PANDAS Questions

[sandree]

Hi,

 

We are new to the idea of PANDAS. My daughter has been doing a biomedical program for 18 months for aspergers and sensory problems but she developed OCD along the way and it is just out of control. We just started with a new nutritionist who asked us to do the strep culture and DNASE test. Haven't gotten the results yet. I have a question about my son though. He has been sick - threw up a few nights ago then seemed OK. Then woke with a sore throat and bad congestion - next day said he was OK. But his chronic eczema and congestion are bad. I am now wondering if he might have strep. Would his strep affect my daughter? Her really bad OCD started about a month ago when my son had a bout with what looked like a sinus infection but perhaps it was strep? My daughter does not get obvious sickness - just this extreme OCD and sensory sensitivities etc. She is so bad right now - I am wondering if I should have my son tested for strep. Sorry - tired and not sure I am making sense. The OCD is so hard to live with.

 

Also - our nutritionist suggested 5-HTP. How much do people take? She suggested taking a small amount several times a day. Just wondering how high I can go with it...

 

Thanks so much, Sandy

 

Sandy

[ajcire]

I don't know the answer to your other questions but my dr. just started my son on 5hpt. He is 6 years old. He had told me to use 25mg but I couldn't find it any smaller than 50mg. When I called to ask he told me to go to the 50 as he usually ends up upping it anyway. I have a feeling that the 50 is not doing much for my son right now but I am going to hold at it. He told me to give it to him one time a day before bedtime. He said to just keep an eye out for grogginess but my son is not affected at all. One reason I was putting him on it was to help with anxiety he has about going to bed. Some things imply I can be upping it safely a lot but others contradict it so I don't know what is safe.

 

I do know that when my daughter has strep, the exposure to it affects my son. He gets strep but with no standard symptoms, just a positive culture.

 

 

 

Hi,

 

We are new to the idea of PANDAS. My daughter has been doing a biomedical program for 18 months for aspergers and sensory problems but she developed OCD along the way and it is just out of control. We just started with a new nutritionist who asked us to do the strep culture and DNASE test. Haven't gotten the results yet. I have a question about my son though. He has been sick - threw up a few nights ago then seemed OK. Then woke with a sore throat and bad congestion - next day said he was OK. But his chronic eczema and congestion are bad. I am now wondering if he might have strep. Would his strep affect my daughter? Her really bad OCD started about a month ago when my son had a bout with what looked like a sinus infection but perhaps it was strep? My daughter does not get obvious sickness - just this extreme OCD and sensory sensitivities etc. She is so bad right now - I am wondering if I should have my son tested for strep. Sorry - tired and not sure I am making sense. The OCD is so hard to live with.

 

Also - our nutritionist suggested 5-HTP. How much do people take? She suggested taking a small amount several times a day. Just wondering how high I can go with it...

 

Thanks so much, Sandy

 

Sandy

[amy s]

Hi,

 

We are new to the idea of PANDAS. My daughter has been doing a biomedical program for 18 months for aspergers and sensory problems but she developed OCD along the way and it is just out of control. We just started with a new nutritionist who asked us to do the strep culture and DNASE test. Haven't gotten the results yet. I have a question about my son though. He has been sick - threw up a few nights ago then seemed OK. Then woke with a sore throat and bad congestion - next day said he was OK. But his chronic eczema and congestion are bad. I am now wondering if he might have strep. Would his strep affect my daughter? Her really bad OCD started about a month ago when my son had a bout with what looked like a sinus infection but perhaps it was strep? My daughter does not get obvious sickness - just this extreme OCD and sensory sensitivities etc. She is so bad right now - I am wondering if I should have my son tested for strep. Sorry - tired and not sure I am making sense. The OCD is so hard to live with.

 

Also - our nutritionist suggested 5-HTP. How much do people take? She suggested taking a small amount several times a day. Just wondering how high I can go with it...

 

Thanks so much, Sandy

 

Sandy

 

 

Well, I don't think it would hurt anything to have your son tested for strep as well. Yes, if he had strep it could affect your dd. Congestion USUALLY is not something that goes along with strep, unless you have something viral going at the same time, which is entirely possible. But yes strept could be in the sinuses. I don't know the answers to the other questions. My child does not take 5-HTP. Definately we here understand how hard the ocd is to live with. Hang in there and good luck.

regards,

amy s

[sandree]

Well - I just started my daughter on the 5-HTP and I gave her 25mg 3 times throughout the day with some inositol. Wow - she is looking so much better!

 

Sandy

[ajcire]

Where did you find the 5htp in 25mg?

 

 

 

 

Well - I just started my daughter on the 5-HTP and I gave her 25mg 3 times throughout the day with some inositol. Wow - she is looking so much better!

 

Sandy

[sandree]

I buy the empty capsules and divide the 50mg cap into 2 capsules.

 

I spoke too soon. She had a very bad day yesterday. Her throat culture was negative - still waiting for the other test.

 

Sandy

 

 

Where did you find the 5htp in 25mg?

 

 

 

 

Well - I just started my daughter on the 5-HTP and I gave her 25mg 3 times throughout the day with some inositol. Wow - she is looking so much better!

 

Sandy

[ajcire]

Thanks, my ds won't swallow them so making up smaller ones won't help. I am using the 50 like the dr. said I could but just once a day at night. Honestly, I am not seeing anything and it most definitely is not making him drowsy like the dr. said it might.

 

I buy the empty capsules and divide the 50mg cap into 2 capsules.

 

I spoke too soon. She had a very bad day yesterday. Her throat culture was negative - still waiting for the other test.

 

Sandy

 

 

Where did you find the 5htp in 25mg?

 

 

 

 

Well - I just started my daughter on the 5-HTP and I gave her 25mg 3 times throughout the day with some inositol. Wow - she is looking so much better!

 

Sandy

[sandree]

Well - a little better day yesterday. Erica, we are on so many supplements that it is sometimes hard to tell which one is making a difference. I have been doing a biomedical program with Amy Yasko for aspergers for over a year. It was going pretty well but recently she really developed this OCD so intensely. So we are checking out the PANDAS. But her good days and bad days could be due to other supplement changes we are making. We also added inositol with the 5 HTP. Sometimes it is just very confusing(:

 

Sandy

[Darla]

My son has had luck with inositol for his ocd. It definately helped him. I tried it and took him off and then put him back on. The only other thing he was taking was Intrakid Vitamins, and I know that wasn't doing anything really. It was the inositol. I started him off with 1/2 tspn, then increased it to 1 teaspoon. That seemed to be enough for him. I would definately think about getting some antibiotics, i hear sometimes these kids can react to other types of virus's. Its the antibodies being signaled to attack and thats when they have these reactions. IF it's pandas. My son just happend to get strep and before this week I didn't know what to do to help him with his tics and ocd and anxiety. He had two really bad nights where he was off the charts and freaking out then he went on azith from Wenesday of last week until saturday. I don't know what happened because as of yesterday, I've seen no tics, no ocd and he is happy and relaxed. Im not sure ....is this what pandas does?? So maybe antibiotics would help. I hope she gets better soon. We have a neuro appt tomorrow and of course he has no symptoms... its a good thing, but I hope they don't blow me off.

 

Well - a little better day yesterday. Erica, we are on so many supplements that it is sometimes hard to tell which one is making a difference. I have been doing a biomedical program with Amy Yasko for aspergers for over a year. It was going pretty well but recently she really developed this OCD so intensely. So we are checking out the PANDAS. But her good days and bad days could be due to other supplement changes we are making. We also added inositol with the 5 HTP. Sometimes it is just very confusing(:

 

Sandy

[sandree]

We got our test results and the throat culture and DNASE test were both negative. In fact, the DNASE test showed levels appropriate for a pre-schooler and my daughter is a teenager. I am confused. We are going to the psychologist tomorrow and may talk about medication. She really needs some help at this point. Since she also has aspergers syndrome, that plays into it too, I think.

 

Sandy