but I don't remember a single one of the little ones who have done well on it. Most have had extreme reactions. I don't know if that's due to the small sample of kids, the young age, the fact that the kids were already poor medication responders top begin with, but it along with Metadate raise my red flag any time a little one is trialing it.

 

[smallworld]

T, I'm so sorry. I hope by now K is sleeping.

Can you enlighten us -- why did the psychiatrist cut the Geodon in half? Why did he d/c the Neurontin?

I'm having a hard time understanding why the psychiatrist doesn't understand this child has serious hallucinations and needs to be on an AP.

 

[BusynMember]

I'd call psychiatrist even though it's Saturday. I have no clue what is causing her to be so upset, but she's miserable. The lack of sleep I'm going to guess is medication related since a medication change just happened and I know first hand that medication reductions can cause bizarre symptoms. I think 100 mgs. to nothing is too fast, but I don't know for sure. Sounds like she may be hallucinating too, poor thing. (((Hugs)))

 

[totoro]

She is still awake... husband and therapist and I made this decision after talking with psychiatrist... I talked to psychiatrist I think Tuesday.

She missed school Tuesday, was late wednesday... has been up late every night. Talking about the fairies, seeing things... cabwebs in her head. Passing out early in the day... Not wanting to leave the house. I asked psychiatrist what I should do? He was pretty stumped also... also with the Geodon switch her Dystonia has increased like crazy.

So he said lets increase the Geodon to 40 mg bid on Tuesday, he felt either this was going to move her forward and help her or we would see no improvement and or worsening.

He basically said it was our call. He still doesn't know if she genuinely has Hallucinations, husband was questioning this also. We also were qeustioning whether she was just not a good AP candidate...

I understand why is doing what he is, we have sypmtoms, weight gain, side effects... her age...

So he left this call up to us, husband and I said we would like to see if the Neurontin and the Geodon don't start helping we would like to stop them and have her on just Lamictal and Prazosin for a week or so...

I really would like to see what it is doing, if the movements stop... what symptoms she has left???

This is what therapist wants to do also and she has known her the longest...

As for the hallucinating... Ihave been laying in bed with her for 3 hours now, she is tripping!!! seeing things hearing things. It is beyond disturbing... I am fighting so hard to keep my calm. She started screaming a little while ago about the room moving and why were those pictures all over me???

I now have her in the tv room watching Animal Planet... seems to calm her.

I am at a loss right now...

Thanks everyone.

 

[SRL]

As for the hallucinating... Ihave been laying in bed with her for 3 hours now, she is tripping!!! seeing things hearing things. It is beyond disturbing... I am fighting so hard to keep my calm. She started screaming a little while ago about the room moving and why were those pictures all over me???
right now...

Thanks everyone.

FYI: This is the same kind of thing I have heard from other parents with young children on this medication.

 

[flutterbee]

Oh, T, I'm so sorry. She's just a baby. Your heart must be breaking.

(((hugs)))

 

[Sara PA]

This is the problem with discontinuing (or adding) more than one drug at a time. It's virtually impossible to determine if the problems are being caused by withdrawing the Neurontin or the Geodon if, indeed, it's being caused by withdrawal of either. Then again, it could be caused by the combination of the withdrawal of two medications.

That said, halfing the dose of Geodon isn't exactly gradual weaning. Eliminating 100 mg of Neurontin, a drug which the manufacture was trying to sell in daily doses as high as 4800 mg/day for everything and anything, isn't so drastic.

I have noticed parents reporting that many kids do have a very difficult time getting off antipsychotics. The behaviors displayed during and after the withdrawal period are worse than the behaviors for which the drugs were prescribed. Further, I have noticed that often extreme actions taken by people diagnosed with schizophrenia are often committed when the person "stopped taking his medication" as the newspapers report. Because these people often had no history of such extreme behavior prior to the incident which landed them in the news, I can't help wondering if, for some people, antidepressant withdrawal is a very real problem.

If it were my child, I would increase the Geodon dose to 60 mg or some easy to administer dose (I don't know the size of the pills) between the 80 and 40 for at least two weeks before attempting a decrease again. And I wouldn't start removing it until he was off the Neurontin for at least two weeks.

ETA: Hallucinations as part of withdrawal syndrome are common knowledge for alcoholism and drug abuse but not so commonly known for prescription medications. Hallucinations are a symptom of withdrawal syndrome regardless of what drugs is being removed.

 

[smallworld]

T, with symptoms that bad, you should call the psychiatrist ASAP. You also may need to have her evaluated at a hospital.

Hugs to you.

 

[Steely]

Tototro............how is going today????

The poor little bug. Oh my gosh.

Seriously - I would want a medication wash. This is ridiculous, and you are having WAY too many side effects. I would put her in phosph and insist on a medication wash. When that is complete, only then would I let them add one medication at a time! A medication that is some sort of mood stabilizer that has been proven over and over and over again to have success, like Lithium or Depakote. These medications he has her on, are shots in the dark, B list medications, medications that only some of the time for the patients.

I just don't get why the doctors are prancing around, administering medications to a 6 year olds that are barely studied.........when there are some tried and true medications out there????

I am telling you - Lithium changed my sons life. It was night and day. And why so many docs use it as a last resort, I do not know. I guess because they have to get blood drawn............but in my opinion, that is workable.

Please hang in there.........and let us know how it is going.

 

[Sara PA]

I wouldn't hospitalize a child to do a medication wash unless I had to. Many stay at home mom can provide the care and watchful eye needed to do it better, I believe, than a hospital with rotating staff who don't know the child. The hospital will attempt to do it more quickly than might be beneficial to the hospital under the belief that if anything goes wrong....well, it's a hospital. But that, in my mind, doesn't justify increasing the risk for making the withdrawal process harder. And you can bet the insurance company will push for a quick withdrawal if, indeed, they cover the admission at all.

A child going through medication withdrawal may be a very sick child in the physical sense -- even strange behaviors can be the result of physical changes in the brain. If a child gets withdrawal illness it should be remember that s/he is a sick child and given all the consideration that a child ill with any other illness has. That may include not going to school when the child is most symptomatic.

 

[TerryJ2]

Wow. So sorry.
You've gotten more experienced answers here ... from an observer's point of view it does sound drug related.
I hope things settle down over the weekend.
I love your quote about Carefree gum, by the way!

 

[totoro]

Sorry if my post is garbled... 4 days of little or no sleep!!!

Well because I had read about all of the horrible side affects of Geodon... it says most don't start experience until after 24-48 hours.. which had me questioning her mood. She has been amping up all week, seeing things prior to the medication adjustment. So that is why we don't know what is going on...
She actually got 60mg of Geodon yesterday. I gave her some last night when she started acting weird, I had been reading about withdrawel...

She finally fell asleep around 6ish... I don't know if she is just manic??? having an actual manic episode? But I also feel it is medication related... I am going to let her continue to wean off of the Geodon, we had decreased the Neurontin from 200mg to 100mg over 2 weeks... not much lower I can go.
At this point I am going to wean her off regardless if psychiatrist says just stop it...

Well if all goes well hopefully she will be off of Geodon in a couple of weeks and and only on Lamictal and Prazosin...

If she does horribly we can add back on Abilify, at least we know that works...
What do you do when your child needs and AP but they cause negative side affects? I guese we can add Cogentin.

Thank you so much everyone... it means alot to read you words.
I am going to try and get a few minutes sleep!!!

 

[totoro]

I am ready to let her heal in her own way... thanks Sara. I agree!!! I will fight anyone right now about this point... If she is unstable not doing well, she is getting a break.

When you have your 6yo screaming at you in the dark, "Why is this happening to me" "Why is the room moving? Tell the fairies it's OK to come back" Screaming there is water all over the floor... things all over the room, but won't let me turn on the light... it is all you can do not to help her... the last thing on my mind is "making" her do anything... besides rest and eat.

At this point we can go slowly cutting the Geodon... I'll split them also...

Thanks again

 

[jannie]

Toronto--

Sending great big hugs--Everyone has given you so much advice...I hope you are getting some sleep...You will get through this....I'm sorry she is having such a rough time-

 

[susiestar]

Oh, totoro, I am SOO sorry this is happening to our K!!!

We dealt with hallucinations at several times.

Do I understand that there is some question as to if these are real hallucinations?

If they are not, what are they???

This could be medication related, could be K.

Poor baby, poor mommy and daddy too.

Is there any chance the doctor will consider a 1st line mood stabilizer like lithium? Or have you already tried it?

As for the AP, it is tough to decide. Remember that some of the jerky movements that are a side effect of the AP may stay permanently even after the medication is long gone.

I hate this. Hugs to all of you!!!

Susie

 

[Janna]

T,

I think I told you before that we had disasterous results with Geodon. Vicki (I forget what her name is here, she used to be Jungleland) had her child on Geodon and she, too, had horrible hallucinations and such from the drug.

We started Dylan at 20 mg and it stimulated him. He was talking to everything and anything he came in contact with. The psychiatrist said this would happen, and to up the dose. We went to 40 mg, I saw no benefit and cut the drug immediately.

I'm going to tell you this ~ you are going to have problems relying on the atypicals. One, the ONLY one approved by the FDA for children is Risperdal. None of the others are. Second, they are used for short term mania or whatever. Which means, none of them are going to last long. We had a great 16 months with Dylan on Abilify, constantly going up, up, up in dose until he was slurring, drooling, and everything else from the medication. It was at it's end. So, then what do you do?

There isn't a damn thing you can do.

If you've tried them all, I'd give them a rest. And maybe a medication wash is a good idea. That's what we've done with Dylan and you know, we all see him in a totally different light now.

And to tell ya the truth, I'm sorry I had him on all those drugs. If I could go back, I wouldn't have. In all honesty, 2 out of 29 did something. What a waste.

J

 

[totoro]

Well she slept for a couple of hours this morning... woke talking about her fairy friend... was pretty out of it.
She has basically spent the whole day making me sit in a darkened romm with her off and on... we are searching for her friends from last night.

While I am not trying to encourage her thinking I just sit patiently with her, I tried to explain that her mind and the medications might have brought them out and that I "don't know" if they are real or just real in her mind... I told her they may have only come to help her out last night when her little mind was struggling and very confused...

Everytime I say they may not come back, she starts sobbing. We made a wand and tried to turn a little pewter fairy I gave her for comfort into a real one... didn't work.

She passed out again while we were in the room again. I let her sleep for an hour, now we are watching Shrek on TV and eating.
She is a bit calmer but still very emotional and on the verge of breakdown.

husband is supposed to leave on Monday for a week, now he might change his plans.
I really can not thank you all enough for making me feel better...
I honestly don't know why the doctor's are afraid to Prescribe a MS that requires a blood draw? Yet they will hand out everything else like candy and tell you it is up to you if you want to Difficult Child the medication or not. Very frustrating. I realize he is trying to keep me a part of the "team" but I want some input... and not just add ons.