nicklemama

Good catch SF Mom. The dose is too low. My 9yo, 67lb son is taking augmentin 500mg twice a day and biaxin 250mg twice a day.

Yes, it does not sound right. It would be more likely that the person signed a form from Dr K acknowledging that the procedure may not be covered by insurance and you are the one responsible for contacting insurance to find out. DS has had two ivig's with Dr K. They were both covered, the last one in Nov. He never spoke with our insurance. Ok, now that sounds right. He does not submit to insurance. The surgical center he works with does it. He does submit any appointments with him to your insurance.

Augmentin and biaxin. Augmentin and doxy works well too but we r off that for the summer due to sun sensitivity potential.

That quote is what they will bill your insurance. If you pay upfront, they will give you an uninsured price. If insurance pays, you may get some refund. We've done IVIG with Dr K twice. Ask them what the charge will be for paying up front. It's based on weight. I'm guessing it should be in the $6k range plus Dr K's fee.

I would definitely follow and report the food poisoning to the doc and health dept. When stomach illnesses hit our family, it does nothing to DS. No flares in symptoms. DS has had 3-4 and usually dh and I have the illness following DS. Give him a respiratory infection and boom.

Don't get too excited. He's at Hopkins and we know what the neurologists at Hopkins think about PANDAS.

Nothing on the ranbaxy list that DS has taken. However, I saw something startling. Ranbaxy makes the plaquenil I took for 15 yrs and I am certain I have taken ranbaxy's plaquenil at times. I don't know how much or when or the frequency that I took the ranbaxy's plaquenil. I don't know if I can track it down for confirmation. The reason it's so startling to me is because I developed a rare side effect of plaquenil. The medication accumulated in my retinas and I developed plaquenil retinal toxicity and I now have retinal damage. It appears that the only ranbaxy abx sold in the US is minocycline.

I never dreamed my son would have infections caused by ticks because we've never known him to ever have been bitten by a tick. However, in hindsight, it makes sense. My son has never tested positive for strep nor have I ever suspected him to have strep. His PANS started after a Flumist vax. He has had pneumonia, probably myco P but wasn't tested until months after the fact, so he only showed IgG titers, which have always been previously negative. Now he has tested positive for ehrlichia and anaplasma and is in current treatment. Suspected babesia will be treated in the future. Ehrlichia is most common in the south central states, including Oklahoma, where our families live and where we visit each year and where DS goes four wheeling with his grandpa. It's obvious to me, he was bitten by a tick while on one of our trips to Oklahoma. We also take him to see a biomed doc. He is compound heterozygous for the MTHFR mutations. We are treating that. After two rounds of IVIG, 18 months apart and treatment for MTHFR and ehrlichia/anaplasma, I can say he's doing better than he has in a very long time.

Sed rates are not the be all end all. I have rheumatoid arthritis and I've never had an abnormal sed rate, so a normal sed rate is not indicative. An abnormally high one is. I had been giving ibuprofen. It does work. I started DS on Enhansa a bit more than 3 wks ago and Ive seen positive results, so far.

Is doryx different than doxy? DS's generic doxy is a capsule. I think capsules are easier to swallow. We took DS off doxy for the summer. We switched to biaxin. He's also on augmentin and he's doing really well. I'd ask a pharmacist about crushing doryx. They know a lo more about meds than docs do.

I took it for about 6 months. Didn't do a thing. I have rheumatoid arthritis. I'd read it was helpful.

Ask this question tomorrow night (Mon) of Susanah Cahalan on the radio pandas show at 9pm EST. She's one of the guests and wrote the book Brain On Fire about her experience having NMDAR encephalitis.

Enhansa/curcumin has phenols in it. If your child has a problem with phenols, enhansa and other curcumins may make them hyper. Kids on the spectrum seem to have problems with phenols and their moms give them something to counteract the phenols in enhansa. I can't remember the exact name but its something like no phenol. DS started enhansa about three weeks ago. I upped his dose yesterday to 450mg.

Good finds!

I've been giving DS melatonin since 2009, when he first got sick at age 5. His ped, 3 neurologists, psychiatrist, psychologist and neuropsychologist recommended it. We started a half a milligram. He stayed at this level for 3 yrs. I upped it last year to 1 mg since it was somewhat less effective and he'd grown so much. Late last yr, he caught pneumonia and had an exacerbation. I started giving 2mg for several months until things were better. He's back to one milligram. Also, a yr ago, we started seeing a biomedical doc and he recommended adding 1000mg of taurine at bedtime. Works very well. I give it a half hour before bed. If I give it too early, it's not effective at all. DS will outlast its effects. Recommend checking ferritin levels too. DS's have been low since it was checked in 2010. I mean really low. Since we started supplementing with Ferrochel, an iron supplement, DS has been sleeping a lot better. Low ferritin levels is associated with restless leg syndrome. For unknown reasons, many PANS kids are low in ferritin. Maybe due to coinfections like babesia.

Hmmm...my son is doing as well as he has in so long I can't remember. He is on augmentin/biaxin combo for PANS/ coinfections and diflucan and enhansa. We aren't even at max dose of enhansa and he takes diflucan EOD. I hate putting that in writing. It always bites me in the butt.

I would say its a die off reaction. My son had this at age 3 when given amoxicillan for an ear infection. We thought it was an intolerance to amoxi and he was not given any penicillin abx until diagnosed with PANS at age 6. After discussing his previous reaction, we decided to give augmentin a try. Lots of improvement. I can't say there was no rage reaction because he was already a raging mess at dx.

Upper Midwest, if you don't need palate expanders, just basic braces to straighten teeth, you are looking at ~4k. Many of DS friends and classmates already have braces, at 9. I had a discussion with his dentist last week at his cleaning. We are fortunate. DS will not need braces, if he does at all, until he's closer to 12 and he has more permanent teeth. They are actually coming in pretty straight and his bite is good. Who knew the boy that sucked his thumb until he was 6 would have straight teeth!

I agree with Mayzoo, I think you are seeing a herx reaction. You are killing something with it. Enhansa is reportedly an antiviral, anti yeast and antibacterial. I don't know if the website at Lee Silsby says this or not. I know they tout its anti inflammatory properties. If you could hang in there a bit, you might see results. Are you doing anything for the herx like lots of lemon water? DS' s doctor recommends 10 drops of burbur in 4 oz of water and sublingual glutathione every 15 minutes until the herx is over. We haven't had to do this. Last I reported, it had been a week and it was time to up the dose. I doubled, as instructed, to 150mg twice a day, from 150mg once a day. What I am seeing is pudding poop. Been that way for a week but finally getting better. I was supposed to up his dose to 300mg in the morning and 150mg at dinner but I am not going to up the dose until his poop has returned to normal and give that some time.

I would recommend finding someone who will test for Lyme and coinfections. After 2.5 yrs of treating PANDAS, including IVIG twice with Dr K, we found our son has ehrlichia, anaplasma, and babesia. He has very low ferritin levels. No one ever felt this was problematic. New doctor we are seeing told me babesia uses iron and we are treating for low iron and will commence with babesia treatment after treating ehrlichia and anaplasma, which we are currently doing. My son had terrible pains in his feet, was easily fatigued, could no longer go hiking. We would end up having to carry him. His head would sweat terribly during the night. I mean his hair was soaked. Most of these symptoms went away after abx and IVIG but the low ferritin and sometimes fatigue has always been there since he got sick with PANDAS. He is now 9. This all started when he was 5 and he was diagnosed at 6. He had the Cunningham test about 6 weeks after diagnosis, when he was being treated and doing much better. He was within the PANDAS range. This was in 2010, when it was still an investigative study. Some of the values of normal vs PANDAS seem to have changed but the CaM values appear to be the same, if you drop 100 from your score.

This is long overdue. I am very happy to see the tide turning.

I am very disappointed to read this. We had this test done in 2010 when it was experimental and it cost us $400. I had no idea then that was just the tip of the iceburg in out of pocket costs. Frankly, at nearly $1000, I would not bother. It makes me question if the lab will survive. Who is going to pay for that test?

I don't think anyone is going to be out the entire $1000. You pay a deposit of $420. If insurance covers the entire $1000, you would get a refund. If insurance covers nothing, you owe nothing more. This is typical of companies where insurance coverage is not a sure thing. The food allergy testing and other testing done on my DS required a deposit. I owed nothing more and the companies took on the risk of getting insurance payment or not. If you are considering the Cunningham test, call them and inquire.

No constipation and now we are having the opposite after upping his dose of enhansa. The Ferrochel is a different form of iron than what you see in the pharmacy aisle. His doc carries it but its available online. It's very gentle. He's had no stomach issues taking it.

DS is on daily Claritin. Has been for more than a yr. Takes Flonase as needed. Had allergy testing. Allergic to dust/dustmites tree pollen, feathers, outdoor mold, cats and guinea pigs.