nicklemama

I found my son could not maintain on Dr. Ks prophylactic dose. He does much better on treatment dose and that's what he's been on since IVIG last Nov. I have a local doc rxing it. We did the prophy dose after the first IVIG in. May 2011. He had all kinds of ups and downs, getting better when put on treatment dose after flares only to go up and down again on prophy and finally relapsed after pneumonia and requiring a second IVIG.

Personally, my son will never have another vax. Flumist vax set off his first big exacerbation. If you saw what I just saw about vaccines and read, you'd not do them. I'm still reeling from it and trying to digest it all. I've ordered the books. I think you can find some info on I tube. They are lengthy. I watched one. The Virus and the Vaccine by Debbie Bookchin and Jim Schumacher. (Also on utube, apparently) Dr Mary's Monkey by Edward Haslam I watched Dr Tents utube video of a lecture he gave titled The Exploding Autoimmune Epidemic, Dr Tent, It's Not Autoimmune, You Have a Virus. Want to guess where the virus came from? Polio vax.

See my private message.

Yes, fluconozole (diflucan) 100 mg, every other day. DS 9, 72 lbs.

Yes, thank you CHOP. Every supplement and vitamin my son takes has been at the recommendation of his MD doctor, who over sees them and changes them up from time to time. I agree, this is one more lesson on why we must stay away from hospitals unless absolutely necessary. And they think we're the crazy ones!

Having gone thru IVIG twice, we saw the same recovery each time.....no change for about a week, then got worse and slowly got better over many months time.

My son was on an Aug/doxy combo and we dropped the doxy as summer approached due to its sun sensitivity side effects and put him on Augmentin/biaxin combo. He's doing really well right now. He has a PANS dx plus anaplasma and ehrlichia dx. He's 9 and weighs 72 lbs. 500mg augmentin 2x day and 250mg biaxin 2x a day. You don't say the dosages of the supplements. My son does better with small doses of b12. Too much makes him irritable. Check your B12 dosage. If your son has MTHFR mutations, he should not take regular folic acid. He should take folinic acid. my doc recommends using Burbur and sublingual glutathione to detox when herxing. You have to order Burbur from Nutrimedix. I give DS a 30 mg glutathione sublingual melt and 10 drops of Burbur in 4 oz of water every 30 min until herx over. I'm a little surprised Dr K has him on amoxi since his go to abx is augmentin. My son is a Dr K patient and he's had IVIG in May 2011 and Nov 2012. I'd also recommend stopping all supplements and reintroducing one at a time for a week before adding another.

It is anti inflammatory and thought to be immune modulating. I'm not sure they know exactly what it does. It's used sometimes in Lyme treatment. It's an anti malarial and used sometimes to treat babesia. I took it for 13 years for what is/was thought to be rheumatoid arthritis. It worked very well. So well that I have no joint damage from my RA, dx'd in 1997. My hands look like everyone else's. It stopped my very painful hands and other joints from hurting and relieved the stiffness and apparently kept my joints from damage. I have been off it for 2.5 yrs now. There is a very important reason why you absolutely MUST have an eye exam BEFORE you start plaquenil. It can damage the retinas. I now have plaquenil retinal toxicity and have permanent damage to my retinas from prolonged use of plaquenil. Fortunately, I recognized the damage very early in its course so that while it's annoying it has not affected my vision to a degree that is disabling. My mother was rx'd plaquenil two years ago for Sjogrens. She recently noticed some eyesight problems and stopped the plaquenil and her eyesight has normalized. I'm not saying not to take it but I'm saying it is NOT for extended use. They will tell you it's a rare side effect but as we all know, it's only rare when it's not affecting you. As a side note, it's now questionable whether I've ever had RA. I'm currently two weeks off all meds so that I can have Igenex testing in two more weeks. So far, so good. It accumulates in the retinas, for some reason, which is why it can cause damage. Btw, the eye exam must be done by an ophthalmologist and it is covered by your health insurance. Be sure the dr codes it correctly. This is a well known adverse reaction and recognized by medical insurance vs vision insurance. Eye exams to examine the retinas must be done yearly when on plaquenil.

So sorry for your experience. Unfortunately, it's all too typical.

Exactly, low and slow. His doctor would really like him to do LDA. I'm not certain what else it can be used for.

That was a great review article. Thanks!

It's different than allergy shots but supposedly with the same effect. You do it every other month for about a year and then spread the doses out further until you are done in a few years just like regular allergy shots. It's integrative. It can be done for strep. My sons doing pretty well and I don't have the nerve to pull the trigger. My son does have allergies diagnosed thru the skin prick testing. Currently being controlled with daily Claritin and Flonase and Patanol eye drops when needed.

This won't be of help but my sons doctor wanted him to have LDA with strep but I have not gone forward with it. I just cannot do it.

My personal opinion is PANS is a form of autoimmune encephalitis. Dr. Chita Bhakta calls it that. I'm not sure enough testing has been done to definitively call it that.

My son raged because of a need ( in his mind) being denied, tied into OCD. Not being allowed to buy something that his mind has told him he must have is the primary source. These days, the raging episodes are much milder. I'd now call them mad episodes. He had one a few days ago. He wanted to buy a 99 cent app and we said no. He cried for a few minutes then hid behind the couch and refused to go upstairs to bed (it was 8pm). We made him go up and made him take a bath. He was mad but after his bath he apologized and was back to himself.

DS is compound heterozygous for MTHFR. We have been using a cream for about 6 months that has 5-HTP, l-theanine, l-tyrosine, GABA and magnesium in it. Rubbed on his back morning and bedtime. No side effects. I can't say for sure how much it's helping. We made several changes around that time with abx and adding enhansa. He's been doing really well. The cream is made by Neuro Biologix and called Calming Cream. It was formulated by a neurologist who's name escapes me right now.

IVIG is not a cure. It has helped DS and we would do it again, if we got to that point again. It did things abx alone did not. However, it will not keep your child from getting subsequent infections and exacerbating all over again. Perhaps because DS had underlying infections that were never treated he could not maintain. I do find at amazing to read reports from parents that their child was back 100% in a few days or weeks after IVIG. That has not been the case for our son. It has always been a slow recovery with a lot of ups and downs before things slowly got a lot better. We will try many other things before we do IVIG again, though. Steroids and t&a are on that list.

I think it's less likely you will get a math teacher based on the fact that math and science teachers are in demand and not as likely to be unemployed by school systems, especially during the day. History and English teachers are in greater supply. You might find a math teacher who is supplementing their income after school with home bound teaching. I'm not saying its impossible but I think its not likely a math teacher will roll up on homebound instruction.

My son was never able to hold recovery after IVIG with just the prophylactic augmentin. We also found he had the tick borne infections after IVIG # 2 and started treatment with an augmentin/biaxin combo. This is the best he's done since he got. He's not 100% but he's so much better. We've done the methylation supplementation for his mutations but treating the ehrlichia and anaplasma have had the most impact, along with adding enhansa. We're a long way from the end of treatment though. DS has had IVIG twice with Dr K.

Augmentin/biaxin combo and enhansa plus sublingual glutathione when he's getting worked up.

Prometrium, which is what I take, is an FDA approved bio identical progesterone available by prescription. I've had zero problems with it and it has helped me be able to fall asleep.

Just be aware that my son has never had a positive strep test. Treatment for PANS has significantly reduced his symptoms and he is tic free.

If your child turns out to have PANDAS, 10 days of amoxi will be nothing. My son has been on antibiotics for 3 years. The risk of further amplitude of PANDAS symptoms/behaviors is a lot worse than a 10 day course of amoxicillan.

Progesterone make you sleepy.

You might see small improvement in 10 days time. 10 days barely scratches the surface of PaNDAS. Amoxicillan is not particularly effective. Keep your appointment with the ped recommended. The neurologists view is quite common. Don't let that stop you from exploring PANDAS.