"Brain nutrients" for PANDAS recovery period?

[Mike]

http://www.adhd.com.au/PANDAS.htm

 

"Based on evidence that there is a recovery period (as the GABHS antibodies reduce to normal) after the strep infection is over, we hypothesise that helping the brain recover with nutrients may reduce vulnerability to further damage by the strep antibodies. This is a commonsense approach to a medical problem with no proven medical solutions as yet. "

 

What nutrients are they referring to? My son has now tested negative for strep so the Azith must have worked to get rid of it. We did the 48 hr culture and asked for the 72 but not sure if they will do it. We have extra Keflex left over since we changed medication mid stride. Should I still give him a low dosage to help? Maybe 1 a day instead of 3? They are 500 mg each. We got some acidophilus (sp?) capsules since he doesn't like the taste in milk, but I am not sure what other probiotics will help and doubt those are the brain nutrients they are referring to. Any help greatly appreciated as I feel my son is most likely in this recovery period. Yesterday he hardly ticced at all and by that I mean maybe 10x max all day except for bedtime which picked up a bit. But when they say "wax and wane" I do not know if that is usually a daily thing or a longer period of waxing and waning.

[Laurensmom]

I have attempted to find specifics and can't sorry. But, I would imagine that the article may be generalizing? Perhaps good old fashioned healthy eating is what is being suggested? And, it can't hurt to take a good childrens multi-vitamin.

 

You may get more comprehensive answers, but themz my .02.

 

Also there is some good info here:

 

http://www.worrywisekids.org/newsletter/12_05.html

 

Best wishes, it's wonderful that your son was able to get the help he needed.

[Chemar]

I tend to agree this is likely referring to good nutrition along with immuno boosting supps, antioxidants and phytonutrients etc

[kim]

And Essential Fatty Acids!

[Chemar]

yep

[Dedee]

I have generally heard that Omega 3 fatty acids are nutrient rich "brain food". There are several different forms and I remember that Chemar has posted certain ones being better tolerated than others. My son doesn't take any as of yet.

 

Dedee

[Mike]

I tend to agree this is likely referring to good nutrition along with immuno boosting supps, antioxidants and phytonutrients etc

 

What I don't really understand is why I would want to boost the immune system, when it is the immune system that is believed to be causing the damage with PANDAS. Right now I think my son has Candida as well with all the antibiotics, so I have started with acidophilus tabs and I threw in a daily Omega 3. I was thinking of going by the Vitamin Shoppe today to get a more comprehensive probiotic. I am going to stop with the antibiotics now since I was giving him extra Keflex from his other prescription. I don't know much but this one looked good to me.

 

http://www.vitaminshoppe.com/store/en/brow....jsp?id=VS-2164

 

I also want to try something that helps with anxiety.

 

 

All opinions welcome. Thanks.

[Chemar]

Mike

I am not a PANDAS expert as we have never dealt with it...

but

it has always been my understanding that the immune system here would be under attack because of having to continuously fight off the strep......therefore boosting it would be helping it? ie from what I understand the autoimmune reaction here to the strep is in effect damping the rest of the immune system.

at least, that was my understanding

perhaps those with more knowledge and experience of PANDAS would be able to correct me on this if it is inaccurate

 

Dedee

fish oil is by far the best source of Omega 3 EFA however, SOME people tic more with fishoil

 

If this is the case, then the next best source of Omega 3 is flaxseed oil

[Dedee]

Thanks Chemar, I thought I remembered something about that from one of your posts. I was thinking of adding an Omega 3 for my son but was hesitating because I wasn't sure exactly how to go about it. You're always a wealth of information!

 

Dedee

[Sunshine]

Mike,

 

I think that you are correct. IMHO, boosting the immune system of children with PANDAS can cause a problem. We were told to regulate the immune system, but not to boost it. We did try boosting my son's immunity early on, and it caused a flare up with his symptoms. All of my son's supplements are immune regulators.

[Mike]

Mike,

 

I think that you are correct. IMHO, boosting the immune system of children with PANDAS can cause a problem. We were told to regulate the immune system, but not to boost it. We did try boosting my son's immunity early on, and it caused a flare up with his symptoms. All of my son's supplements are immune regulators.

 

 

What can I do to regulate the immune system? What do you use? Thanks.

[Sunshine]

I hesitate to comment too much, as our approach differs from the majority of PANDAS cases on this board.

 

We have found that strengthinging my son's immune system overstimulates it, but he is not on antibotics. My son's ND has encouraged us to try cod liver oil and vitamins A, E, and C. I have read elsewhere that C can boost one's immunity, although my son seems to tolerate it well. Perhaps in the right quantity it is an immune supporter. My son is also on other supplements based on his different needs.

 

Most people here seem to have found success with Azith which helps to regulate one's immune system. In cases such as that, I wonder if some immune boosting supplements may be tolerated. I would check with your doctor to get the right combo of supplements and antibiotics.

 

As a side note, I would urge you to check your son for heavy metals. I have read that strep binds to metals, especially aluminum. It is certainly the case with our son.

[Mike]

I hesitate to comment too much, as our approach differs from the majority of PANDAS cases on this board.

 

We have found that strengthinging my son's immune system overstimulates it, but he is not on antibotics. My son's ND has encouraged us to try cod liver oil and vitamins A, E, and C. I have read elsewhere that C can boost one's immunity, although my son seems to tolerate it well. Perhaps in the right quantity it is an immune supporter. My son is also on other supplements based on his different needs.

 

Most people here seem to have found success with Azith which helps to regulate one's immune system. In cases such as that, I wonder if some immune boosting supplements may be tolerated. I would check with your doctor to get the right combo of supplements and antibiotics.

 

As a side note, I would urge you to check your son for heavy metals. I have read that strep binds to metals, especially aluminum. It is certainly the case with our son.

 

Thanks. We were 5 days into Keflex and switched to Azith. I have 15 Keflex capsules at 500mg ea left over. I was debating giving them to him evey few days, but since the strep is now gone decided against it. I think he needs to get his immune system back to normal now as I think he got Candida issues with the antibiotics. From what I read on Candida it can cause anxiety as well which would just increase tics. I bought some probiotics and am making sure he gets multi vitamins. Is the metals test a blood test I should ask my pediatrician about? Interesting on the cod liver oil. Never thought of that one. I will look at the benefits. I do give him an Omega 3 every day now and a little extra Magnesium, Zinc, and Calcium. Was also thinking about a B-Complex. Do you go with heavy doses of A, E, C? I think the problem with getting additional anti-biotics from my Dr. is he knows nothing about PANDAS. He will most likely just tell me the strep is gone so no need for any.

[Sunshine]

Welcome to my world, Mike! It's a constant debate over balancing antibiotics and supplements. I know how hard it is to get your child on daily antibiotics, but it does seem to be SO beneficial to many PANDAS kids. It's just not a route that seems to work for my little guy. Keep trying though, if that's what you think works best for your son.

 

Metals testing can be done in all different ways. Use the search key in the top RH corner to find old threads about metals. I think Andy's threads are especially informative. I think that ETDA is the best test for aluminum, but it can even show up using the DMSA urine challenge (which tests for about 14 different metals).

 

We do not use heavy doses of vitamins. I have heard of PANDAS patients tolerating as much as 5000mg of vitamin C a day, but we have, thus far, maintained a very low dose. I would recommend testing to find out what your son is deficient in. Depending on where you are in the world, there should be many labs which run vitamin and mineral tests that can determine what your son needs.

 

I know that all this information can seem overwhelming at first, but it will quickly become second nature. I do hope that you will soon find some answers for your son.

[Mike]

Thanks. I would be curious to know who continually gives antibiotics to their kids and if it was easy to get the prescription from their doctors. Do they give antibiotics year round or just during usual strep outbreak times? I wonder if a small amount would still help during what I would consider the "recovery period". Many PANDAS sites describe the recovery as a slow gradual improvement (until another strep infection might hit). I wish I could just take him in for one blood test where they can check everything. Someone else told me their daughter took about 2-4 months to get back to normal after severe OCD behavior after a strep infection.