nicklemama

Did Lee Silsby confirm maltodextrin in Enhansa? It is not listed on the ingredients.

See my private message to you by looking in the top right hand corner. I'm from MI.

I do not think its foolish thought. It just takes a long time, especially if your child was not diagnosed and treated right away. My son was 5 when it started. Took a year to diagnose. Treated with abx and IVIG. Found lyme a year ago and started treating that and now he's doing great. Its a long road to getting better for most. You have to dig around and find what works for your child. One size does not fit all as far as PANS is concerned.

I sent you a PM. Look up at the top right hand corner to access private messages. I think trying a different antibiotic is a good next step.

I have no idea if it builds up or is cumulative. How old is your son? My son is 10, weighs 75lbs and takes 600mg twice a day.

There are actually some PANS doctors treating young adults. You seem to be going in the right direction. Get those tonsils out. Our son's ENT is seeing improvement in his PANS patients that remove the tonsils. Its not a cure but all of his patients have seen some form of improvement, from mild improvement to major improvement. If you have a history of tick bites, I'd recommend consulting with an LLMD, as well. My son has been found to have lyme disease.

Second the idea to contact Diana Pohlman.

I would recommend finding an ILADS trained LLMD. You should have some choices in your area. I have been on doxy for approximately 9 weeks now. I have a red rash on my neck that is itching and driving me crazy. The tip of my nose looks like Rudolph too. Saw my LLMD today and i'm switchng to minocycline for the summer ( I have Lyme, as well as my 10 yr old PANS son). Did I read it correctly that a doctor has diagnosed your 12 yr old daughter with chronic fatigue syndrome? I'm no doctor but I find it incredible that a doctor would diagnose chronic fatigue in a child and not try to get to the bottom of it. I wasn't aware children could be diagnosed with CFS. I was diagnosed with rheumatoid arthtritis, chronic fatigue and fibromyalgia. My fatigue is getting much better with Lyme treatment and my joint pain is nearly gone. My son was treated for PANS for 2.5 years and he did get better but he did not get really well until appropriate Lyme treatment. I have been treated for Lyme for 9 weeks and I can't begin to tell you how much better I feel. If your child is not getting better with PANS treatment by some of the best PANS minds, move to Lyme treatment. Her Igenex is highly suspicious looking.

I would not do it. Full disclosure my son is currently fully vaxed at age 10. If I could have a redo, he would not receive any modified live vaccinations and I would only give one vax at a time spaced out with all the others. I had chicken pox as a child. I had a particularly nasty case as I also had eczema as a child. While it was uncomfortable I did not have resulting scars nor any other permanent impairment. I now have lifelong immunity. The same cannot be said of the vaccinated. There are diseases to vax for and there are diseases that are safer, IMO, to have vs be vaccinated for in the western world of medicine and measles, mumps, rubella and chicken pox are among them. I am not a doctor, however. Keep that in mind.

DS was started off with low dosing on Enhansa. He took 150mg, once a day, for a week, then upped to 150mg twice a day, then he went up by 150mg a day for a week until he reached 600mg twice a day. I was able to taper him off Motrin while upping his Enhansa. I don't know what to attribute to the Enhansa and what to attribute to the biaxin that was added to his augmentin but he's been on a trajectory up since then and has been very stable for about 6 months. He went the entire winter without a flare (knock on wood).

I think a really high C4a indicates mold. Lower but still high numbers indicate Lyme. I have a high C4a but not astronomically high. I also have lyme. I'm about 11 weeks into treatment and I'm feeling better. I have more of the arthritic form of chronic lyme.

I would have him worked up and treated for PANS. I don't know what kinds of PANS behaviors your other child had but mine was very oppositional, angry, irritable, raging. He did manage to hold the worst of it in at school but not all PANS kids can. If it walks like a duck and it acts like a duck, maybe it is a duck......or in this case PANS.

I'm giving it to my son purely for its antiinflammatory properties. I can't say it's been immune modulating but he's been on it a year and he's had the best year since PANS started 4.5 years ago.

Really good article. Now, if Stanford would expand their clinic. I wonder if they also treat PANS and not just strep triggered illness?

Sent you a pm. Look at the top right hand side of this page.

Three plus years on abx. Takes Klaire Thera Detoxification Support probiotic, 2 capsules with 100 billion total and a saccromyces boulliardi every day. Testing shows he is fine. Also takesDiflucan every other day. Enhansa. He eats a greek yogurt nearly every day.

Sorry you are here. Your description sounds like PANDAS. I would find a knowledgeable doctor and make an appt. Dr K accepted our insurance last time we saw him but that was over a year ago now. We have BCBS. Last I knew that was the only insurance he accepted. Currently, we pay out of pocket to see a local doctor that does not accept any insurance and sadly, this is the rule rather than the exception. PANDAS docs tend to not take insurance.

Someone on this forum did this for their PANDAS child a year or two ago. I cannot remember who it was.

Twice. The first time, in 2011. DS was 7. It was really rocky the first three months post, then things got better. He was doing pretty well when he got pneumonia 18 months later and things went rapidly down hill. He had IVIG #2 in Nov 2012. Another rocky recovery and we didn't get the results we did after the first. Found out he had ehrlichia and anaplasma 4 months after IVIG #2 and started treatment. Found out he has/had lyme a few weeks ago. He's done really well this past year after treatment for his coinfections, which also treat lyme. Dr. K did both his IVIG's.

It's antiinflammatory. My son has been taking fish oil since he was a toddler. We upped the dosing when PANS hit. He takes 1000 mg. Nordic Naturals Ultimate Omega. It has a good dose of EPA, which was recommended by PANS doc.

I have a fear of posting this. Don't want to jinx things. After 4.5 years of dealing with this, DS, 10 has been very stable for his longest stretch. We have weathered a stomach virus, 3 colds w/ a terrible cough and a viral illness of some sort that produced a fever of 102. All this without even a blip this winter season. He had sudden onset with every listed symptom. Severe but has always managed to go and do well academically in school. IVIG twice. The big turn around has come after treatment for ehrlichia and anaplasma for the past year with augmentin and biaxin that also treated the Lyme we just got a strong positive on thru Igenex this week. He is not showing active infection but is 5 bands positive IgG. I'm not ready to say he's completely out of the woods but it's the first winter he's not flaired since this started in Oct 2009.

I'm certain we've all been there. I used to live in absolute fear. I'm better because my son is better. It hasn't completely gone away though. Every cough. Every twitch. Every time he gets angry. A thought goes through my mind. At least now it doesn't send my heart racing and get me going into panic mode.

Two steps forward, one step back. That was our experience.

Snake oil, hemp oil, who cares as long as it works!

Call a meeting and lay it on the line now. You can get a reduced workload.