nicklemama

Some doctors think they may be linked. They are still separate entities at this point in time. My son displayed many behaviors of aspergers after his initial PANDAS exacerbation. He was, in fact, diagnosed as aspergers by a neuropsychologist. Treatment has resolved his behaviors but it took a while. He was neurotypical before his first PAMDAS episode.

Our bodies metabolize tryptophan from the foods we eat. Tryptophan is synthesized into serotonin and serotonin is synthesize into melatonin. If your body is not able to metabolize tryptophan from the foods you eat you will have low serotonin and hence low melatonin. My son was found to have very low levels of tryptophan. No wonder he had behaviors and was unable to fall asleep.

If it's been a few years since you've had testing with Dr T there have been things added and he now includes a whole list of viruses. That's worth checking plus I'd urge you to test Lyme and coinfections again. My son was originally diagnosed by Dr T and had the testing turn up absolutely negative for everything. He had IVIG twice but still would flare and have a roller coaster ride. We retested this pat spring with his expanded testing through our local doctor. He popped up quite high for CMV and he was positive for the tick borne diseases of ehrlichia and anaplasma which we've been treating since and he's been doing great. He was exposed to two friends ar a birthday party last Sunday who turned out to have strep on Monday and we've not seen a blip at all.

I'd do ten on amoxi and then ten on cephalexin. Back to back.

Come join us in the main PANDAS /PANS forum. My sons PANS was triggered by flumist. I just returned from the conference where it was highly recommended to get the flu vax but do not use the nasal flumist. Personally, I will not do either, given my experience. Dr Swedo said there will be a flare after the injectable vaccine and it will need to be treated. If your child is being followed and treated by someone that really knows PANDAS then you might consider it. If you are new to PANDAS and are not getting good treatment and your child is not stable yet, I'd avoid it like the plague. Just my two cents.

Slowly is typical. You are probably not going to see some overnight vast improvement.

Yes. It's called PANS when there is a nonstrep trigger. My son was triggered by a flumist vaccine. We have found tick borne infections of ehrlichia and anaplasma that he is currently being treated for. Caught and treated early, I believe you can lessen the symptoms, shorten the duration and possibly avoid future flares. My son went more than a yr without diagnosis and treatment. Four yrs later and three yrs of treatment and he is doing extremely well but not 100%. He has been on abx for three yrs plus other things we've added like methylation and supplements to decrease inflammation and IVIG twice.

Amoxi is not particularly effective on strep. My friend with 3 kids, no pandas, cannot clear strep in them on amoxi. Your description sounds exactly like PANDAS/PANS. Rising titers of strep does not prove PANDAS. It shows where your child is infection wise. A percentage of the population never even have titers to strep when infected. My son has never had strep titers or a positive throat culture. He has PANS rather than PANDAS. my son has been on antibiotics for 3 yrs without a break. We have addressed methylation and other things but those don't get him close to 100% functioning. In flares, the recommendation is 30 days of treatment with abx and prophylactic dosing until post college if living in a dorm type setting.

Absolutely.

That's a common story around here, asymptomatic but positive for strep. I do not believe it means carrier. Your child isn't truly asymptomatic. The tics are your child's symptoms.

You can look for providers in your area(if there are any) on www.pandasnetwork.org. Many of us have to travel for help. That's the reality. I would try to work to convince your doctor first. We just had a PANDAS/PANS conference in Rhode Island last weekend that I attended. Google for the NEPandas conference. The slides from most of the experts presentations are there. Load them onto a flash drive and give it to your doctor and ask him to contact Dr Swedo at the NIMH. At the website you can copy the individual information and qualifications and give it to your doctor so he knows their credentials.

Xymogen has biotin in their ALAmax CR.

Curcumin as an antiinflammatory. Dr Walters said you get diminishing returns with each IVIG so be judicious in when you choose the first. Plasmapheresis is the best choice but do to the difficulty of finding hospitals equipped to do it, they have settled on pursuing IVIG as the choice. I thnk that is a mistake. It's hard for me to accept that my son must have second best because it's too hard to get. I think they underestimate parents. If they would come out and promote plasmapheresis as the top choice, I think we as parents could start a movement to that, as well. It's covered by insurance. It requires hospitalization and a pic line. Maybe more expensive but I think it was Dr Latimer that said no more risky when you take into consideration IVIG is not without risk. It provides near instantaneous improvement, as reported by Dr Latimer. No waiting months to a year for maximum benefit. One of them gave a statistic on the incidence of siblings with PANS. it's high. I think in the 40% range but someone who took notes can correct that.

We've done it twice and I'd say it was worth it but it not a cure. Most of the doctors use IVIG as part of their treatment plan but it's not a first line treatment. That's what they all said. One of them, either Latimer or Dr Jolan Walters said you get diminishing returns on each subsequent IVIG after the first. We've followed that pattern. It also takes a long time to see full effects, as in a year, if your child does not re-exacerbate. I've seen that too.

Dr Agalliu's paper is very soon. I think they actually said any day now.

I am not experienced enough to even begin to comment on the planned treatment. I would tell you that we treated my son for 2.5 yrs for PANS including IVIG twice. We still did not get the results we were looking for, although we did get improvement (he was really bad). I took him to a doc that tested for Lyme and coinfections (never previously done) and he came up positive for ehrlichia and anaplasma through quest. We started treatment in March and he's doing great. If the treatment you've been doing isn't working, my experience is to look for other infections and treat what you find. Your child has clearly had exposure to Lyme and is still having problems. I'd treat.

I really don't know about parasites but. Y son was tested for heavy metals and he did not have any.

If a person is not symptomatic I don't think an llmd would recommend treatment. There are plenty of people walking around with Lyme, unknowingly, who's immune systems are handling it.

I am so glad I went. I reconnected with Dedee and her husband, whom I had previously met in Indianapolis at a parents meeting. She is the nicest southern lady you could ever meet. We had ourselves some good laughs. Meeting parents was the highlight. Dedee has your head done blowed up this morning?

We did it when it was a research study. It's hard to exactly compare her ratings system then and now but he was likely and I spoke to Dr Cunningham personally. My son had no infections pop up on Dr T's testing (not nearly as comprehensive as it is now) so it was validating to me. Ask yourself why you are perusing it. Is it for you or is it to help get medical care. It's a lot of money and I'd have a clear medical reason for doing so.

My son was perfectly healthy, no issues when he fell off the cliff. I thought he had a brain tumor.

If she is out of control and difficult to live with and its affecting quality of life, my opinion is that is when you would want to seek IVIG. I believe it was Dr Latimer who said you get diminishing returns on repeat IVIG and my experience is just that.

A DVD of the conference will be made available for a fee. It was video taped professionally. PANS family has a videography business and volunteered the equipment and their nonPANS videographer volunteered his time. Cost will be kept to a minimum.

I have been able to completely eliminate ibuprofen and only use for a few days of a flare.

The doctors and researchers sat through all the presentations on Sat and were there until the later part of Sun, when the presentations were very parent directed. I am so glad I went. There are no words to describe how powerful it was to be there. I managed to have personal conversations with Dr Swedo, Dr Cunningham, Dr T, Dr Agalliu, his post doc research assistant Erica, Dr Latimer, Beth Maloney, Dr Hubbuch (LLMD), and Diana Pohlman. Everyone was very friendly and welcoming. No big egos. All were very open to conversation. And I met some PANDAS Parents. Loved it.