nicklemama

I will PM you. Look at the top right hand corner of this page.

Dr Nicholson is off in California doing his research and whatever it is he does, lol. He got those honors after exposing the military. They tried to shut him up and denied Gulf War Syndrome for many years. My understanding is Dr Nicholson did not shut up and was eventually proved right and that's when he got his honors and veterans got treatment. Gulf War vets came home and passed Gulf War Syndrome (mycoplasma fermentans) to their families.

Mycoplasma is responsible for Gulf War Syndrome. Its Mycoplasma fermentans. Its incredibly difficult to get rid of. Its been weaponized for biological warfare. Dr Garth Nicholson uncovered this and the gov't nearly ruined his career. Lost his job at a Texas University. Mycoplasma is also a lyme coinfection. Some speculate it occurs more often than any other coinfection. A doctor who worked on Plum Island supposedly has proof and certainly claims to have knowledge that the tick area of Plum Island was the testing location for weaponized mycoplasma. Its also speculated that the Dept of Defense was purposely infecting inmates in a Texas prison to test vaccines against mycoplasma and some other infections like brucellosis. Many of those inmates died. The ones that lived had rheumatoid arthritis, ALS and MS at very high rates compared to the general population and even in other inmate populations. I didn't used to believe in all those gov't conspiracies but I'm leaning toward the other side now.

Ask them for the uninsured rate. I'm surprised she was admitted and it was administered without prior approval from insurance or without you signing a waiver. My son had IVIG at an outpatient hospital. The insured rate for a child who weighed 65lbs was $22,000. The uninsured rate was $7600. Med costs were $5800 directly from the manufacturer and the $1800 was for the nursing care, supplies, etc.. for the two days. We had to pay the uninsured cost up front.

I don't know that any refuse it. Never heard that. They all have their individual opinions about how, when, why, and frequency it should be used. Some have better access to offer it.

Why don't you ask the nurse navigator to provide you with documentation that this physician is, in fact, a PANDAS expert.

You needed to read the entire article. Every person with a systemic Sacc B or Sacc C infection in this paper, had two factors, IV catheter and antibiotic therapy. The mode of transmission is assumed to be nosocomial(hospital acquired) from the hands and from eating raw, unwashed fruit/veggies. The caution here is supplementing with Sacc B while you are undergoing IV antibiotic therapy and likely if you have any sort of port.

My son had his initial episode two days after flumist. Let me tell you from experience, they may get better for a short temporary time, and my son did, but if you get no treatment like my son, for an entire year, you will know what it does to a child to not be treated with abx for PANDAS/PANS. Its not pretty and the consequences are a more chronic PANS that, four years later, has not fully resolved. Its been a long road to get my son to a point of doing pretty well. Its been costly in terms of dollars and in terms of lost relationships and opportunities and losses of things that little boys are supposed to experience.

DS 10 had flumist in Oct 2009 at age 5. Full blown onset two days later. Dx'd one year later.

She said it when she was talking about vaccines.

That's the article I read.

B12 is known to cause irritability and anger. I would slowly back down on B12 and see how it goes. It has been one of the things that has helped my son. Too much makes him irritable. He is compound heterozygous for 677 and 1298. We were giving him injections. Now we use a cream for dermal absorption. Twice a day dermal is too much for him. We give it once a day. Have you checked her B12 levels? My sons was really high when we stopped the injections.

Polio variant? I'm hoping they are saying its not polio just because those children have been vaccinated against polio. I read something interesting yesterday that talks about the original polio outbreaks and its relationship to an agricultural herbicide for mold. Very common. My lyme brain won't allow me to recall it right now, lol. It won't surprise me if its a polio variant that has mutated in the face of a chemical. Polio is/was a harmless enterovirus that mutated.

I would recommend exploring lyme a little more. Igenex tests and reports more lyme specific bands. I resisted going down the lyme road. When I first came here right before my son was diagnosed with PANDAS 3.5 yrs ago, many recommended testing for lyme. I couldn't imagine why I should go down that road since my son had never knowingly been bitten by a tick. I also read frequently that if your child doesn't get better with PANDAS treatment, you should turn your attention to lyme. I ignored that very good advice. One year ago, I found a local doctor, not an LLMD, to treat my son after 2.5 years of treatment including IVIG twice and full dose augmentin for that period of time. She found ehrlichia and anaplasma through Quest testing and he's been treated for that for one year. He's much better. Yesterday, I finally saw an LLMD for myself after suspicioning for two years that what was diagnosed 17 yrs ago as rheumatoid arthritis was actually lyme disease. Here's why: in 17yrs, I have no joint damage. My hands look exactly the same. Ever seen someone's hands who actually has RA? I have seronegative RA. Never had any of the typical labs abnormal for RA factor, ANA, sed rate, CRP. I have many symptoms of lyme and when I had to stop taking Plaquenil for my RA, my health went downhill fast. Plaquenil is used in treating lyme. I theorize it kept things at bay all those years. Right now, I am not well. Stiff, hurt, fatigue, brain fog, word recall issues, weight gain, etc.... I had Igenex testing and I have positive bands both IgM and IgG. I took my first dose of doxy this morning. LLMD wants to see my son. He feels he also has lyme and probably bartonella from my description. He said most of the time when you have coinfections, you also have lyme. I have an Igenex kit he sent home so I can get my son tested through Igenex. It can't hurt and it might help.

There was no question we would not get rid of the cats. I see your cat is old too. It's very hard to find homes for old cats. One thing we are looking at is replacing all the upstairs carpeting with wood. Our cats do not go upstairs so it's been easy to keep the out of DS room.

We found DS has a cat allergy, very mild but still showed up on intradermal testing. Um, we have 3 cats. Here is the allergists answer because he knows his patients aren't going to get rid of the pet. Daily Claritin. Cats not allowed in DS room. Vacuum with a HEPA filter. It's been two years now, I think. Daily Claritin has helped a lot and DS is doing well. Our cats are old and infirm and we would not find them new homes. Promised allergist we would not get replacement cats when these pass away. He also has dust/mites allergy pretty significant. I encased all the mattresses and pillows in the house. Has feather allergy. Got rid of the down pillows on his bed. Finding a new doc and treating with double abx has been the single most significant thing for improvement.

My son had cold after cold after cold which resulted in sinus infection after sinus infection which resulted in PANDAS behaviors..... He was started on Claritin daily after he was diagnosed with allergies by an allergist (skin prick testing). I don't think he actually had cold after cold. It was his allergies. Now, when he gets a cold, it goes away quickly. His allergies (and mine) have been terrible this winter, the worst in a while. We both have dust/mite allergies. Claritin every day helps and when his nose gets stuffy, I use Flonase on him. We've weathered about 6 weeks of allergies/cold and so far, so good.

If I were him, I'd be doing the same. He's played the game and gotten nowhere. He's making a stand for all of us. If you can't speak about your own children and what you think the govt is doing to them without your consent, you might as well trash the constitution. Please sign the petition.

My son takes 2000IU a day of vit D and has for many years. He takes Rainbow Kids gummies, 1000IU per gummy. Even with that amount I think his last D3 was 50. I've read of issues with vit D supplementation but we've not seen it.

Its is a fact of life with long term abx. My son's teeth turn yellow. He's on augmentin and biaxin. They were yellow even on just augmentin. The yellow comes off with a teeth cleaning. The hygienist told me to put toothpaste on some gauze and rub it on his teeth. It really helps in between cleanings. Its not permanent. Tetracycline abx is another issue. It can permanently stain adult teeth that have not erupted in children younger than 8. Once kids are around 8, the adult teeth still in under the gumline have already developed fully and tetracycline won't permanently stain them.

The effects of long term abx is the potential for gut dysbiosis, getting C Diff, drug resistance, among others. Dr Latimer spoke to this at the PANS conference. She said in all the years she's been prescribing abx long term, she's seen only a couple cases of C Diff. She said that for some reason PANS kids seem to have guts of steel and wondered if their was a connection.

This is the Pelletier family, I think. She has mitochondrial disease. Glenn Beck has been advocating for the family on his show since he learned of the situation. I'm no Glenn Beck fan but I am grateful he is bringing attention to the situation.

We use Nordic Naturals Ultimate Omega. Not small. Another to try is Carlsons. Their liquid flavored fish oils taste good. They make good capsules too.

The good news is it appears your son was diagnosed quickly. The bad news is it takes time. The good news is, for those kids who are quickly diagnosed, they seem to recover better. My son's PANDAS began after a flumist when he was 5. I know you'd like these horrible tics to go away now. Reality is, it takes time to heal the brain and recuperate. Every child is different in their recovery. Have faith and a little patience. You will get there. Your son is in very good hands with dr Latimer.

Smarty- I taught 20 years, half in middle school and half in high school. When I read that an AP switches classes without a big battle and teacher was reported crying over your DS behavior, my radar says something is amiss. AP is apparently being proactive in switching at a very convenient time and it's an easy out vs waiting and then needing to switch in a month. He is very smart. I have a little experience with something kind of similar when I was a student in high school. We had a student teacher in American History. She was very unsure of herself and a total nerd in her manner and dress. That is a one way ticket to high school students causing you lots of grief, especially from girls. I was not one of those girls, however. My parents would not tolerate it and it was not my personality. Kids were causing her a little grief each day. Not something really overt but in the tone and comments and she would cry and ask the class why we were being so mean. My assigned seat was in the front row, right in front of my teachers desk. He was the AP, football coach, big guy. I was an athlete and went to an all day track meet. Next day, my friend who also went to track meet and I were called into AP/teachers office. He was not happy and he wanted to know why we had been so awful to his student teacher the previous day and made her cry. Imagine his surprise when we reminded him we had not been in school. She'd reported us as being the trouble makers. Apparently someone sat in our assigned seats and gave her grief while we were gone. In 20 years teaching, I've never seen another teacher cry. I've taught in 3 states, in inner city Detroit to a private college prep boarding school. My gut says the teacher is having difficulties. If you can't handle flippant comments from teenagers, find another profession.