OCD

[emma1]

For those of you with children who have tics and ocd -- does this type of ocd differ from "regular" ocd (that is, when one has ocd but no tics)?

[michele]

I think it is more compulive thoughts and interests. Although some kids I have read about have alot of fears. My son is repetitive in his thoughts.He has to do things the same. For example every light on in the bathroom when getting a shower. Or a light on in his room every night. Lining up his toys. Having to collect every toy to get them all. Interests that are very narrow and all we think and focus and talk about. He gets ideas stuck in his head. I think it is mild OCD. I wonder if it will get worse with age and repeat infections. He loves Webkinz and has to look at them for hours online. He loves Happy Meals for the toys. He loves High School Musical and knows every word and action to every song. We have every Harry Potter book and movie and collect all the characters. It is a little over the top of a normal interest. He goes through them and then moves on to another one. Bugs freak him out. So do pools. Plus the urination frequency is a compulsion. Even the rhythmic tics pressing both sides of his face or back evenly is compulsive. I wonder how it is for other kids with Pandas?

 

 

For those of you with children who have tics and ocd -- does this type of ocd differ from "regular" ocd (that is, when one has ocd but no tics)?

[Chemar]

hi Emma

 

I am not sure if your child has a dx of Tourette, but if so then yes, there are characteristics of the OCD that seems to often occur with TS that are somewhat different from the "classic" obsessions and compulsions, although these can still occur too

 

It was actually an associate of dr Murphy's,who is now resident in New Zealand, who taught us about this while my son was his patient for a year. (He is the doctor I will forever be greatful to as he helped us wean my son off the meds that were hurting him so)

Anyway, for people with TS and OCD there is often overlap between the two so that tics can become OCD like and OCD things can become tics.

That is a simple way of explaining a complex situation, which we were given some very interesting research backup on

 

The OCDs can range from "having to" perform certain actions or say things ritually or a specific number of times until they are "just right", having to "report" their actions and or words, plus the other classic things like "checking to be sure", organizing, and of course also the thoughts, fears, phobias etc etc that occur often with OCD

[faith]

We are not confirmed on the ocd, (we are not pandas) but I see my son exhibit some types of things like the ritual thing chemar mentioned rings a bell, he does have certain things he says after he does something like he has a certain ritual after using the bathroom, has to ask me if he's clean and when I say yes, he'll say "you sure" every time, and if I don't answer correctly we start over again. Like he doesn't like change and likes to do everything like he always does it, for instance has to have two cookies every night for snack, he's not a hand washer but right before he goes to sleep he has to wash his hand really good especially the thumb because he still sucks his thumb while going to sleep. And I notice he always puts his toothbrush down in the same spot across from where the others are, and the teacher notices he erases alot, I think the letter has to be right or he erases it and does it over. I'd say they are minor or mild things, but could drive you mad just the same.

 

Now I am wondering how all this will come into play as we seem to be moving ahead with applying for the 504 and I think they will test him as part of the process. Chemar, do you agree that we should go ahead with the whole testing process, even other things that we do not feel he has like the speech/language part or learning disabilities. I guess it can't hurt to see where he stands, but part of me is afraid to find out. I have all I can do to deal with the TS part and having to confirm that dx as far as school goes. I know it will be for the better, but freaking me all the same...

 

Emma, what are your dd's symptoms, is that aside from the vocal tic you mentioned?

 

Faith

[emma1]

Thanks Chemar. My daughter had sudden tics begin and was tested and has high strep titres, so the doctor suspects PANDAS. As I am now watching her like a hawk (probably not such a good thing), I noticed she was counting steps. When I asked her, she at first evaded, and finally said it just seemed right to have fourteen steps before leaving the room. I've only noticed her doing it a couple of times, but she has been on antibiotics, and during that time I was noticing almost nothing.

 

If the ocd isssues continue, is there a separate treatment plan for that? Is it treated like "regular" ocd?

 

Thanks for any information you can give.

[emma1]

She mostly has what I believe are vocal tics -- sometimes a humming, and sometimes it sounds almost like a repetitive noise. The other thing that I noticed, which I think is ocd-ish, is counting steps. Honestly, I wouldn't have noticed the counting except for the past three months I have been watching her like a hawk. She has gotten extremely good at hiding her tics, etc. She occasionally goes to her room, and plays her ipod a little too loud -- and I am wondering if she is releasing the tics. But for the past three weeks, on antibiotics, all has been, well, really good. I have still noticed a few little things, but, honestly, overall it has been so minor, it has been wonderful. (We are out of antibiotics right now, however, and I am totally stressing!!!!)

[Chemar]

emma

 

Inositol ( a B vitamin) is a very good and safe supp for OCD as is samE or methionine

 

some also find 5HTP (or also tryptophan) helpful but it needs to be used with caution, especially with meds

 

basically things that elevate serotonin help with OCD

[michele]

Naural Lithium Orotate can help stabilize mood swings. I think my son's moods were much better on it. The DAN Dr. gave me suggestions for helping with overproduction of brain endorphins with PANDAS. He said the GF/CF low sugar diet helps the immune system which lowers the endorphin production. TMG helps calm. The taurine delutes the rowdy guys in the brain and the folic acid helps the TMG to work. I am waiting for the GABA Calm orange sublinguals to come in at the health store as it seems like a combination of taurine, and GABA which are both claming and detoxifiers and mood stabilizers. The brain is at war with its white blood cells and nerves which it thinks are strep and we need help with supplements to calm them down to stop the attack and the inflamation. I think this is how he explained it.

Michele

 

For those of you with children who have tics and ocd -- does this type of ocd differ from "regular" ocd (that is, when one has ocd but no tics)?

[michele]

I found this interesting post and thought it applied to your question about OCD and PANDAS treatment. Michele

http://health.groups.yahoo.com/group/PANDA...ort/message/911

 

For those of you with children who have tics and ocd -- does this type of ocd differ from "regular" ocd (that is, when one has ocd but no tics)?

[Dedee]

Chemar,

 

I noticed your statement about the doctor that helped wean your son off of some harmful drugs. Can you tell me if any of those drugs were an SSRI? I am currently trying to take my son off of Celexa. He has been on SSRI's for many years and since I am a nurse I am aware of the dangers of moving to quickly with this. We have decreased his dose twice over the past year by only adding the antibiotic therapy, calcium/mag, fish oil, and a multi-vitamin. He also takes a pro-biotic. He is currently on a very low dose and I think the next step would be to stop it all together, but I am so scared to do this. I took the same medication at one time and believe me it was no fun time when I weaned off it. I can't stand the thought of my child going through that. Right now he is doing better than he ever has been. He is great in school, has good friends, stable moods, etc.. This has all come about since taking out his tonsils and starting the antibiotics. I am just so worried that if I stop the medication I might mess everything up, but I really hate for him to be on this if he doesn't need it. I would love for him to be off all prescription meds. Do you have any suggestions??? Thanks so much.

 

Dedee

[Chemar]

hi Dedee

yes, one of his meds was an SSRI, Luvox, supposedly to help with the OCD

 

he was titrated down from it over a period of 2 weeks.

 

an excellent book on all this, with help in weaning off correctly to avoid the awful withdrawal symptoms that come when these brain drugs are stopped, is "Your Drug May Be Your Problem" by Dr Breggin

http://www.breggin.com/yourdrug.html

 

 

A few days after starting the withdrawal I saw a familiar gleam return to my son's eyes that had been dull and zombie like over that awful year of us foolishly allowing ourselves to be bullied by some docs and a school, and allowing him to be drugged and harmed by it.

I knew that day I was getting my son back and things just kept improving daily

as scary as withdrawal is...........it will never compare with how scary things had become to have my son on those drugs

[emma1]

Chemar, So would you generally advise against all such drugs (sounds like that is what you are saying)? Our doctor called another doctor to consult about my daughter's ocd symptoms. That doctor recommended Paxil. Our doctor told me this, but then advised against it, "unless we find it absolutely necessary." We're a probable PANDAS case, and he said he would feel more comfortable trying different antibiotics to see if they affect symptoms before trying the Paxil. Does that sound right to you?

 

As it is right now, my daughter is now about 6 days off of antibiotics, and her tics/ocd are pretty mild.

[Dedee]

Thanks Chemar for the book suggestion. My son tried Luvox once before he took Celexa and it actually made him much worse. Wasn't long before we were right back in the psychiatrist office and she immediately switched him to Celexa. It made a world of difference for him. At that time there was no other choice, he simply could not function in school or socially. However, now that we know that there is help for PANDAS patients and that he is doing so well, I would like to try other alternatives. I am grateful for the help our psychiatrist gave us but at the same time I wish that she would have offered other avenues as well. Well, we are where we are now by the grace of God and I know we will keep moving forward with the knowledge we have acquired from so many wonderful people. Thanks for your help.

 

Dedee

[emma1]

Does anyone know about safe limits for inositol? I just finished reading a study where they said 18 grams was a safe/effective dose. That seems like so much!

[Chemar]

my son never has taken more than 500mg/day of inositol

 

that was what we were told to use tho I know some have used much more.

 

I seem to recall we had a thread on this once and mrsD gave some excellent info there.

I cant search now but maybe if you try a search on Inositol will bring it up.

 

Cheri