nicklemama

My son has had IVIG twice with Dr K. I do not find him to be rude. He is to the point and does not engage in chatter and small talk. He is all business. I would say blunt. He has his way of doing things PANDAS wise and that is what he will stick to.

I understand your frustration with costs of healthcare going up. Ours has been going up for 10 years. Each year the premium increases and the deductibles and out of pocket increases. My dh's employer self insures and they are passing more and more of the healthcare costs to employees. Add to that the doctors we see who take no insurance and it does add up. I have some suggestions for remedies but that's not for this particular message board. I am grateful to have health insurance where many others had none. I am grateful that the AHA has gotten rid of preexisting condition clauses, otherwise, my son would not be insurable except through an employer group policy.

The system was broken well before Obama. He's not responsible for the training of the current batch of doctors. He does not hold sway over the AAP. Any problems lies solely with the medical profession itself. They don't get to escape responsibility by throwing blame on a politician.

I don't beat myself up too much. I trusted doctors. Now, I know better. It was a rude awakening. It puts me (and the rest of us here) in an odd position with the far vast majority. I'm sure my friends think I've really lost it. I'll never trust doctors again. They have done such a poor job on my son I'll never forgive them. He's been misdiagnosed too many times. For things other than PANS, unfortunately. Many no longer go into it to help people. They do it for the money, the ego, the social status. They are not like doctors used to be when I was a child.

I wish I'd been smarter about vaccines when DS was a baby.

I would give the steroid. It will tamp down any autoimmine reaction. My son is given clindamycin for 10 days. Two or three days ahead of any dental appointment and then the rest after the appointment. This is in addition to the abx he's already on.

If you are seeing Dr Bock, you are in great hands.

Its not a cure for PANS/PANDAS. There may be a few who had the one and done IVIG but they are in the minority. IVIG is a treatment when things are really tough. It can tamp things down, but not always. Sadly, I've just been around the PANDAS/PANS community for more than 5 years and curing it is a rare thing. Controlling, yes. I think those that catch it and treat it very early are more likely to having lasting results. That is not a message I wanted to hear 4 years ago, when we first learned of PANDAS. I have hope that continuing research will offer better treatment options. Things have already moved along on that front in the past 4 years. Our kids can't live in a bubble and they will go on to have infections that trigger PANS. As their immune systems mature and understanding of it advances, things get better. My son has been treated by two of the biggest names in PANDAS/PANS and they couldn't get him well. A little known, local doctor who is MAPS trained and is now an LLMD has done wonders.

Bartonella causes psychiatric symptoms. With a positive lyme test, I recommend you see an LLMD. Two very big name PANDAS docs could not get my son to any sort of lasting wellness. An LLMD who was fairly new to the game has done just that.

My son had IVIG twice, 19 months apart. The first time, he had slow but steady improvement and it got him really well. It didn't last. He starred flaring again and everything slowly was creeping back. He caught pneumonia and fell apart, hence the second IVIG. It didn't work. IVIG is not permanent. It is not a cure. It's expensive, even if your insurance covers it. Ours did and it was still about 5k out of our pockets each time. I would have better spent the money seeing a doctor that would test everything, then I would have known my son had Lyme disease and coinfections and that treating that would heal him to the point of living a very normal life. I do not believe he is back 100%. After a little more than five years of this, I am starting to accept that this disease will have a lasting effect on my son. It has changed him. He will never be the easy going, carefree little boy he was prior. When something this devastating strikes at age 5, I don't think there is any way it will not have some sort of permanent effect. That said, I have every hope he will live a perfectly typical life as an adult. He's doing well at age 11.

My son was high for CamKII, tubulin and D1. He has lyme triggered PANS. No strep.

I just posted about this on the other thread. My son started Trasfer Factor Lyme Plus 2.5 weeks ago. It brought hm out of remission and he started raging again. Stopped it a few days ago. He wasn't sleeping well. Interestingly, he was fine all day and when it was nearing bedtime, Boom. Then he was up many times during the night. Morning, he was fine again. Dr had me giving him one capsule at bedtime. I know this sounds crazy but since I have a whole bottle, I'm going to try it on myself. I also have lyme.

I just pulled my son off Transfer Factor LymePlus. He was on it 2.5 weeks. It brought him out of remission and he started raging again. I know it sounds crazy but I'm going to try it since I paid for it. I also have lyme.

2% chance of relapse after first treatment? I'm wonder where they got those stats. I'd say they are way off. Of course we are a mostly homogeneous group here with relapsing kids.

I'm not sure about the accuracy. The big if is IF the infection causing the PANS is taken care of. Very small chance of relapse? Mmmmmmm, not so sure about that. Maybe in a child who had PANS caught and treated right away. If it goes long enough to become autoimmune, I believe you are stuck with it. 2% with complete remission sounds right to me. 25% have minor symptoms, I agree. Most of us here are the rest. We are the 73% who have not found complete remission or have only minor symptoms. It has taken me 5 years to get my son to have only minor symptoms. That's the reality of this disease.

Klaire Thera Detoxification Support

Maybe it's the type of probiotic. I'm no expert but there are types of probiotics that form lactic acid. One or some of the lacto strains are the culprit. Some people are sensitive to it. My son takes a Klaire probiotic with 50 billion CFU's/pill. He gets 100 billion a day. No tics. It has Lactobacillus rhamnosus, which has a lot of research behind it, Lactobacillus casei, and Bifodobacterium bifidum, which also has some research behind it. I would look into the various strains in the probiotic vs looking at the entire probiotic.

If you can afford it it does help. But as you have experienced, it's not one and done and it's not curative.

I think it's lyme and/or coinfections. I don't think you need all the various testing done. If your LLMD will treat, do it. My son was diagnosed with lyme and a couple coinfections two years ago, after two years of not getting well with PANS treatment, including IVIG twice. So for two years he's been treated and doing well. Last month it was time for bloodwork. We saw his doc two weeks ago. His ehrlichia titers, which have never gone down, had a four fold increase, which indicates active infection, and his C4a went from normal to 6000. In two years of abx, we have not eliminated ehrlichia. This stuff just doesn't go away easily. I don't see Aspergers behaviors in what you've described above. I wouldn't chance betting the behaviors you are seeing are all teen hormones and defiance. My son would call us idiot and stupid and stomp around slamming doors and be angry. He was 5,6,7,8. At 11, he does not do this anymore.

I watched yesterday. Eye opening, although I pretty much knew the main story. It's the details. I'm tired of it all but how do you ever win against the major corporations and all their money and influence?

There is no point in doing IVIG until all infections are cleared. We've done IVIG twice. It's not a cure. My son had lyme and wasn't tested. After all that money and time, two years, we finally got some healing by treating lyme. Augmentin will not get rid of lyme on its own. My son was on it for the first two years.

You've got to start somewhere. If you start with the basic understanding and doctors can get onboard,mother they are prepared to move the paradigm a bit further and explore other triggers. I had my two seconds of fame. I'm standing behind Beth when she is seated at a table!

Worsening before getting better may be a herx reaction from bacterial die off. Many people mistakenly assume their child can't handle the antibiotic and give up on it.

I have experience with having a child with allergies to dust/mites and cats, we have two, also! We encased his mattress, got rid of the down pillows on his bed (allergic feathers too) and encased the new ones. No cats in his bedroom. He takes claritin every day. Things are much better with his allergies. There are things his allergist gave us to do to help inside our home. We still have our cats. They are 17 and 15 now. Getting rid of them was not an option. Our son is also doing really well now. It was one part of the puzzle.

Until you can get a prescription for something else, ibuprofen. At 11, he is likely old enough to take 1 200mg tab. My son is 11 and he weighs enough. Give it every 5 hours. You can do this for a couple of days.