nicklemama

I explain to the vet your child has immune issues and have them test for toxoplasmosis. I don't think you have go into details.

"Although people can be infected through contact with cat feces, the far more common way for someone to have contact with the parasite that causes toxoplasmosis is through unhygienic handling of raw or undercooked meat, drinking contaminated water and exposure to garden soil or sandboxes where infected cats may have defecated. People do not get the disease through direct contact with the cat himself." Just found this at ASPCA.org It also said that cats only shed the eggs for about two weeks after the infection. After that time, their immune systems rid them of the disease. Indoor cats would not be exposed to toxoplasmosis unless they were killing and eating mice coming in from outside or bringing in an actively infected catm they could get it from the shared litter box.

For the past two nights, my DS has been complaining of pain in the bottoms of his feet. It's a full moon. He asked us last night if it was growing pains. We told him it probably was. I'm not going to tell him what I think it really is from. He had a lot of foot pain before we began PANS treatment. Now we know he has coinfections that are being treated. He has occasional foot pain. I finally managed to remember if it was a full moon or not.

Cats are generally asymptomatic for toxoplasmosis. Cats in a high rise NY apartment are not at risk of getting new toxo infections. I will hav e to look it up and see if they are carriers or if they kick the infection.

Good question. The generics may have the same ingredients but they are not identical in their makeup but they are supposed to have equivalent action. In the world of rheumatoid arthritis, Watson is a generic known for its efficacy to be equal to its brand name Minocin. Other generic brands are less effective. I get Eatson brand minocycline from CVS.

S&S, you have hit on a topic near and dear to me and I have struggling thoughts about lately. I think its a good conversation. We are outdoorsy people. I've spent my entire life camping, hiking, biking, canoeing, skiing(water and snow), etc..... I've always had pets and currently have 3 cats and a dog. We went camping recently and for the first time, I had thoughts about considering giving it up. I've also been considering not having any more pets when the current batch pass away. My cats are seniors now. It would drastically change my life/lifestyle. Not sure I'll go through with it but I am certainly giving it thought these days. My son has tick born infections and PANS. It has had such a huge impact on our lives, its made me reconsider things.

That is a very low dose of lamictal.. My son took lamictal at 100 mgs twice a day, and he was 50 lbs at the time.

My sons adventitious/chorea like movements move from his feet to his head. They literally seem to roll upward with this snake like or hula like movements ending in his head rocking back and forth. It's hard to explain. They are not jerky at all. Dr K called them adventitious movements. If walking, he would skip once and then they would roll upward.

Ditto above. Make sure you didn't bring them in your luggage. Get all your luggage outside and fumigate it. Wash bedding and clothes in hot water. Bed bugs feed and then you won't see bites for a few days until they feed again. Bites are typically in a line. They walk in a straight line and bite. A friend of mine had bed bugs. Luckily a small case. She hired a lady who had a bed bug sniffing dog. No, I'm not making this up. The dog alerted on a a piece of luggage her husband had taken on a business trip. They threw it out. Bed bug experts came to look in her house but never found any. They set out traps. Bed bugs feed at night and rest during the day under mattresses and in nooks and crannies like the moulding on your wall near the floor, in drawers and the like. It took about a month before they got no more bites. The exterminator told her they must have picked up only a few males. When they died out, no more bed bugs. That's not usually how it happens though. The females lay eggs and the infestation grows.

Cat scratch fever is caused by Bartonella henslae. You get it by being bitten or scratched by a cat. Cats get it from fleas. It's also found in ticks. From what I read, kittens are more likely to transmit bartonella than adult cats. Adult cats own immune systems usually rid the cat of the infection. I have 3 indoor cats. I would urge everyone not to go and dump your cat.

The toxoplasma eggs are found in the feces of cats. That's how you get toxoplasmosis.....changing the litter box or otherwise somehow ingesting the eggs. Most people have been exposed to toxoplasma in their lives. When you are a child you play outside in sand, sand boxes, dirt, etc.... And any animal that has toxoplasma has 'planted' the eggs. Cats get it from eating infected rodents. That's the life cycle. So whether or not you have had cats in your life, you quite possibly have had toxoplasma and didn't know it. Indoor only cats are much less likely to infect you with toxoplasma but you are still at risk for infection. Eliminating rodents, which is not going to happen, would stop the spread of toxoplasma.

I would guess its herxing/detox issues. DS's doc recommends lots of water with lemon, burbur, sublingual glutathione. I would keep giving and work on the detox. Burbur is only available from Nutramedix. I ordered it online and I've used it on DS. I've also used sublingual glutathione.

Interesting. Dr K has never mentioned this to us in any of our appointments. DS is an ethnic Russian and he was born in Russia.

This place is always such a wealth of information. Thank you.

I need recommendations for PANDAS docs in the NE and specifically Boston for a friend who's 24 yo son has PANDAS. I've given the usual suspects Dr L, B and T. Not sure if they all see adults and she needs some primary care suggestions. If there are others than the 'big three' in the East that you can recommend, I'd love to pass that info on. I've recommended she attend the conference too. She's realized her son has PANDAS recently. He's a college grad, super smart and had a great job and PANDAs has reared its ugly head. After I suggested this is not his first episode, she thought back through the years and sees he's had it since childhood. Apparently, it wasn't too, too bad back then but its having a major impact now. Thanks.

Those band 41s can be indicative of coinfections. My DSs was positive. He came up positive for ehrlichia and anaplasma thru Quest and we are now treating for those coinfections and he's a ton better than he was and he had made a lot gains from PANS treatment.

My DS9 has been on daily Claritin for 1.5 yrs now. He has not had an ear or sinus infection since we started it. He sees an allergist who 'prescribed' it. It's OTC.

Thanks! I just downloaded it.

Our sons pediatrician ordered the MTHFR mutations testing for both 1298 and 677. It's a blood test. I requested it be done. He sees a biomedical MD for treating methylation issues. Most run of the mill MDs will not know how to treat.

You are correct, you've likely been dealing with this longer. We have been dealing with it longer too. We suspect it started at 3.5. He had episodes that he got over and returned to full function. Your ped is sort of correct, they seem to get over each episode. My experience is each time, the episode get s worse when untreated, goes longer and eventually, the child no longer returns to full function. Their baseline behavior gets higher. The big one caught our attention and we knew something was drastically wrong but no doctor knew exactly what it was. Some told us aspergers, sensory processing disorder, etc.... He did get better but never was the same. The next one never really resolved itself and 7 months later, he was diagnosed by Dr T. Dr K thinks strep always starts the PANDAS and after that any infection can flare it. You may not have been aware of the initial episode with strep. My son has never had a known strep infection but he had ear infections and sinus infections, probably strep related but never tested for strep. We have since discovered methylation issues in our son and are treating that. He also has been discovered to have ehrlichia, anaplasma and babesia infections from a tick bite even though we've never known him to have been bitten by a tick. It's been a long road, but our son, now 9.5, is doing much better.

Listen to your PCP and keep that appt. Youve been given professional advice. If the ID doc says anything, you can tell him you followed your PCP advice.

My son was diagnosed at 6, after a year of this. It was a very difficult time and I lost a ton of weight. It nearly did me in. Everyone here has been in your shoes. It can and it does get better with treatment. That may not seem like much help when things are so bad right now. Eight days is not enough time to see any sort of major improvement. Hang in there. You are in good hands with Drs T and K. They have both seen my son and we've had IVIG with Dr K twice. You seem to have caught this fairly early on and that's to your advantage. We've been dealing with PANS for nearly four yrs now. It's much more manageable now, although flares are still not fun, they are nowhere near as bad as they were before diagnosis. Hang in there.

I concur. Call the station and tell them what you think.

Darn. I have a friend who has recovered from Guillian Barre. She has a son I suspect has a mild case of PANDAS. She has those suspicions, as well. Btw, your inbox is full, so you can't receive any more pm's.

Keep in mind that many of our children have more than one presentation. My son has tics, OCD, ADHD and rage. I believe it's due to the area of the brain being inflamed rather than genetic in origin.