formedbrds

oh my gosh. The Internet is all over the place with conflicting information about how to disinfect retainers and regular maintenance. The orthodontist has no preference other than no heat. (Not much help) We have both kinds of retainers; the traditional with wire across front and the clear plastic similar to Invisalign. We have thrown out the toothbrushes but need to do something about the retainers. We are a few days into the antibiotics. Thanks for your advice.

Wow. Thank you for sharing.

Which antibiotics & antivirals are easiest on the stomach and in general have the least discomforts associated with taking them? P.S. Yes, we know that we could do IV, need to control yeast, and need to take probiotics.

No you are not overreacting. Yes, it does come back after long periods and can be harder to control the 2nd, 3rd, 4th time around. (speaking from experience) Contact whoever has been helping you managing this and take action now. I don't know lime but for non-lime ibuprofen can help a little. Otherwise, I second rowingmom comment about supplements.

As pandas parents we know first hand that the immune system affects our children's brains. Now they have found that missing link. Any doctors or scientists here with input on how this information can help our children? http://www.sciencedaily.com/releases/2015/06/150601122445.htm

This is not just a K-12 problem; the universities are going to require them too and with no personal exemptions. http://www.universityofcalifornia.edu/news/uc-plans-require-vaccinations-incoming-students. This is not just a California problem; legislation is popping up all over. NVIC.org is a national organization -- they have a long list of pending legislation nation wide. This is the first time ever that they have seen so much activity to mandate vaccinations. And many of the universities in those states are already requiring vaccinations. Where is my/ your pandas child going to go to college?

There is a support group in Orange County that has this information for you. You can find them at the yahoo group OCpandas or by contacting Beth Maloney.

To add to the great information already given: A good standardized olive leaf extract, vitamin d, and probiotics fight infection and work on the typical pandas triggers. Experiment with different natural supplements known to fight infection. Natural stuff can take a little longer than pharmaceuticals, but if you child gets worse, go for the meds and switch to naturals after remission.

Does LA stand for Los Angeles or Louisiana?

They can help with colds/flus in general, so I assume they can help are Pandas kids a little.

Twinlabs has Mega D3 Dots 5000IU This tiny tablet tastes like candy. It disolves in your mouth.

S

Yes, it worked for more than a year with no backsliding at all... then it stopped working. The dosage can be extremely high compared to the recommendation on the bottle. You could ask an ND what dosage for your child. Nature's way Standardized is a good one. Make sure it is the standardized one. Keep giving probiotics they help too.

I second Nancy's recommendations. Probiotics also help fight infection, so the more the better. If you aren't giving diflucan or nystatin, you may want to ask your doctor about those. Space it a couple hours away from the boulardii.

Are you allowed to give melatonin and/or L-tryptophan? It may take a good dose to "knock out" a pandas kid at night when she is trying to do rituals. It does help to get some sleep into her and you. You may have to give it secretly or say it is a vitamin. Pandas children don't want to take something that will make them fall asleep while doing rituals. Good luck in Bethesda!

How far apart do I need to give nystatin and saccharomyces boulardii?

This is what I was told by a doctor: Stay on valacyclovir (valtrex) for 3 months then switch to valcyte for 3 months because viruses mutate around the antiviral. Check titers at the end of the 6 months. I asked about taking a break one day a week; the answer was no.

From a CNN news story a few years ago. "...After his court case, the Virginia Legislature passed a law allowing teens over age 14 to have a hand in making their own medical decisions...." http://edition.cnn.com/2009/HEALTH/05/28/treatment.parental.rights/index.html

I know that you are looking for what helps with a pandas child with restless leg, but I thought I'd tell you what helps my restless leg maybe it will help your pandas child too. For me, the best help is quick paced walking (not running - the walking motion on the foot/ankle is what does it) for at least 30 minutes if not longer in afternoon or evening. The second best help is a foot message with lotion. The lotion is a must. It seems like the skin needs to be rubbed in addition to the message, so maybe that is why it only works when I use lotion. The next that helps is 500mg calcium citrate with 250-500mg magnesium (These are my adult dosages.) taken in the evening. There is definitely a mental component; I must not think about it. Once, when the restless leg lingered for a several days in a row, I added hot baths with bath oil or oatmeal bath stuff, hypnosis/ guided imagery for relaxation, and stretching. Hope this helps.

OK. I called the pharmacist, she said I can take anti-virals and probiotics at the same time.

Do I need to keep probiotics and anti-virals 2 hours away from each other (same as antibiotics)?

When you give steroids, do you mean that you give a steroid burst, or do you just give a low dose for a couple days?

We switch around, so it might be good to know what has worked for people with different antibiotics.

I never thought to give a dose right before that evening crash. Good idea.

Do you find that you have better success in combating the PANS/Pandas by spreading the antibiotic throughout the day or giving it all at once?