Long post - seeking suggestions

[Guest guest]

My son's OCD has flared up again and I'm really down about it. I'm going to post

a history here as I know there are many with experience and intelligence, not to

mention empathy out there. I'm really sad because right before Christmas he was

starting to visit friends again and do other things – really showing a lot of

progress. What I really need is suggestions from anyone with experience with

their own kid going through this and what you think might work and why. It just

seems like so much experimentation right now. I've consulted the experts, with

varying opinions as to meds. Is this typical to have to try so many meds?

Summer of 2008 – sudden onset OCD. Totally different child within a week. It is

the germ phobia kind and he is unable to go outside of home without extreme

stress. Started ERP therapy and Zoloft

- He makes progress rapidly so that he was almost normal within months .

- After 6 months, he shows signs of not caring about anything, worsening ADHD,

easily irritated. Took him out of school to home school as the administrators

told me he was faking OCD to get attention or something and they kept giving him

lunch detention for impulsive behavior. He was becoming depressed and

irritatable.

- At 8 months he is weaned from Zoloft as OCD symptoms are almost nil

- At one year, OCD comes back worse than before. Within weeks he is doing hour

long ritual s, hardly eating, raging anger, not able to tolerate anyone being

around him. Before this my son was a sweet, funny, loving child. He was on the

mild end of ADHD. He never raged and he would cry when distressed, could get a

little mad, but on the mild end and he would get over it quickly.

- Ended up in Psych. Hospital which he hated and they told us they could do

nothing for him as far as improving him. We took him out after 2 days because he

was so distressed - they would not allow him to clean and the nurse gave me a

long sermon how his problem was my " lack of discipline. " I was so stunned I

couldn't even answer her.

- Started on Luvox and Clonazepam by a new psychiatrist and ERP therapy

continues – slow improvement

- IVIG treatment for PANDAS diagnosis after 3 months

- OCD improves more rapidly over next 2 months. Making great prorgess. Raging

anger continues – about one episode a day over OCD issues

- Reduce Luvox and Clonozapam and his anger decreases some

- Christmas break his siblings visit on college break and after one week his OCD

begins to increase

- Ten days ago –visited new psychiatrist (#3). Said Luvox and Clonazepam were

causing his anger, shutting down his executive function, increasing ADHD and

depression which he said he had. This new guy used to be a pediatrician and has

worked in mental hospitals with children. He is also an ADHD expert, with much

experience working with these kid. Although he acknowledges my son could very

well have PANDAS, he said there is probably no medical cure for this and we need

to treat the OCD, ADHD, depression.

- Put on Cymbalta (an SNRI which raises levels of serotonin and norepinephrine

and to a lesser level dopamine). Weaned from Clonazepam in one week. Put on

schedule to wean from Luvox in 3 weeks.

- OCD continues to worsen. After one week, anger worsens with raging temper at

times. Called psychiatrist yesterday. Told us to stop Luvox as it may be

interfering with Cymbalta and put him on Benadryl around the clock.

- At this point his OCD manifests as constantly asking me to " clean. " I mean

every second, no pause in between. If I don't answer quickly enough, he has to

add ritual such as hand movements and if he still perceives my answer of " yes "

is " wrong " he can rage, as in throwing things, kicking the wall, banging his

head, hitting me. This asking me if all is clean,began as a quick short cut for

him to cut out cleaning rituals. He had been cutting down on needing to ask me,

but at Christmas it began to increase. If I don't answer, he gets very angry and

I'm afraid he will hurt himself or others. How does this happen? Well, when you

have other siblings in the house and you want to keep it peaceful, i.e. keep him

from raging. Also, I'm afraid he will hurt himself as he has threatened and

even tried a couple of times.

- Benadryl makes him a bit calmer and he naps a couple of hours after his dose,

but during waking hours his " Cleaning " requests remain constant.

- I called a family friend who is a physician and he thought maybe he should

stay on Clonazepam while he makes the switch to Cymbalta, that it was too much

to stop that, plus the Luvox. The psychiatrist had told me the next step is to

hospitalize my son while he makes the med changes. I really think it would be

harsh on him to do so. There just isn't a good local place to put him.

- So I gave him a dose of Clonazepam this morning, plus the Benadryl. He still

kept up the questioning, but a little less, and he said he felt a little better.

Currently he seems manageable on this combination, but it is not a long term

solution to keep on Benadryl or to have questions continue.

Current Options:

Stay on Cymbalta. Add Risperidone (which is a mood stabilizer and in the same

class of drugs as Sammy, the boy with PANDAS in the book) right now (the

psychiatrist said was a possibility.) It takes 4-6 weeks to be effective. Or

stay on Cymbalta, see how he does, and add Risperdone if necessary later.

Get off Cymbalta and try just Risperdone (not suggested by psychiatrist).

Stay on Cymbalta and add an ADHD drug if necessary (as psychiatrist suggested )

once the Cymbalta starts working in a few weeks.

Stay on Cymbalta, go back on the Clonazepam until he is stable on the

Cymbalta, then slowly wean from Clonazepam (psychiatrist has said to stay away

from Clonazepam but I don't know, because it calms him a little now, and it will

take weeks for the Cymbalta to work, if it does at all.)

Anita