Gpookie

Don't know if it helps, but my kids had stubborn strep and many viral infections. They (3 years ago at ages 6 and 7) responded beautifully to HD IVIG...all acute symtpomsndisappeared. But it didn't hold. Treating the underlying (strep) infections with a longterm abx combo and antivirals to lower viral load + a years worth of monthly IVIG for mild immune deficiency...they've been holding at 200% for almost 2 years...Monthly IVIGs at .5g/kg take about three hours at home, they play on the xbox and miss no school. They sailed through the HD as well.

Qannie47, you've written the most perfect summary of PANDAS I've ever seen.

Thank you for the update...If I may ask, does this mean he did not have PANDAS?

Hi, I have an odd questions. My kids PANDAS symptoms have been resolved for some time, but due to a mild immune deficiency, they have been on 2 months of Valtrex 500mg BID to lower their viral load. We will be switching to acyclovir 400mg for the long term. they seemed to have some side effects from VALTREX (emotional sensitivity- tho not the PANDAS type, and a bit of aggressiveness- both listed as possible side effects. Did anyone else experience these side effects. Separate note. Did anyone do well of Acyclovir for lowering viral load long term?

I give my kids glutathione sublingual lyrics with a spray...anything via the gut does not work. Even better is the creme (transdermal).

My kids have a mild immune deficiency (hypogammaglobulinemia) and can't fight off infections as easy...thats why abx combo and anti virals + LD IVIG got rid of PANDAS.

My kids get 400mg magnesium per day. We just go by what's on sale, but mostly citrate. The recommendation is to start at 200mg and uncrease until you get diarrhea and then go to the highest dose that didn't cause diarrhea.

Magnesium.

Antivirals were as effective for flares from viruses as antibiotics were for strep infections. Same for allergy meds and flares from allergy meds. We're on longterm antivirals to lower their viral load...

When my kids overeat, they are feeding the yeast beast inside them....

2 PANS kids plus mom (nonPans). Long-term Valtrex addressed it. Brought down viral load....

Magnesium is as important in our house as the abx for our sons. It cleared up their ADHD, sleep issues and keeps them regular to rid the body of toxins...

I actually think the frequent urination has to do with immune system reactions. You also see this with allergic reactions and adrenal issues....

My kids did great on .5g/kg per month after the HD didn't hold. That together with the right abx combo solved it....

My sons hover at 1800+, but only tests for moderate ragweed and dust mites. LDA is helping tremendously.

When my kids were at their worst, the liquid KidsMulti-Calm was a lifesaver. It's actually what got rid of the ADHD symptoms and sleep problems with both kids when they were at rock bottom. Tastes nasty though...

The best advice I can give is what I think tends to work in most situations for doctor? I hope you can take the advice in the spirit it is given, which is to make sure your kids can get the most attention and best possible care! Prepare a half or one page summary for the doc., make sure it includes ONE specific request or question for him/her. And then put everything else in a file and be prepared to answer questions. I would say first, figure out (realistically) what you want out of the appointment: do you want simply the doctors commitment to seriously turn every stone to figure out what was going on? Do simply want a neurologists input of some of the neurological things you have been seeing? Are you going in determined to get a PANDAS diagnosis? Do you want to convince the doc of something or do you want him/her to be curious about your situation, ask questions and figure out what is going on? In our case, we had a specific (but open-minded and realistic) goal for each doctors appointment. We were also willing to accept that there was something else going on than what we suspected. In my experience, it's best to get rid of as much emotion about the situation as possible before going in. Drs cannot really do anything with the parents emotion and it might cloud the picture you are trying to build (I recognize that for PANDAS parents, this is a phenomenal task!!!). I always try to look at it from the Dr.s perspective What does he need to know to evaluate my child for whats going on rather than tyring to give every detail of what we experience at home and how it imlacts us. Present as many facts as possible and try to focus on the clear indisputable facts. Try not to press a diagnosis in a certain direction, but present clear, solid facts that paint a picture of what is going on. Even the best doctors seem to get skeptical if the parents walk in with a diagnosis. Instead, try to link any causal relationships in a factual way if there are any. Example: I would recommend not going in looking for a PANDAS diagnosis or other, but you CAN say (if true): I notice that if my child or someone in our house gets sick, XYZ happens. This has happened in January, April and August and each time, the episode lasted ABC. 123 made it worse and 456 made it better. We also notice (in our family), every time my child failed a math test or got sent to the principals office for behaviors, 2 or 3 kids called in sick the next day. Things like that. I find that many doctors treat PANDAS but shut down with the use of such terminology (i.e. Johns Hopkins) Try not to dump a zillion details on the doctor, but group symptoms and give them a name. With my son, we said things like: He began to restrict his eating, could not sleep at night and found it very difficult to stop moving, even in his sleep. We did not go into: he tapped his foot 10 times in an hour, he tossed 23 times in bed and rolled his eyes and ate his bread but not his eggs and he would cry when the door open and he couldnt sit in the car without crying. We would say: he lost his fine motor skills overnight, rather than give a laundry list of things (unless the doctor asked). Make the doctor curious and let them ask questions. Doctors have it rough, too, and need to weigh the information you give them, so make sure that you dont lose them in detail or put them in a binary situation (i.e. you think its PANDAS, he doesnt, there is an argument and your child never gets evaluated). Think of the doctors as a potential partner, though not all will be in the end. the trick is knowing when to end the conversation an walk away. Having a sick child is so difficult, we figured that our energy would NOT be well spent on convincing doctors, but on getting help. Now that are kids are well, we have energy to spend on the convincing...But be firm and convincing!!! I know its tough, and I hope some of it helps. Good luck and I hope that your children get the help, attention and care they need.

Quick question: Have any of your kids been diagnosed with (mild) IgG subclass deficiency, treated with monthly LD IVIG (.5g/kg), which resolved and the IVIG were stopped but the numbers held and deficiency did not return? My boys'numbers seem to be holding 5 months after stopping, they're doing great, but I'm interested in longer term stories...fingers crossed... Thanks in advance!

Not for my kids, but for me, I tried Apple Cider Vinegar for my candida. While it greatly helped general digestive issues, it made my yeast many, many times worse. For me, GSE worked wonders. The GSE drops worked far better than the pills...I gained 12 pounds in 3 weeks on Nystatin...go figure. For my kids, nystatin did not work, but garlic pills were a miracle, but massive die-off for 3 days before things settled...2000mg a day.

My kids are starting year 3 on Augmentin. We added Clarithromycin 6 months ago. They cannot be without either but are at 200% with both.

Been there, did that, feel your pain!!! But I do chuckle since once the switch is turned off, crazy leaves the house. As long as they never start levitating above the bed or doing a 360 head spin, we just go with it for the few minutes before it ends. Glad you can still chuckle, too!

One of my kids only flared with allergies. Dr. L treats his PANS and referred us to someone to treat his high IgEs (1800+!!). She is very very good at working alongside specialists and pediatricians...

I don't know about Dr. T, but Dr. L works for us because: if it's PANDAS, she'll see it right away, if it's not, she'll tell you (she's a neurologist and can spot other issues, too). Also, she works wonderfully with other doctors/specialists as she respects their specialty as she wishes hers to be. Her assistants and she are very responsive once you are an established patient, by phone and email and if you need a prescription... No experience with Dr. T, but Dr. K is also good, though very different from Dr. L

We're also in MD and our pediatrician always stocks us up on extra/new abx, prednisone, anything we might need when we travel...lol...we had 3 different abx in our suitcase this summer. I would ask your pediatrician (or Dr. L, who we go to as well). Good luck and have fun!

I agree with MomWithOCDson. Apologies for my brevity in my prior post, but she says it best. Inflammation is usually the culprit with my kids, though the inflammation is triggered differently in them...That's why the Motrin works for us...