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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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fcefxer

Glutamate, Dopamine, and Vitamins OH My

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As a PANDAS mom, I feel we can decipher any puzzle, putting the nations sharpest detectives to shame. I think we've finally figured out ours. Yes my son had both elevated ASO titers and high mycoplasma. He has tics and OCD. But antibiotics did not fix it in spite of finally lowered titers. IVIG did not fix it either. To others in the same boat, I offer our solution.

 

My son had a ton of infections before we knew about probiotics. From that point on he always had a bad stomach. Those early antibiotics I think destroyed his intestines ability to absorb nutrients from food. Yes PANDAS has it's set of particular symptoms, but so do severe vitamin deficiencies and they are the same ones. OCD, anxiety, tics, brain fog.... We did start with B12 injections, and a yeast free, gluten free diet. Yes all of these things lower glutamate, and if my son eats wheat now (without good digestive enzymes) his head all but spins off. He become volatile and unable to think. These things improved things for awhile but we noticed the biggest change when we added Delsym cough syrup to our daily diet. I thought this worked so well because it reduced glutamate, but now find that it also lowers Dopamine. I think THIS is the biggest problem. We had to stop Delsym because my son developed side effects, but found B12 lowers dopamine (as well as increases histamine which we needed, it is a needed neurotransmitter) and St. John's wort as well. But the biggest improvement happened when we added high dose vitamins (Neurological Health http://www.holisticheal.com/neurological-health-formula-general-vitaminhhc-general.html) and especially additional B6 400 mgs, 50 mgs zinc, and niacin as well as SAMe. I think my son's serious vitamin deficiency caused a lack of proper neurotransmitter production. It is slowly happening but the brain fog is slowly clearing. The depression is as well. The social anxiety is going too. Today he was very late coming out of school and I was surprised to find it was because he was socializing. That just does not happen. We felt pyroluria was worth treating too and by adding the B6, and zinc and saw the improvement start there. It has been 3-4 weeks now. I no longer feel we need PEX or anything but good old fashioned vitamins to fix the neurotransmitter mess that has held us prisoner for so long. We felt this was a direction to pursue after finding his horizontal ridges across his toenails.

 

One last thing. I hear Ibedenone is a vital nutrient that is really helping PANDAS kids. It's a super charged form of CO Q10 that crosses the blood brain barrier. We will be adding that as soon as it comes in the mail.

 

I don't know if the previous glutamate question was directed at me as well, sorry to not respond sooner, but I've actually been having a life lately. That's been a real treat!

 

Nancy

Edited by fcefxer

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YAY! YAY! I am so happy to read this. I am going to research all things you listed, esp the neurological health.

Can I ask where you found the information about delsym? Is there a scientific explanation somewhere for how it works? I don't doubt you- I just like to read stuff I don't understand ;)

 

Wonderful news, Nancy :lol: :lol: :lol: :lol:

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So glad you are seeing such wonderful progress!!! Could you share your source for Ibedonone?

Since starting homeopathy we ditched EVERYTHING: antibiotics, probiotics, vitamins, minerals, diet (well, we try to stay GF for the most part). Now that we've had a nice break, I feel we can start slowly adding things back, and your post makes total sense to me... a good starting place.

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Yay Nancy! Much of what you're reporting is the same stuff discussed in the "histadalia" (sp?) thread (started by MaggiesMoon) about methylation cycles. SAMe is critical to the cycle as are B6, B12 and several other vitamins/minerals. I hope you see nothing but improvements (!) but if you hit a plateau or wall, you may want to keep methylation in mind.

 

It's a cycle of chemical processes and adding a missing ingredient can re-start the cycle. But if the entire system isn't in balance, you can sort of "move" the clog in the cycle from one place to another. So you could add SAMe but then encounter a problem with something else downstream. I don't mention this to be discouraging. The contrary. I just want to mention that you may need to look at the rest of the synthesis points to check for "clogs" if you stall in progress. Doesn't mean you're not on the right path. Just that there could be another place that needs your attention once you get one part of the cycle re-started.

 

I too feel this is an underlying situation in the body that needs to be working properly before you can help the body get back into synch and it seems to be critical to the sufficient production of all the neurotransmitters, not just dopamine. Tough stuff to understand. But it seems to tie the whole thing together, including the body's ability to detox and have a robust immune system.

 

I hope you and your son enjoy a smooth road to recovery!!

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Thank you for posting this! I'm so happy for you and your family.

 

I have a question for you. I too, did see some benefit by giving Desylum, but was fearful of doing it for more than 3 days. I'm not ready to ditch our azith, and as far as I know we don't have any gut issues. But I am looking for the first step to something that can help with the remaining OCD, and mild separation anxiety that my son has since have two IVIGs (7 months apart). I feel he needs something to be able to get through CBT, which we would like to start to address the remaining OCD. I was thinking of NAC (actually I was thinking lowest possible dose of SSRI before I remembered that there are other things that might achieve the same goal in a more natural way with less side effects). Do you know if NAC plays a role in that cycle?

 

I am also wondering if anyone reading this and using these remedies had a cunningham's test done, and if so, what the D1 and D2 levels were?

 

DS doesn't have any gut or autism issues. I just mention that because it seems that some kids with these issues might benefit from adding in a different part of this cycle...which I now will go read up on!

 

DS had high cam K and anti-lyso, but was normal for D1 and D2 in initial test (and oddly, after IVIG when he was at his best, his D2 went to very top of normal range, other levels normal, - although cam K was still 131). So as far as I can tell, dopamine levels MIGHT be OK (althought, who knows how much these fluctuate on a daily basis? - my child was not in exacerbations when blood taken for either test)

 

off to read the histadalia tread LLM mentioned...if you have any other good article on this or if there are other resources explaining it, please let me know where I can find them!

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Yay Nancy! Much of what you're reporting is the same stuff discussed in the "histadalia" (sp?) thread (started by MaggiesMoon) about methylation cycles. SAMe is critical to the cycle as are B6, B12 and several other vitamins/minerals. I hope you see nothing but improvements (!) but if you hit a plateau or wall, you may want to keep methylation in mind.

 

It's a cycle of chemical processes and adding a missing ingredient can re-start the cycle. But if the entire system isn't in balance, you can sort of "move" the clog in the cycle from one place to another. So you could add SAMe but then encounter a problem with something else downstream. I don't mention this to be discouraging. The contrary. I just want to mention that you may need to look at the rest of the synthesis points to check for "clogs" if you stall in progress. Doesn't mean you're not on the right path. Just that there could be another place that needs your attention once you get one part of the cycle re-started.

 

I too feel this is an underlying situation in the body that needs to be working properly before you can help the body get back into synch and it seems to be critical to the sufficient production of all the neurotransmitters, not just dopamine. Tough stuff to understand. But it seems to tie the whole thing together, including the body's ability to detox and have a robust immune system.

 

I hope you and your son enjoy a smooth road to recovery!!

 

Yes! Just read the thread on methylation. It sounds very similar. We will be adding folate (that's folic acid isn't it?) As far as Idebenone, I heard this from a friend who saw a Dr. Lynch (I thin k) at CHOP. Said VERY GOOD for PANDAS kids. Cross BBB and fixes things. My son had a bit too much wheat yesterday and was feeling a bit funky. We added the Idebenone last night and he's back to great today. I shudder to see reports on tv this week that vitamins hurt people. Main stream quacks will now be taking kids off vitamins. We are seeing our DAN in a few weeks, but ran things through him over the phone. We will fine tune this then. I wonder if he'll have to do this all of his life? Still, to have an answer even if it is life long is amazing. The Delsym stuff I read from another mom on here about lowering glutamate. I researched dextramothorophan (sp?) and it said it also lowers dopamine. I added SAMe only for happiness effect, not knowing it was an important part of methylation. To think how amazing this all coming together is.

 

Nancy

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