Urgent Question

[L Haven]

Guys, I really need some input. Those of you who posted about PANDAS and self-injury: Did your neurologist/doc ever suggest a locked psychiatric ward for your child? If so, did you agree to it?

 

I really thought I was doing the right thing for my child . . . I had this conviction. But maybe I'm a total jerk and I just never noticed before. Everything in me resists putting my 11 year old in a psych unit; he'd be terrified, especially with the separation anxiety he feels right now.

 

Will you please share your experiences with me? My boy is depressed due to having had PANDAS symptoms for so many months, but he's not suicidal - he's never hurt himself or anyone else. The worst he's done is scratched his arm in frustration.

 

Thank you for replying. I sorta feel like I'm drowning.

 

Lena

[dcmom]

Hi Lena-

 

I am so sorry for what you are going through.

 

If your son hasn't hurt you, himself or anyone else- and he is not threatening to.... why is your doc recommending this? Is it to help him overcome ocd?

 

I would feel the same as you- it would be my last resort. That being said, maybe sometimes it is necessary. Have you seen a psychiatrist with him? What are the major issues that are causing your neuro to suggest this?

 

Is your son on abx? Has he done a steroid burst?

[thereishope]

When my son was doing the things I mentioned in the self-injury thread, I did tell the neurologist about it. A psych ward was never suggested. If it was, I would have refused. But keep in mind my son was 5. It was at that point, my son got a prescription for prednisone.

 

You don't have to admit him. I'm going to be blunt...if he hasn't attempted suicide, they aren't going to force you to admit him.

 

Why is the doctor now suggesting it? Do you think there would be a benefit to admission? And do you have doctors on board agreeing to a PANDAS diagnosis? The answer to that third question is very important because that would determine his treatment once admitted. A lot is taken out of your hands once that road is crossed.

[EAMom]

So your neurologist is suggesting this?? Hmmm. This seems like the kind of thing that should be coming come from a psychiatrist, not a neurologist.

 

What type of meds (abs, psych., etc) and dose is your son on (I think you must have posted this elsewhere)?

 

Is he on full-strength antibiotics? if not do that. And consider stronger antibiotics (azith, augmentin). Sammy (Saving Sammy) was on 2000mg of Augmentin total per day at one point, which is very high dose (even more than full-strength...the highest dose possible for his weight), that was necessary to control his symptoms.

 

Have you tried a steroid burst? Even if you don't need it for a diagnosis it may help with his symptoms.

 

Do you have an appointment to see Dr. Latimer yet? Maybe you could do a phone consult earlier to get the ball rolling (on pred etc.). Have you contacted Dr. Cunningham yet? If your son's symptoms are bad now that would be a good time to get a sample to her.

 

I really feel that with a PANDAS child, a locked psych. ward has real potential to make things a lot worse....esp. if they "don't believe in PANDAS" or if they believe in PANDAS but think it should be treated just like any other case of OCD (with psych. drugs, not abs).

[melanie]

So your neurologist is suggesting this?? Hmmm. This seems like the kind of thing that should be coming come from a psychiatrist, not a neurologist.

 

What type of meds (abs, psych., etc) and dose is your son on (I think you must have posted this elsewhere)?

 

Is he on full-strength antibiotics? if not do that. And consider stronger antibiotics (azith, augmentin). Sammy (Saving Sammy) was on 2000mg of Augmentin total per day at one point, which is very high dose (even more than full-strength...the highest dose possible for his weight), that was necessary to control his symptoms.

 

Have you tried a steroid burst? Even if you don't need it for a diagnosis it may help with his symptoms.

 

Do you have an appointment to see Dr. Latimer yet? Maybe you could do a phone consult earlier to get the ball rolling (on pred etc.). Have you contacted Dr. Cunningham yet? If your son's symptoms are bad now that would be a good time to get a sample to her.

 

I really feel that with a PANDAS child, a locked psych. ward has real potential to make things a lot worse....esp. if they "don't believe in PANDAS" or if they believe in PANDAS but think it should be treated just like any other case of OCD (with psych. drugs, not abs).

 

 

 

Have you tried the agencys in your area In NJ we have a crisis managment cant think of the name maybe someone will know. a LOCAL Psych will know , you can call them when things are unmanagable and they come to your house and help difuse the child untill ....They were a great resource for me Im leaving for work so I cant find the name . I know its a crisis team They want to do everything to keep the kids in the home .i would even call them and they would talk to me when I needed some calming.It will get better

 

Melanie

[michele]

Our CNS psych suggested bringing Andrew to the ER when he was having alot of trouble with medicine adjustment and rage. I hesitated to do this because once they are in the hospitals care you have little control over how they will treat them and with what. Eventually I upped his meds on my own because the psych was just not getting the impact of we were dealing with and was slowly raising them and he was having a drastic inbalance from the old to the new amounts. We went from 15 mg Abilify a day to .25 Risperdal twice a day. She wanted to do it in baby steps.We needed help and fast, he was breaking things and kicking holes and screaming and a real mess! Only issue is we are going to run out of meds too soon. I go back next week and I hope at that time to get her to agree to the 1 mg twice a day. Two other Dr's had written it for that amount in he past but we had decided to stay with the Abilify and up it. She wanted to go slow and add .25 three times a day. She suggested upping the night time dose to carry over to AM. We are starting with a new Dr. in her office next week. She just couldn't get his meds right bu she tried. She was a CNS and maybe we just needed more experience with a psychiatrist who deals more with ASD. The meds are really difficult to get right with these kids. They don't respond typically. Try to work it out at home if you can. Try your local MRDD. They have behaviorist who can come out and work with you at home. They are trained in working with difficult people.

 

So your neurologist is suggesting this?? Hmmm. This seems like the kind of thing that should be coming come from a psychiatrist, not a neurologist.

 

What type of meds (abs, psych., etc) and dose is your son on (I think you must have posted this elsewhere)?

 

Is he on full-strength antibiotics? if not do that. And consider stronger antibiotics (azith, augmentin). Sammy (Saving Sammy) was on 2000mg of Augmentin total per day at one point, which is very high dose (even more than full-strength...the highest dose possible for his weight), that was necessary to control his symptoms.

 

Have you tried a steroid burst? Even if you don't need it for a diagnosis it may help with his symptoms.

 

Do you have an appointment to see Dr. Latimer yet? Maybe you could do a phone consult earlier to get the ball rolling (on pred etc.). Have you contacted Dr. Cunningham yet? If your son's symptoms are bad now that would be a good time to get a sample to her.

 

I really feel that with a PANDAS child, a locked psych. ward has real potential to make things a lot worse....esp. if they "don't believe in PANDAS" or if they believe in PANDAS but think it should be treated just like any other case of OCD (with psych. drugs, not abs).

 

 

 

Have you tried the agencys in your area In NJ we have a crisis managment cant think of the name maybe someone will know. a LOCAL Psych will know , you can call them when things are unmanagable and they come to your house and help difuse the child untill ....They were a great resource for me Im leaving for work so I cant find the name . I know its a crisis team They want to do everything to keep the kids in the home .i would even call them and they would talk to me when I needed some calming.It will get better

 

Melanie

[colleenrn]

Lena,

I am so sorry for what you are going through. From what you described, your child definitely does not require hospitalization. It is very odd that your neurologist even suggested it. IMO it would only make things worse.

What meds is he on right now?

Colleen

[L Haven]

Hi dcMom - I really don't know why he's suggesting it. My son has PANDAS, but not OCD. He has the ticcing/motor movement problems. He is depressed about having been ill, but he is on antidepressants, and is thriving in school. He laughs frequently, and looks forward to things like a family vacation. His neurologist has been handling his medication, but we are taking him to a psychiatrist.

 

We've just started abx (I think that means antibiotic treatment, yes?), and I don't even know what a steroid burst is. No one has ever mentioned it to me, and he's been diagnosed for 6 years.

[colleenrn]

What antibiotics and at what dose? I am asking b/c a lot of times these children are given ineffective antibiotics or doses that are too low.

Colleen

[L Haven]

Thanks, Vickie, that's good wisdom. It may be that not all of the docs agree with the PANDAS diagnoses. I honestly have no idea why he's recommending it. In the Hospital's extensive website about the locked unit, they don't even mention PANDAS or Tourette's, aspies . . . among the listed conditions/diseases. What was the prednisone for? In 6 years my neuro has never mentioned steroids. And we've had IVIG!

I'd feel better if I thought it WOULD have benefits; in fact I think it would absolutely terrify him, and he'd feel very betrayed.

[L Haven]

Hi Colleen,

Penicillin, 1000 mg a day. Does that make sense to you?

 

Thank you - I value your input - from all of you!

 

Lena

[L Haven]

Right now he is on (and has been for almost 2 years):

 

Lorazepam, 2 mg a day

Orap (shudder; this is a big gun of a drug, we agreed to it after IVIG didn't help), 4 mg a day (titrated up from 2 mg a day)

Bupropion (400 mg a day) for depression. This was just upped from 300 mg.

 

What do you think, Colleen?

 

Lena

[thereishope]

On this forum, a steroid burst is used a lot of times as a tool to see if IVIG may work. In the case of my son, the neurologist gave it in hopes that it would bring down some of the swelling on the basal ganglia and (this part is my opinion) to perhaps weaken his immune system to lower antibodies. For my son it was not used as a precursor to possible IVIG.

 

Some background, my son received the prednisone 5 days after a + strep test. We had seen some improvement by that point the first time he had strep. Couple that with talks of going to heaven and absolutely no eating, everyone was at their wits ends of what to do.

 

He was given a 5 day course of prednisone (the length of time varies...some kids get a month). I saw my son's behvaior plateau by day 4 (after 3 doses in his system). Then I saw slow improevement. He eventually went back to 100% himself over the course a months.

 

I feel like I have to add a clause here. Every child in this forum is different. Some haven't seen improvemnt that fast. Some don't see it until after they have finished the steroid, some kids' behaviors come back after the steroid wears off. I just don't want to give the impression like a 5 day steroid burst a miracle. I want to give hope, but not false hope.

 

I still wonder why he's suggesting admision. Perhaps he is in over his head. Oh....my neurologist was the one who gave the steroid. Who ordered the IVIG? Are they still in the picture?

 

 

Thanks, Vickie, that's good wisdom. It may be that not all of the docs agree with the PANDAS diagnoses. I honestly have no idea why he's recommending it. In the Hospital's extensive website about the locked unit, they don't even mention PANDAS or Tourette's, aspies . . . among the listed conditions/diseases. What was the prednisone for? In 6 years my neuro has never mentioned steroids. And we've had IVIG!

I'd feel better if I thought it WOULD have benefits; in fact I think it would absolutely terrify him, and he'd feel very betrayed.

[peglem]

Here's what I'm wondering. With you mentioning recent increases in medications, I'm thinking that's because you aren't seeing improvements at lower doses...so, could your neurologist be thinking that he'd like to re-evaluate your son when he is not medicated? I can see a case here for doing that, especially if he is uncertain whether some of your son's problems may be caused by the medications. Of course, I'm just speculating...I think you need to ask your neurologist directly what his reasoning is. In your post description, you wrote "hospitalization or else" Or else what?

 

If you feel like you're being coerced into doing something w/o understanding why- maybe you need to seek out a new neurologist?

[colleenrn]

Is he on the penicillin prophylactically? When did he last test positive for strep? Penicillin sometimes does not erradicate strep. Yes, it kills strep in a test tube, but not in the body. Sometimes children with PANDAS do not react well to the three medications he is on. If it were me, I would switch his antibiotics asap to a treatment dose of Zithromax. If any of the strep is intracellular (commom reason for penicillin to not work on strep) it will get to the strep. You could also add Ibuprofen, which decreases the inflammation in the brain. If he is 11, he could take 200-400mg every 6 hours. You may want to try that for a week and see if that helps. The steroids are used to decrease brain inflammation. That is something you should seriously consider. Type in steroids in the search box and there is a lot of info here b/c a lot of children have benefited from the steroids.

 

I already commented on the hospitalization, but again, I would definitely not even consider that.

 

Colleen