yet another PANDAS question

[trubiano]

Hello all! I read often, but post so little these days. My son is in one of his OCD/spacey modes this month. I have been doing the diets, fish oil, vitamins, and PCN for over a year and the tics THANK THE LORD are gone. We just deal with this darn OCD/spacey stuff now. Here are my questions. 1st: His OCD involves doing something that will hurt himself such as, touching a fan while it is running, putting his fingers in the car window and rolling it up, and wanting to open the car door while we are driving. He has been really good and telling me about his feelings and not acting of the impulses, but I'm afraid for when he gets older. Will he be able to control himself and what if these urges turn into hurting someone else? My 2nd question is what are all of you doing for the OCD? Sometimes it is like my son is in a druken confusion. He asks weird questions over and over and is so forgetful. Is there something I'm not giving him that maybe you are that works? I am trying to stay away from the clonidine our doctor keeps trying to push on us. Thank you for any help!! I am so happy I found this site so soon in my son's issues. I know all the support I have gotten has helped him recover.

[Pudgeo]

Hello, I understand how you feel//I sware if my son is not better or showing improvement soon I will get back out the seroquel! I'm serious..I am so tired of the OCD & spaciness!! My son is on .5 ativan in the morning which I was going to try to wean him but the Dr said NO since he is getting IVIG and they don't want to complicate matters more, I think the ativan really helps calm him down...I just don't know..we have been doing bio-med since FEB for PANDAS and there is NO improvement..I think my sons symptoms are worse!! I guess maybe consider the clonidine as short term??? See how much you can stand!!Sarah

[michele]

My son is not spacey but is more hyper. He doesn't miss a thing but just gets so emotional when things don't go his way! He gets very mad and loses control. The Abilify helps with the moodiness and the ADD. It has helped him so much. He doesn't get so fixated anymore on marked likes. The OCD is much better as well as his emotional issues. They are not 100% gone but at least 60% better. That is on three mg a day. Plus he takes the Omnicef. He doesn't tic like before either. When we first went biomedical and started all the supplements he was worse then ever. Now I am seeing improvements in him. I think this PANDAS is really bad and needs medicine to help with the damage done by the episodes. Hopefully the meds are not forever but in the short term it makes a much more happy child and I am much better off too.

 

Michele

[emma1]

Here is how I understand the OCD issue with "bad" thoughts. They (our psychologists) say the child will worry and become anxious over doing something "bad" -- but the chances of them actually following through is very remote. (There is another disorder where the child does follow through -- but those children are generally not upset by the thoughts.) OCD children are generally upset, worried, anxious, etc., by the repetitive "bad" thoughts and the "bad acts" are often totally out of character for the child.

 

I haven't found a complete solution. We are trying CBT -- though it has honestly, for us, been of limited help. We are on PenVK, inositol (1 teaspoon morning and evening), SAM-e, and mag taurate. Unless stress gets high, this keeps everything workable, if not perfect. I also find keeping my daughter physically active and busy helps -- too much free time and there is too much time to think.

[peglem]

My daughter does have a script for valium, 5 mg, as needed for aniety. I don't like to give it very often, but find that valerian root is a nice alternative (non addictive, no problems "coming off"). It promotes gaba and helps my daughter to relax. My daughter does self injure (significantly) or I would never consider benzos and nobody will counsel her (CBT) because she is nonverbal (not non communicative, but they don't know how to communicate with her). So, I'm slowly making progress getting her to self regulate- keeping herself safe, crying when she's upset, instead of herting herself. Try to find stategies and tools your child can use to combat the OCD.

[trubiano]

Thank you emma1! This really makes me feel better. He doesn't act on the thoughts he just keeps telling me over and over he wants to do them, so it helps knowing he shouldn't hurt himself. Where do you get you inositol, is there a brand I should look for?

[trubiano]

My daughter does have a script for valium, 5 mg, as needed for aniety. I don't like to give it very often, but find that valerian root is a nice alternative (non addictive, no problems "coming off"). It promotes gaba and helps my daughter to relax. My daughter does self injure (significantly) or I would never consider benzos and nobody will counsel her (CBT) because she is nonverbal (not non communicative, but they don't know how to communicate with her). So, I'm slowly making progress getting her to self regulate- keeping herself safe, crying when she's upset, instead of herting herself. Try to find stategies and tools your child can use to combat the OCD.

Peglem, another friend of mine had a similar situation with her son hurting himself. She finally gave in and started giving him clonidine and in about a months time he stopped. It helped with the ADD and tics he was having also.

[emma1]

We use the Jarrow brand from iherb. You might also want to check out a book called "What To Do When Your Brain Gets Stuck" by Dawn Huebner. It is a little "too young" for my daughter, but I saw it and thought it would be quite helpful for a younger child.

[Pudgeo]

I agree that meds should be used for PANDAS if all else fails...

We had our 2nd IVIG today and I believe Kaiser will do 2 more for us..but I really feel is my son is still an OCD mess come sept/OCt I will look at seroquel or abilify or I will loose my mind!

We do give my son .5 ativan in the morning. It seems to be the only thing that has ever helped him. We are just keeping it where it is for now and hopefully wean him off soon...Sarah

[trubiano]

Thank you again emma1 ! I placed two of Dawn Huebner's books on hold at our library and will go get them today.

[emma1]

I think the books are helpful. I like the one on anxiety too.

 

Just wanted to say -- I don't know if giving SAM-e to a child is OK (Cherie would know!) -- but I have felt for a while that it has really helped my daughter. A couple of days ago, she was staying with a friend and forgot the SAM-e. Within 24 hours, her negative thoughts returned! I am hoping as she gets back on her schedule, they will go away again -- fingers crossed. She has had a good summer so far -- even with some stressful situations and daily swimming!!

[trubiano]

Hey again! Thank you for the book idea, they are really helping. The best part is it explains OCD in a simple way even my DH understands now! I did have one more question for you. I bought the Inositol and when I looked online to figure out a child's dose all the studies said under 10mg. I am unable to find a dose smaller than 500mg. My son is 7, what dose are you using?