totoro

Mom? What's a difficult child?
This is psychiatrist's reply-

"Immediately give her cogentin 2 mg, and give it each morning. Drooling,
rash, the fidgety feelings will go away. Please go to local doctor. I cant
treat you from a distance. It is not fair on both of us "

What do I do??? Immediately??? Does that mean take her to the ER??? I am about to put her in bed!!!

I have a new psychiatrist apt at the end of March... I guess I can let pcod know this and ask her to help me until then??? My gosh this is unbelievable, she is one of the top docs in the nation.... I understand her thinking. That difficult child needs help here and right now.

Oh fudge I just feel kind of lost helpless...
 
F

flutterbee

Guest
I don't know what cogentin is. Do you have any on hand? Did she call in a prescription for you?
 

DammitJanet

Well-Known Member
Do you have the cogentin? If so, then I would call the local psychiatrist in the morning and tell them what the other psychiatrist has said and see if they can get you in any faster. If you dont have any cogentin, then I would call your pediatrician and tell them what the psychiatrist has said and see if they will rx it for you until you can get into a psychiatrist.
 

BusynMember

Well-Known Member
I'm cautious. If he put it that way, I'd go to ER. I don't know if a psychiatrist that you don't know wouldn't tell you just to go to ER anyways. If you're talking about an anti-psychotic, my son had reactions to Risperdal and Zyprexa and had to stop taking them. He got very sick from both.
 

totoro

Mom? What's a difficult child?
easy child is sleeping right now and difficult child is up in her bed... I think she will be OK until morning. She has had these same symptoms for a few days... I don't have the cogentin, but I put a call into her pediatrician for a call back asap in the morning.
There is no psychiatrist here in town... Our new one is 2 hours away and we have not met her yet!!!
I just wish she would have said she needs to be off the Risperdal or something more...
I just wonder if the pediatrician. can handle this until the end of March??? DO we wean her off Risperdal and start something else??? Who do I go to now???
 

pepperidge

New Member
when my youngest was having the facial grimaces etc (like smallworld's we weren't sure it was tics or a dystonic reaction) the psychiatrist said to put them on cogentin. It is an anti-Parkison's drug that is used to treat dystonic reactions. If it were me, I would write back to the psychiatrist (or call first thing Chicago time) and ask about decreasing the Risperdal dose immediately to where it was before while you think about next steps. If she had those problems on the lower dose, I might discuss discontinuing it.

My take on it was that (and I forgot which drug it is, have to look back in my notes) I didn't want to start messing around with drugs to treat the side effects of other drugs and we d/c whatever drug was giving the facial issues. HOwever, my child's therapist said that she had seen lots of parkison's type patients and he did not appear to be having a dystonic reaction so maybe that is not what he had. Its hard to tell when the doctor can't observe it.

Calling your pediatrician. urgently in the morning is a good idea.

And I can understand that you are certainly bummed out about not having a good psychiatrist handy.

Could you talk to your pediatrician about an urgent appointment at whatever teaching hospital is closest? Does your local emergency room handle child psychiatric patients? Ours didn't until recently so we would have been transferred three hours away probably. It might be worth finding out what the scoop is there--your pediatrician. ought to know.

hang in there, I am sorry your husband is not around to help.
 

totoro

Mom? What's a difficult child?
Thanks guys... No our local er is not ready to handle these situations they would take her an hour away, which is the Hospital I just talked with that informed me not to take difficult child if we had an emegency!!! They just lost one psychiatrist and are under staffed and told me her care would be sub-par at best!!!
This is part of the reason why I have been frantically trying to hook up with a local psychiatrist months now.
Maybe I will e-mail psychiatrist back with a few questions and let her know our situation again and the pediatrician as well.

I had looked up cogentin before, but I agree why treat negative side effects, if that is what they are??? I would prefer a medication that didn't do this.
I don't mind using it for a short time until we can figure this out...
 

pepperidge

New Member
Totoro

be sure to try to describe the symptoms so that the psychiatrist has a sense of the severity of it. From what you say, it sounds like an issue possibly but not a fullblown out and out dystonic reaction. not that I am anywhere near an expert on it. lol. But being at a distance it must be hard for her to guage the severity of it.

Wish I could help....
 

totoro

Mom? What's a difficult child?
Pepperidge-
I basically told her what difficult child was doing how she was feeling and let her know that she was like before she started taking the medications, but without such extreme violence. I said I didn't know if she was getting worse or not responding to the Risperdal? I didn't want her to think I was freaking out but that I was concerned, that is why her response kind of scared me.
one day at a time...
 

smallworld

Moderator
T, this is our experience and may not mirror yours, but I did want to share it with you. My son ended up being diagnosed by a neurologist, a psychiatrist and our pediatrician as having a dystonic reaction. Risperdal actually treats tics, and the movements the docs saw in my son were alarming and uncontrollable (plus he had a serious staph infection all over his lower face that required antibiotic treatment and caused him to miss 4 days of school). Because Risperdal wasn't honestly helping with my son's mania, we decided to d/c Risperdal and go right for a mood stabilizer instead of using Cogentin long term. That's not to say you shouldn't use Cogentin short term to control the symptoms while you decide your next steps. And your docs may decide to try another AP in place of Risperdal instead of a mood stabilizer (because of your difficult child's hallucinations, it's almost certain she will need an AP as part of her medication combo).

I know your situation with psychiatrists is difficult at this point, but you are going to have to find regular ongoing psychiatric care for your difficult child. She has significant challenges at a young age that require close monitoring and thoughtful treatment. I have to tell you that I am in contact with my kids' psychiatrists every week (and we're no longer in crisis); without this close communication, my kids would not be making the kind of progress they are.

Let us know what the pediatrician says. And definitely call the new psychiatrist to tell her what's going on and let her know you will be available on short notice should an appointment opening occur.
 

Janna

New Member
Yikes. If you're psychiatrist is 2 hours away and you haven't met him yet, who gave you the script for the Risperdal?? Please, not the pediatrician??????????

I have to agree with Smallworld here, T, I would not allow ANYONE other than a PSYCHIATRIST prescribe medications to my children. With that being said, I think you should keep trying to find one closer to you. There is no way you can have a relationship with a psychiatrist 2 hours away. As Smallworld is doing, when Dylan was unstable, we were in there with our psychiatrist every week to two. Now, stable, it's once a month, but no way I could do that with him two hours away.

I know nothing about this rash and stuff, but it sounds really scary. We've had problems with Dylan and his medications in the past, but the psychiatrist is always there. You're asking questions to a psychiatrist that knows nothing about your difficult child.

Pediatricians are good for ear infections and bronchitis. Who diagnosis'ed your difficult child wit Bipolar? If you're working with a pediatrician, I'd get a referral to a psychiatrist ASAP. Bipolar is out of the realm of expertise for any pediatrician.

Janna
 

SRL

Active Member
I believe the prescribing psychiatrist totoro is an out of state doctor that did an evaluation plus initiated medications ans the two hour away one is the one they are scheduled to see. (Two hours away is not uncommon for those who don't live in or near big cities).

totoro, it's very reasonable for any doctor--no matter how "top" they are--to not want to continue ongoing treatment when they can't see their patients on a regular basis. It's becoming more common due to internet and ease of travel but it's a MAJOR liability issue and some doctors have taken huge malpractice hits for it. I'd call your pediatrician first thing in the morning and see if s/he can't intervene to move up the psychiatrist appointment. It usually can be done in crisis or emergency situations but you likely won't be able to make it happen through the receptionist.

FWIW, I was in a similar situation once (different side effects and doctor wasn't working well with us instead of distance) and wound up pulling the medication until we could get hooked up with the doctor. I decided I'd rather deal with the behavioral issues I knew than the side effects I didn't.
 

Fran

Former desparate mom
Are we using the term psychiatrist as psychiatrist or pediatrician? I'm a little unsure.
My son was on cogentin for a few years to prevent complications from haldol.
 

dreamer

New Member
we use this doctor and for us it is 2.5 hours by car. We have used this doctor for 6 years, now, and it actually has turned out better for us than the`local doctor becuz this doctor HAS replied to emergecy calls emails and pages. (our local docs would not even return calls to the ER)
BUT there were a couple times when we had to go to ER and get certain labs etc done or get a docs opinion of something to report to this psychiatrist by phone or fax.

I would not downplay anything tho, and I would be cautious. It does seem that if you are wanting to continue using the respirdal then you will likely have to also use cogentin. It does not sound to me like the respirdal is really doing anything very positive at all, tho, so I am not sure why you would continue to use it. It sounds like the choice at this moment is respirdal PLUS cogentin or neither.
While we have been using this psychiatrist for 6 years, we have always been willing to run at drop of a hat to this psychiatrist even if it meant dragging the other 2 kids with us, and following up with a local ER visit so the further away psychiatrist could have info available as quickly as possible- to ease psychiatrists mind of any situation.
I did not really understand the ER near you, not equipped? Do you mean they do not have an adequete psychiatric hospital? But do they have a lab? Can they do blood draws, assess for possible medication overdoses and serious adverse reactions?
 

totoro

Mom? What's a difficult child?
Sorry I know the soap opera is hard to keep up with!!! I am so stressed with health care!!! Basically-
I have a wonderful Pediatrician, who has been pushing for a local psychiatrist, there are none in the area, we found one in Chicago in November when difficult child was having psychotic episodes and hearing voices and really cycling bad, Pediatrician did not want to start medications without working side by side with a psychiatrist, in the mean time she was pulling every string she could to get us in locally, since then another local psychiatrist has left, and when I say local the closest is an hour away, well Spokane which is 2 hours away has some better facilities available but it is a different state and a farther drive, but that is where I found the psychiatrist who comes highly recemended but was taking apts. months out, so I have one for March 30th.

I just called the Chicago psychiatrist's asst, and she is calling in the Cogentin for us, and at this point in the am I have not heard back from psychiatrist or pediatrician yet... so I will go get the Cogentin and start her on that put a call in to the new psychiatrist in Spokane and beg for mercy keep trying my Pediatrician.

How do they stop you on Risperdal, I read you slowly stop it... I kind of agree with SRL I am willing to go with nothing for awhile until new psychiatrist if we have to. How long does it take to back them off of it?
I agree I think she needs a mood stabilizer as well....I also think we need contact with someone weekly or at least access to someone.
Gosh this is stressful... I am biting my nails.... and did not sleep that great... lots of deep breaths.
Thanks everyone I honestly don't know what I would do without this site.
 

pepperidge

New Member
Janna,

I know you think you live in the boonies, but until recently our nearest psychiatrist was 3 hours away! If she/he is a good one and is only two hours a way, then totoro is fortunate. Totoro is doing what we did, use an out of state psychiatrist with the pediatrician as backup to prescribe emergency medications or whatever. It would be nice to live close to the psychiatrist, but sometimes that just doesn't happen.

Totoro,

hope your pediatrician or someone can do some arm twisting and get you in soon to see the "local" psychiatrist.

Another thought I had is that you may want to try emailing the author of the bipolar child (I think they have a website), say that you appear to have a child with all the markers of early onset bipolar, say you live in rural Idaho and name a few of the closer "big" cities and ask if they can recommend any child psychiatrists knowledgeable about bipolar for you to contact. Never hurts to have a backup plan in place.
 

DammitJanet

Well-Known Member
I can tell you Cory was on Cogentin for a short time to help him with shakes he had due to lithium. It didnt completely remove them so we discontinued both medications. However, it didnt hurt him either.

Hope that eases your mind some.

I can only imagine how nerve wracking it must be to be so isolated from care for your little girl. Do you have any teaching hospitals close to you at all? Im sure you have thought of that though.

Hope the pedi doctor can help while this gets sorted out and also hope the little one settles down some while you go through this. My thoughts are with you.
 
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