[Won't drink water]

Lemonade, Popsicles, watermelon.

[I just really need some help/advice]

Your daughter sounds like she has PANDAS and if a doctor has given her that diagnosis, I would feel pretty confident. My son has never had problems at school and he is going into the gifted program next year in middle school. He is 11.

 

Make appts and see whoever has the first opening. Dr L is a good choice. It takes months to see theses experts.

 

Ibuprofen dosing is 5mg/lb. every 5-6 hours. Try that for a couple of days. Stop the inositol if it makes things worse.

 

I'm curious about the mepron. That's used for babesia. Has your daughter been evaluated for Lyme?

[Please help with Igenx results]

IFA antibody tests are just not highly accurate. Igenex gets more positives than standard Western Blot because they test more bands and they test two different borellia strains vs just one through companies like Quest. It's still an antibody test. With a result like that and symptoms still ongoing, I would look at a more accurate test and I would look at co infections. IFA tests are highly dependent on having an immune system that is working well and making antibodies.

[Can it be PANDAS with no OCD?]

I suspect your son has OCD in ways you do not realize are OCD. I didn't realize my son had OCD. He also has never had strep titers. Turns out it's because he has Lyme disease. If your child does not have strep, look for another infection that is causing PANDAS. It is actually called PANS.

 

Tamar Chansky has an excellent book called Freeing Your Child From Obsessive Compulsive Disorder. That book lead to my realization of exactly what was OCD in my son.

[Dr k Ivig protocol]

Have your doc call Dr Swedo at the NIH for her protocol.

[Do SSRIs ever have *lasting* ill effects, even after stopping taking?]

Eloquent Nancy. Back when my son started with OCD and anxiety, PANDAS was not widely heard of. He did very poorly on standard dose SSRI. He only lasted 6 weeks on them. Now they are a recognized part of treatment and it is generally understood by some PANDAS docs to start with a very low dose, well under the recommended levels by pharma. I don't think any activation or side effects are permanent.

[Anitbiotic/Augmentin - How long should treatment last?]

My son has been on abx for 4.5 years.

[Bartonella treatment?]

You can google bartonella rash and you will see a lot of photos. In some, they look like stretch marks.

[non therapeutic use of antibiotics in livestock]

When I was a girl growing up in Oklahoma the pastures had cattle in them. My grandfather raised cattle. They all fed on grasses plus some feed. In the summer, I would occasionally go with my grandparents to feed the cows on Fridays. I haven't lived in Oklahoma in 21 years. Now when you drive in Oklahoma there are rarely any cattle to be seen. My dad says they are all in feed lots. Being fed GMO corn and being given antibiotics. My how times have changed.

[Vaccine Exemptions in CA]

I am in a parenting board and there is a mom on there who is militantly pro vaccination and I've had words with her more than once. Yesterday, she said she was against the Calif bill. I have asked her if she would mind sharing why. We will see if I get an answer.

[The media and vaccines, important for all]

I feel like David trying to slay Goliath. I only hope the little man can actually win this battle.

[Vaccine Exemptions in CA]

You can rant all you want but that does not change the fact that legislators who pass this stuff are not qualified to read the research, let alone make legislation on it. They do anyway. Whatever is the flavor of the month. The PANS/lyme doc is not pushing vaccination. I just don't know if she will sign a medical waiver the way things are going here in Michigan. What doc wants their name on waivers these days? She is an integrative doc and she treats lyme and she treats PANS, so chances are, she will sign, but have no guarantee of that. His ped is a lost cause. We will be kicked out of the practice if I use a personal waiver. Whatever, I'm moving on anyway but I have one more appointment with her that I want because I have a mission to finish before we go to a new doctor for DS. We have one of the highest rates of personal exemption here in Michigan in the US.

[Vaccine Exemptions in CA]

If anyone thinks for one minute this is only a California issue, you'd be sooooo wrong. A bill was just introduced into the Michigan Senate for mandatory vaccination, eliminating the personal/religious exemption. Not only that, but in the last two months, Michigan passed a bill forcing any parent who chooses the religious/personal exemption to attend a half hour session with the county health nurse explaining why vaccination should be done. In my county, the health dept commissioner went a step further and declared you must bring the child with you. Its coming and I'm scared. I'm not certain if his PANS/lyme doc will sign an exemption. I'm going to find out at his June appt. He is due for DTap and meningeococcal to go into 6th grade.

[Starting this journey after visit with Dr. Latimer with a couple of questions]

My son has been on Flonase for several years. It's perfectly fine to give. Adding Flonase to his treatment has stopped all the sinus infections which cause flairs.

[Pediatrician Won't Do Lab Work]

If you have been pushing for a year with this doctor, you need to move on. If I had waited for my pediatrician to test my son 5.5 years ago, I'd still be here waiting. Find a doctor that understands and treats PANS. You don't have to jump to IVIG without testing. Test for lyme too.

[Turmeric question]

It may be the sulfur in Enhansa. DS, 11, is on Enhansa 600mg, twice a day without a problem.

[5 Year Old put on Zoloft, things got WORSE!]

At 6, my son was put on Celexa. He became suicidal in 6 weeks time.

[PANDAS/PANS for 10 years: SOS]

Its time for Igenex, I agree. My son was treated by Dr. K twice with IVIG. The protocol did not work because we found lyme disease in my son. The proper lyme treatment has my son functioning very well with only minor flares.

[23 and Me]

I finally broke down and did 23 and me for my son. I have ran the results through LiveWello. Now I'm trying to piece together the information and understand what it all means. I thought there used to be a document, maybe on Amy Yasko that told what supplements to take and/or avoid, depending on the results of the 23 and me. If you have any information, I'd be grateful. The ancestry was nice to get since my son was adopted w/out a lot of personal and medical history. My husband is very interested and wants me to order kits for the both of us.

 

 

[Does PANDAS every go away?]

Some are. It's probably variable between the individual. I also think it depends on IF you catch it early AND find treatment and whether you can get it into remission. We know there are kids who have seemingly gotten past it. We have parents who now realize they had PANDAS as kids. There are really no quick and easy fixes, though. Most of us are in it for the long haul.

[MRI's]

There is a very specialized, PET scan using an experimental isotope that has shown inflammation in the putamen and the caudate. Dr. Harry Chugani at Detroit Childrens has developed it for PANDAS. Aside from that, MRI is not commonly done in PANS kids and most anecdotal info says it doesn't find anything.

[Recurring/chronic sinus infections]

We found out our son had allergies that were causing recurrent sinus infections. Treating the allergies and using a steroid nasal spray at the first sign of a runny or stuffy nose has kept him from having one in several years.

[Antibiotics or not eating turning her teeth brown?]

It's surface staining. My son takes augmentin and biaxin. It comes off with teeth cleaning or a mix of baking soda and hydrogen peroxide made into a paste.

[federal task force to aim toward reducing antibiotic use]

Reminds me of those famous words " we are from the govt and we are here to help you". Scary.

[Seeing Dr. K in Chicago on Monday]

I do not know what he does currently. My son has not seen him in 2.5 yrs. Back then, he did not do long term treatment dose abx. He does do prophylactic abx after IVIG. His method of treatment is IVIG.