Where to go next

[dasu]

I have two PANDAS kids summarized in my sig. We went through a very difficult flare last winter, and they did IVIG and 3 months of Clindmycin and showed some improvement. (Although unfortunately strep has been circulating and my daughter has been set back)

 

They currently have some other symptoms too that aren't resolving. They both have markedly lower energy and stamina. If I compare them to kids on their sports teams they get tired more easily and cannot handle the heat as well. This may not make sense but they are also impulsive and hyperactive. They often have disproportionate reaction to negative stimuli, for example a simple trip to the store can generate a lot of complaints. A normal daily rhythm and getting them to follow basic rules is difficult to achieve.

 

My daughter seems to be set back in the last month perhaps from the strep exposure, although we saw no sign of illness. Hers appetite is diminished, she often feels nauseous, and has lost weight. She has suffered from occasional rages which we cannot find a trigger. One suspicion is food, perhaps bacon or eggs. And finally we have noticed some pica, eating paper, although seems to come on during stress.

 

They are on the following supplements: natural thyroid, olive leaf, oil of oregano, krill oil, fish oil, hydroxycobalmin and molybdenum (once a week).

 

We were finally able to do bood tests for some things. We ran the Igenex on my son only (only so much $) and it came back negative for all. A standard Lymes test was done also ang came back negative. HHV6 was drawn but not able to be tested, so we will have to re-test. EBV came back in range, but showed they had had EBV in the past. The mycoplasma is the only test that showed marginal - son's IGM was 0.18 IGG was 0.88, and my daughter's IGM was 0.34 and IGG was 0.92.

 

Does anyone have any thoughts? We were so hopeful that these tests would show us what is driving the PANDAS and nothing has popped out.

Edited June 9, 2015 by dasu

[WorriedDADNMOM]

Yep, sounds all too familiar. I would say, can you get to a Pandas doc?? Some one literate in vitamin and mineral deficiency and how they affect behavior, mood, temperament, ocd, odd, etc............

 

For us Milk allergy was also very important to look at.

 

I think these things could have triggered the cascade..........albeit.....but not being the main "cause" currently if you will. I would for sure say the pica is a sign of vitamin and mineral deficiency. While this is not medical advice I would make some recommendations.

 

Zinc and copper are antagonists. High copper levels would not be good for behavior....meaning low zinc. Zinc is critical for good immune function. Zinc in a good Multi vitamin would be critical. Also, Zinc/Vitamin C during sick for protocol would be important.

 

Lithium Orotate for mood stability. Probiotics for gut health.

 

P5P vit b6-------I just realized how huge this is and why my kiddos are on it.

 

http://www.livestrong.com/article/474532-what-are-the-health-benefits-of-p5p/

 

I think for me and my kiddos, there is no way I could have done this on my own and gotten the great results we have gotten. Our worst Pandas/pans kiddo improved in EVERY way, shape and form as it pertains to mood, behavior, muscle tone and strength, attention and focus, happyness and mood stability, social skills, anxiety, tic and tremors gone.......you name it ......it improved.

 

It really has been a lifestyle change and I would not hesitate to go to our doc again.

 

If you need further info.....PM me.

[dasu]

The kids see Dr L. While she is good I have read a lot from this forum on the need to research other triggers for PANDAS, hence the testing.

 

We have recently added a holistic doctor, I am not sure if I am sold on him though. He has looked at thyroid, detox from metals so far. Nothing about vitamin and mineral levels.

 

So this may be a good avenue to approach. I will order up some p5p. We need to solve the long term immune picture, but need to do better with day-to-day life until then. Thanks.

[LNN]

Unfortunately, the symptoms you list can be caused by a lot of things. But you know when a parent mentions some issues and you immediately want to tell them to look into Pands because some of the things they mention hit close ot home? That's what your post did for me - the nausea and loss of appetite, the fatigue and heat intolerance, the crankiness - my daughter had these, plus flu-like symptoms like sore throat, muscle pain and brain fog/inattention. (no pica)

 

For her, it was mold. Now, we'd gone down the mold rabbit hole a few years ago when my son was struggling with lyme and wasn't improving. After 18 months of combo abx, our LLMD said "When people with lyme don't get better, I tell them to look for mold". It was April and the school year was almost over, so I focused on our home. We emptied the basement of damp boxes, unused items...we replaced carpets, we inspected every pipe, drain, the plumbing behind the showers, the attic, every place I could think of. Although I never found a smoking gun, my son improved greatly a few months later, so I always figured that something we'd gotten rid of was the culprit.

 

This year, my daughter was in the same classroom that my son had been in 3 yrs ago. Last fall, she started missing school due to illness. After 20 absences, I finally put it down on a calendar and saw that she always went to school feeling ok on Monday and was sick by mid-week. Then she'd feel better over the weekend and the cycle would repeat. Prior to this, we'd tested thyroid, cortisol, tried dairy free, tested for viral infections - nothing helped. We finally did some of the blood work recommended by Dr Shoemaker (http://www.survivingmold.com/diagnosis/lab-tests ) and found that mold was the problem. Needless to say, the school was less than enthusiastic but that nightmare story is for another time. Once we dialed in on the right treatment, she turned the corner and her health has come back.

 

The one thing that struck me is that you say IVIG helped some. 25% of the population has a genetic mutation (on a gene called HLA-DR) that means their immune systems don't produce antibodies against mold. So the mold the body is exposed to doesn't get flagged and eaten by macrophages. Instead, it just keeps recirculating in the body, creating endless inflammation. IVIG would give a body donor antigens that would get rid of that mold invader. But IVIG has a half-life of about 3 weeks. So if the mold exposure was on-going, the problem would resurface once the donor antigens disappeared. So it might be worth talking to your doctor about some of the Shoemaker tests, including HLA-DR, C4a, MSH and TGF Beta-1. Our tests were covered by insurance and done by Quest. Shoemaker does say the C4a should be done by Quest's Jewish National Laboratories subsidiary in Colorado, but still covered by insurance.

 

As for the rage - agree with Worrieddadnmom - also check copper levels. Also, if your daughter has an MAO-A mutation, niacin can help with rages. My son takes 100mg niacinamide and it makes a big difference. (niacinamide doesn't cause skin flushing. regular niacin does).

[pr40]

it's like you are describing our kids except for pica. recent blood test came with mycoplasma IGG in the indeterminate range.

we are waiting to hear from dr.

I decided to start giving dd minocycline small does, 50mg x1 for a month.

ds is already on zythro.

Other than that, I am trying to tell myself that this is as good as it will get and from now on it is CBT.

after all, they do have some energy to be able to play sports.

My understanding is that the issues they have are related to their immune system and until we know better how those work, we don't really have a clear next step. what is your response to your question?

[dasu]

Thank you.

 

@pr40 I understand the principle of developing "acceptance" of your children and their conditions. That said, symptoms wax and wane. There are times, however brief, that the sun shines so brightly and give us hope that that is truly normal. Perhaps.

 

I have read varying protocols for mycoplasma eradication ranging from days to months and with different abx. Why minocycline?

 

@llm Your story was fascinating but I am glad it worked out for you. So I think that is a great suggestion to pursue. I read up The kids are home schooled - I dont know how they would handle a public or private school. We moved into our current home as renters about 1 year ago, and it was the fall of last year that brought on the worst PANDAS flare. Again this wasn't immediate, but perhaps with fall rains or usage of water in the house, it produced enough moisture. There are a couple of known mold sources (e.g. gray water drain for laundry in basement) but I do not consider them major. We also live in mixed farmland and woodland, but there are a lot of dead and rotting trees around. Our old house had one mold area in bathroom (leaking toilet) but with remodeling was replaced, however the basement had a musty smell but no know mold we could see.

[pr40]

Thank you.

 

@pr40 I understand the principle of developing "acceptance" of your children and their conditions. That said, symptoms wax and wane. There are times, however brief, that the sun shines so brightly and give us hope that that is truly normal. Perhaps.

 

I have read varying protocols for mycoplasma eradication ranging from days to months and with different abx. Why minocycline?

 

@llm Your story was fascinating but I am glad it worked out for you. So I think that is a great suggestion to pursue. I read up The kids are home schooled - I dont know how they would handle a public or private school. We moved into our current home as renters about 1 year ago, and it was the fall of last year that brought on the worst PANDAS flare. Again this wasn't immediate, but perhaps with fall rains or usage of water in the house, it produced enough moisture. There are a couple of known mold sources (e.g. gray water drain for laundry in basement) but I do not consider them major. We also live in mixed farmland and woodland, but there are a lot of dead and rotting trees around. Our old house had one mold area in bathroom (leaking toilet) but with remodeling was replaced, however the basement had a musty smell but no know mold we could see.

I have read varying protocols for mycoplasma eradication ranging from days to months and with different abx. Why minocycline?

 

bc mycoplasma is like a virus in that it does not have a cell membrane. It was recommended on one of the sites related to the Gulf vets. also, minocycle seems to be a very speciall abx -- here is one site that describes its neuroprotictive properties, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171989/

I believe in trying and reassessing after a month. so far, no herxing or anything else. she is on a very low dose, 50mg x 1.

Edited June 11, 2015 by pr40

[melmix]

Just to add one thought - my son has a persistent cytomegalovirus (CMV) infection which is another virus I think is common in PANS.

Melmix

DS 8 PANDAS/PANS/Lyme