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As many of you know, my daughter has strep induced symptoms that have been largely under control. Recently, she got a virus, and went on stronger antibiotics because of increased symptoms. Now, her OCD has returned (in full force), and the Pen VK is having minimal effects. What do y'all do? We need some help! Should I take her to a different doctor? If so, what would he do? I am very concerned about having her on meds (as I know many have very bad side effects) but she is miserable right now. Ideas of what to do would be so appreciated.

 

We have cleaned up the diet, are using Pen VK, 1 gram of Inositol, and probiotics, as well as epsom salt foot baths (she hated the regular baths). All tics are gone, and the ocd is not noticeable even to me (in fact, she says the OCD involves thoughts that keep her from enjoying the moment). She does appear a little spacey lately (kind of an ADD effect).

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((((Emma))))

 

OCD has always been a much bigger issue for my son than his tics. and i know how hard it is as a mom to see your kid struggle with it

 

we used supplements after having tried meds (so sorry I didnt follow my 'dont want to medicate' instinct on that....but we had docs and school pushing the meds and a child who was having serious onset symptoms and needed help! <_<

 

my son was given luvox for the OCD (and was also on haldol at the time for the TS.)

the side effects were horrid and serious for my son

and if anything, his OCD-tic interactivity, where they kinda feed off each other, got worse!!

 

but the supps really did make a positive difference and tho he only uses inositol when he feels he needs it now, he benfitted from low dose 5HTP (he got 50mg at bedtime each night) and 500 mg inositol each morning. he also had 500 mg methionine with that, tho some people benefit more from the samE form

 

an important thing re 5HTP...it is part of the biosynthesis of serotonin and can have different effects on different people and should not ever be taken along with meds or supps that increase serotonin without physician supervision. my son found it helpful. my husband said it made him edgy. so do discuss with a doc on that for a child especially. My son was almost 12 when he went on it.

 

the PANDAS parents would know more re the antibiotic side, but freom what I have gathered zithromax aka azithromycin is most (?) effective

 

hope you find the answers you need to help your daughter

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Melatolin seemed to help Gianna with her OCD symptoms. She only displayed them for a short time and every once in a while she told me about some bad thoughts she was having. Chemar can shed some light on exactly how it works to help. Its too overwhelming for me. It is all natural though and it was the first thing our neuro suggested to give my daughter. Not for her tics but because she was an acrabat when she slept. The benefits were more than I thought. I give it to her 20 minutes before bed and it puts her right out. It does not make her drowsy (like medication) but just relaxes her. (I take it myslef) I could stay up all night after taking it, in other words its not strong.

We have 3mg tablets, I cut them in half and give her a half.

If you decide to try I would cut the tab in fours andsee how she does, then increase.

Lastly it takes a good week or so to build up in your body. Its a wonderful thing that melatolin.

 

There is also the natural calm or kids calm that may work, but I do not know the effect they would have on OCD...someone else would have to comment there. Melatolin works for us so I have become to STICK with something that works instead of trying something new.

Goodluck and I do hope it all passes quickly for you.

 

You can buy the melatolin anywhere. Just make sure you do not get the capsule one...you wouldn't be able to cut it.

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hi Wendy

 

melatonin is normally produced in humans by the pineal gland. it needs darkness to work properly under normal secretion by our pineals, but because of our modern world of lights everywhere (even those green LEDs that glow) we dont make enough of it most of the time anymore.

 

so the supplemental form is often excellent to help with sleep issues.....

plus, as it is "related" to serotonin in the biosynthetic pathway from tryptophan, and 5HTP, which is likely where something is helping your daughter's OCD from it.

 

 

an important thing on doseage with melatonin is that for some people very tiny amounts produce the best effect, while more has an "edge" that actually causes restlessness and then grogginess. I cant take more than 300 MICROgrams, maximum 600 if really needed, and my son the same, while my husband needs a much higher dose at 1-3 MILIgrams

 

some people also use melatonin for jet lag

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i added it to our 101 threads but also wanted to mention here that we have some useful websites listed in the OCD forum at ACN/Latitudes, that include info on CBT Cognitive Behavioral Therapy

It REALLY helped my son very much. Find a caring psychologist trained well to help with it, and it can really help with OCD coping skills

 

http://www.latitudes.org/forums/index.php?showtopic=1963

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Thanks so much for the empathy and the advice. I am just in shock -- I thought she was doing so well. I wouldn't have know anything was wrong if she hadn't finally come out and told me!!! I thought perhaps she was having symptoms of ADD -- but it turns out the OCD is keeping her mind occupied!

 

I do wonder how the strep figures into all of this. . .but I am going to try your suggestions.

 

Thank you so very, very much.

 

PS If you have brands of the melatonin and the 5HTP, I would so appreciate that info.

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Emma, I spoke to a mom who is the president of our local Torettes Association. She told me it is the OCD smptoms that cause the worse trouble for our kids. It even brings out the ADD because they get stuck on thoughts. My Andrew is so compulsive about his interests. It can drive me buggy. He talks endlessly about those Webkinz and movies. Eventually I break down and buy the things because I feel sorry for him he can't stop thinking about them. The sad part is once he gets it he is onto something else! I found he is somewhat better on the Omncef. He doesn't have the horrible urge to pee constantly he used to get. Also I think it is the Abilify helping him but he gets over things easier now. He used to carry on for hours when he didn't get things his way. Now he gets mad, whines, and then gets over it! He is so much easier to handle. For the first time in a long time I can say he is a good boy! We traveled 29 hours by car to Florida for spring break and he was wonderful! Talk to your neurologist about the OCD.

 

Michele

 

Thanks so much for the empathy and the advice. I am just in shock -- I thought she was doing so well. I wouldn't have know anything was wrong if she hadn't finally come out and told me!!! I thought perhaps she was having symptoms of ADD -- but it turns out the OCD is keeping her mind occupied!

 

I do wonder how the strep figures into all of this. . .but I am going to try your suggestions.

 

Thank you so very, very much.

 

PS If you have brands of the melatonin and the 5HTP, I would so appreciate that info.

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Thanks for the info, Michele. The doctor has prescribed a week of zithromax (I was asking for omniseph, but he felt zithromax would be better.) I am not sure what we do if it works, though. Do we stay on the zithromax or go back to the Pen VK? I hope I have that problem, though (because that means she is better!).

 

I also picked up the 5HPT and the melatonin today, but am conflicted (I want to start them all, but I know I need to spread them out.)

 

If anyone has had a child do Cognitive Behavior Therapy, I would love to know about the experience. Is it a long term thing (weeks, months, years)?

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I have tried 1 gram per day. I am thinking of adding 50 mg 5HTP to it to see if I get better results. The studies that show inositol helps ocd used really high doses -- 18 grams!!!!!! As I said, before Spring Break, everything was pretty good --- and now not so good -- I thought it was helping.

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Great that they gave you Zithromax. People say it works well because it has an immune modulating quality. I have never found a Dr. in Ohio who would prescribe it for kids. They said there is a midwest resiliance being found to it. I just know Omnicef has helped him and he has had a good three months while on it. He has been exposed to strep numerous times and never had a PANDAS episode like we had last fall while on the pen vk. It just didn't work well enough for him.

 

I have not tried Inositol. I did 5HTP and GABA Calm. He started getting major attention issues on the 5HTP. I bought the Inositol but returned it not knowing what I was doing with it. I was not sure of dosage etc. I also tried ADDED Attention but both my kids on it seemed foggy. The guys at the Nutrition stores were no help so I got discouraged about the supplements. We are only taking vitamins and Omnicef and Abilify now.

 

Anyone elses kids afraid of things? For example while at the beach and pool he is very afraid to get in past the step where he can't touch. He won't use rafts etc. Why the fears and how do you overcome them? Will he ever take the training wheels off the bike? Is this part of the OCD?

 

 

 

Michele

 

I have tried 1 gram per day. I am thinking of adding 50 mg 5HTP to it to see if I get better results. The studies that show inositol helps ocd used really high doses -- 18 grams!!!!!! As I said, before Spring Break, everything was pretty good --- and now not so good -- I thought it was helping.
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Hi Michele

 

the 5HTP can make some edgy and restless, but Inositol is in the B vitamin group (vitB8) and is generally very very well tolerated. We started at the lowest dose Inositol (500mg) and found we did not need to go higher

 

 

Hi Emma, glad you got the zith as we really do hear good reports on it

Also hope you saw Claire's note re the timing of the probiotic (Hi Claire :huh: ) cos otherwise the antibiotic just destroys the probiotic. Three hours in between is what I have been told

 

IMO it would be best to do the antibiotic first before adding any new supps so that you can more clearly define which is doing what

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Again, thanks for all the advice (I sure need it!) Regarding the probiotic, I have been giving Culturelle 3-4 hours after the antibiotic. Has anyone used it -- I am wondering if one, once a day, is sufficient.

 

Regarding the fears, I have done a lot of reading on ocd, and my best guess is that they are related to the ocd, especially if they seem irrational. Some children are just more naturally cautious and careful -- that can just be their personality. They may just not have the confidence to try new or different things. But if, for instance, someone who is a good swimmer (or just loves the beach/pool), suddenly decides he/she is afraid of the water, that could be a sign of ocd.

 

I know I need to go slow. That has been my greatest challenge. I read the boards, and I know you need to change one thing at a time, and then wait to evaluate results. But when my child is having issues, it is so hard for me to do this. But I am going to try the zithromax and see what happens. (I may have to hide the 5HTP from me though!)

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