nicklemama

I was just talking to a mom yesterday who' s child has a tentative PANDAS diagnosis. He could not walk for several months. What treatments has your child been given? Are you seeing a PANDAS expert? I would consider taking your son to NY to try and see Dr Najjar or to Duke.

I will start giving ibuprofen. If that doesn't do it after a few days, I'll call his doc. For things like an exposure where he isn't getting sick, ibuprofen does it. If he loses a tooth or gets sick, clindamycin for 10 days is called in to be added to current abx. That works. He's already on treatment dose abx.

If you want to keep him in your public school you will have to find yourself a great advocate. I'd you lived in my area, I could give you a name.

This is the $64,000 question. We are three years in and no where near ready to stop abx.

Momwithocdson really said it like it is. This is our reality. Unfortunately, you are going to have to change your view of medicine and doctors and doing things "the right way" because it will hinder your quest to get your daughter treated quickly. I had no where to turn and I did a phone consult to start. My son had been suffering for a year with no answers as to what was wrong with him, other than he was suddenly mentally ill. Abx was started and we saw improvement. I didn't see any doctor in person for PANDAS for 6 months. One more thing I would point out, my son has NEVER had a positive throat culture nor titers to strep. Strep is not required for a PANS diagnosis. Strep falls under the PANS umbrella as PANDAS. The only thing cultures and titers are good for is identifying the infection for better abx selection. Other common causes of PANS is mycoplasma, flu, Lyme and coinfections, HHV6. It's a stark reality to wrap your head around. It's not how I thought of medicine at all. My opinion of the corporation called medicine is not very high now.

I've been thinking on this but I'm no geek and I'm not sure how to think about it. My son is compound hetero. He's not a primary ticcer but he will tic when things flare up. He also has diagnosed allergies from skin prick testing and takes 10 mg of Claritin everyday which is an antihistamine. I'm stumped. I was hoping you were going to shed some light:)

Don't kid yourself about reductions in the level of alcohol consumption by pregnant women. There is also variability in how each woman processes alcohol based on age, health and level of drinking before pregnancy. Younger healthier women may have a wider margin of safety in having a few drinks during pregnancy than older women or those with other health issues. This is a known fact. The Univ of Washington has two FAS experts who have lots of experience in assessment of infants and children for FAS. I had the opportunity to listen to a local doctor who has lots of experience in identifying FAS among adopted infants and children. She works at a major university affiliated childrens hospital. She lobbied to get FAS screening in place for every baby born at the hospital. When it was finally implemented and an expert hired to do the screening, all the peds and obgyns complained it was a waste of money. The common complaint was that they knew their patients and there was little to no drinking going on among the pregnant women. Imagine their surprise when at the end of the year the results were shared. Instead of finding approximately 3-5% of babies with FAS or FASD, which would be theexpected norm in the population, they found 18%. In a suburban, university hospital with a mostly middle to upper class clientele. To say everyone was shocked would be an understatement. Those suburban moms were drinking more than they were reporting to their obgyns. Its also hard for women to connect problems in their children when they reach school age and the problems begin to show themselves and the drinking they did when they were pregnant. As an adoptive mother of a child from Russia, I am very well educated on FAS/FASD. Thankfully, my son has neither. I know families who were not so lucky. Its a nightmare akin to PANDAS but for which, there is never really going to be the hope of any relief. I would add, its also a spectrum disorder. Some children are severely affected and others mildly so. In the world of FAS/FASD, children with facial features and born to mothers who were documented as drinking are diagnosed FAS (fetal alcohol syndrome). Children without facial features and/or without direct knowledge of the mother drinking are diagnosed FASD (fetal alcohol spectrum disorder). But whatever you want to call it, its difficult and preventable.

Two steps forward, one step back. You are 50 days into abx. My son is three years into abx, plus ivig twice. Little flares have been part of the package. They come and go. Sometimes, they are precursers to getting sick. Only time will tell. I'm sorry to have to say that my son is only now on the longest stretch of doing well he's had in the three years. It takes time to find the right combo. Still, illness will set him back. That is our reality.

It was a long slow process for us. We saw improvement within the first week or two but it took a long time to see major improvement. You may need to switch abx. It's a journey, that's for sure. We are four years from onset and three years from diagnosis. We've seen ups and downs and it has taken a while to figure our what the infections and triggers are and what helps.

Merry Christmas, Happy Holidays and a healing New Year to all.

I've been on minocycline for two years. I went off for 30 days and then had blood drawn for Igenex. I'm not sure who to see now. The integrative doc found nothing but hormone imbalance and she was extensive in her testing. I was diagnosed with RA in 1997. I have absolutely no joint damage after all these years. My hands look just like everyone else's. They do not look like the hands of someone with RA. I have a history of tick bites. I'll have to figure this all out after the holidays. I am tested every 3-4 months for mycoplasma and it's always in the raised ranged but not sky high.

C4a is 3698(0-2830). Done at Jewish National C3a is 31(55-486)

I second the recommendation to tell the ped you want her refusal and why in writing. If she only knew Dr K, she'd know he is well removed from any notion of being alternative. Go to the walk in clinic and be honest at Walgreens. Take documentation with you. Call ahead and speak to someone. I am reluctant to say dump your ped to most who come here. There's always a chance of educating him/her. I think you have no chance and you need to leave this ped practice and find someone PANDAS friendly. My own ped is no PANDAS friendly doc but she will and has ran tests Dr T recommended, even if she knew she wasn't going to treat. It's not in my nature to be pushy to doctors. After four years of this PANDAS baloney, you can believe I can and will be pushy. You will have to wrap your mind around this.

Forgot to add, my C3a was low and my C4a was high. Some say this is mold,like Willie Shoemaker, some say its Lyme, forgot the name of the researcher who wrote the paper. I had some pretty extensive testing and there are no other mold indicators. The Dr says no mold. I also had a nutra eval test done by Alletess. I am not highly sensitive to any foods. I was a 1 for peaches, peanuts, cauliflower, egg yolk, eggplant, garlic, safflower, pepper, pears, apples. My neurotransmitters are normal. Everything is normal. She told me I'm only her 4th patient she's seen that has all these lab values that are so good. I am not at risk for type 2 diabetes, nor heart disease, nor myocardial stress, etc.... Nothing is out of order except my fibrinogen which indicates inflammation and I have high adiponectin and she said its so high it would be nearly impossible for me to lose weight. Well, you don't say, lol. She told me my insides are at the level of a 20 year old. She said its so rare to see this in 53 yo. Well, if only my outsides looked 20, as well .

Got my Igenex back today. It was negative for both IgM and IgG. My doctor is not an LLMD. She is an integrative medicine MD. She found I have a hormone imbalance and I'll be treated for that. I don't trust her to determine if I have Lyme but she was very willing to do the Igenex testing. They keep kits on hand. I would like to know what those of you with Lyme knowledge think of my negative results. I think I know the answer to that but I want to read it from a neutral party so I can make a better decision on either to see an LLMD or save my money for my PANS sons treatment. IgM = 18+, 23-25 IND, 39 IND, 41+, 83-93 IND IgG = 18+, 39 IND, 41+++ The rest were all -. No coinfections testing. I am symptomatic. I was diagnosed with rheumatoid arthritis in 1997. I have no joint damage just symptoms of joint pain and stiffness, muscle aches, fatigue, word retrieval issues, foggy thinking/memory issues, anxiety, quick to anger and irritate. I took plaquenil for years. Stopped two years ago due to retinal damage from it. Currently on minocycline pulsed dose for the past two years. Helps with joint pain but nothing else. When I was on plaquenil, I was pretty much symptom free. Feel free to tell me I have RA and need to move on. Thank you.

This is very interesting, the similarities. My son first exacerbated after a flu mist at age 5. Doctors were stumped and thought he was developing a mental illness. One year later I saw mystery diagnosis and figured out my son had PANDAS. Standard testing found nothing but treatment was started. 2.5 years after he was first treated for PANDAS, a new doc tested him for Lyme and coinfections and he was positive for ehrlichia and anaplasma. He's been treated for about 9 months now and is doing really well. So here we have two boys who display PANDAS symptoms after flumist, both with ehrlichia and anaplasma. I think you are the first person I've found whose child seems to mirror mine at presentation. Unfortunately, my son has never been asymptomatic since.

Nancy, you've pretty much said it all. We have to be very careful when we take our children to the hospital and we need to be very selective where we take them. Top rated children's hospitals are not necessarily the best choice in all cases. We have two here and one of them is full of naysayers. Other recognizes but is nowhere near competent to treat PANDAS.

BCBS PPO Michigan. Never had a problem. Long term abx, as in 3 yrs, no break. No questions asked, knock on wood. The coding on the lab slip is for infections and immune something or another. Must clarify, my dh's employer is self insured and BCBS administers the program.

As much as hate to say it, it's time for you to consider retaining legal counsel. Schools are mandated reporters. You do not want to find yourself with a legal problem and not be prepared. Give them Beth's new book Childhood Interrupted. It outlines steps and choices of treatment. They are making their first move and doing you a favor ( I know its hard for you to see it that way) by playing their first hand and talking to you as a courtesy. They did not have to do it.

Ask for something else. There are pockets in the US where azithromycin is not effective on strep.

Buried in paperwork and beauracracy is a very good description. My best friend is a cognitively impaired teacher in a high school. The paperwork on each child is a nightmare.

HHV6 is a herpes virus. This one might be hand,foot,mouth disease but I can't remember for sure. It is known to mimic strep molecularly and so, our children may react to it the same as if they'd gotten strep. Abx will not do a thing for a virus.

He may not have the lab to do it like Dr Cunningham does. Dr Singer is a Tourette's expert at Johns Hopkins. My personal belief is he, the great expert, missed PANDAS, because surely there were PANDAS kids amongst his Tourette's kids. Someone else came along and embarrassed him. Now he must show the world he was right and everyone else is wrong. Ego.

I took DS to an ENT early this year to discuss frequent nosebleeds because his allergist insisted he have a consult about them. I filled out the medical history. When the ENT came in, he immediately said"so you are here to get your PANDAS child's tonsils out". I nearly fell out of my chair. I couldn't speak for a minute. I had come with some PANDAS literature. I was hoping to just talk about the nosebleeds and not have to get into a PANDAS discussion, lol. Turns out, he is a huge advocate of removing PANDAS to tonsils. I have not taken him up on his offer because, as I told him, if it ain't broke don't fix it. If/when DS has another major exacerbation I'll be ready. He is following DS every four months. We see him again in a week.

It's time to hire an advocate to take on your school. Sadly, some schools will drag their feet until you get one. Advocates know the laws and the time lines and they know how schools operate. They will have experience with your school district. I'm a teacher of 20 years. I'd never take on my school district without one. I am not equipped to do so and neither is the average parent.