tpotter

Are you supporting the gut with probiotics? We used saccromyces boullardi for about 6 years, per Dr. K (he told us to, and we stuck with it.) Plus, we also have continued doing probiotics, which are critical to protect the gut. But, using the right probiotic is critical.

Good friend of mine growing up is completely incapacitated from severe joint and muscle pain, including back and neck. I suggested lyme, erlichiosis, et al. She is barely able to get out of bed, and is retired on disability. Anyone who knows of a good LLMD in the Sacramento area, please PM me.

Just noticed chemar's mentioning that your son had improvement when you were on vacation. That would make me wonder if there was something in the environment at home, and the first thing that comes to my mind is mold. We certainly had it, and didn't know. Also, is there someone around him who is sick...strep, mycoP, etc....that might be triggering him?

Also, just curious if you have ruled out mycoP and bartonella. They can cause mood problems/rages, and the prozac may have been masking it.

Cool that a local ped. neurologist practices holistic medicine But, I'm curious why you have to get your DS more stable before starting with her? Is that what she said? I would think what she is able to do is to get him more stable?

I also like the idea of writing the letter, but I would also suggest you get a 2nd person to read it over, to make sure you keep it short, and to the point. I had a similar appointment with a local neurologist, who had actually written a part of a textbook article on PANDAS (he showed it to my one session.) He clearly believed it could be there, but then went off on me (even knowing before I came, that I was coming to see if he could carry out PEX or IVIG that had been pre-approved elsewhere, but for various reasons, couldn't be carried out. When DS and I walked out of the office, both of us were speechless, and neither of us are EVERY speechless Anyway, I wrote a letter, had a friend review it (she got it down to approximately 4 or 5 sentences). I told him that it was ok for him to have his opinion, but that we did not deserve to be treated that way, and that if he knew that he was not going to be willing to treat my son, he should have just told us before we even came...thus not wasting any of our times. He actually apologized! OK...that being said. T.Anna...have you looked into bartonella, babesia and mycoP. I can't stress this enough, because you mentioned the rages. All 3 are endemic, especially if you live on the east coast. Other than mycoP, they are very difficult to get an accurate reading,,,DS20, after open heart surgery this year to replace an aortic valve, had a Galaxy Dx test (3 draw...to catch the life cycle) + tested his valve tissue. Only 1 out of 9 different ways of testing the blood (the PCR DNA on the 2nd day of testing) came back positive. Since it was testing DNA...it's 100% accurate. Otherwise, we would have had a false negative. And, then there's the alternate tx route. Have you considered that? We, and I know others, have gotten tremendous results from doing alternative tx, like homeopathy, diet, ayurvedic, acupuncture, chiropractics, ART, etc. Plus, we also have done the allopathic (both my kids had 1 PEX, and approximately 7 IVIG's, and abx.) We didn't really start seeing results until we added in the complimentary (alternative treatments.) PM me if you want more info.

Agreed 100% with JAG10. We definitely have him as part of our team. He even arranged IVIG for my DS locally, per another PANS specialist's protocol.

DH and I started to go, but he got home from work late (after I asked him at least 4 times to be home by 5:00...not LEAVING at 5:00. Anyway, GPS said there was a traffic problem enroute, and we would have been very late, so we aborted, and went and got some amazing chocolate sorbet (GF, DF, no corn syrup, and kosher) instead. Anyway, did anyone get there, and could they please share what Dr. Breitchwerdt had to say about Bartonella? Thanks.

What is his white blood cell count, liver enzymes and spleen? Babesia can cause the WBC to go up, liver enzymes up, and spleen enlarged.

Glad you're seeing an LLMD. Keep in mind that steroids can make lyme worse. Could it be the steroids?

I would agree with this. And, if there is something there, that could explain why there was head banging. It might be hurting, feel awful, etc.

This is a good idea. And, in some cases he actually does see pediatrics. My son was 16 when he went to see Dr. N, but I do believe that originally it was going to be tied with (as a co-visit) with an pediatric epilepsy dr, and for some reason THEY decided to cancel the co-tx, and just had my DS come in straight to Dr. N (at his SI office...which turned out to be more convenient for us, anyway.) But, we were dealing with seizures, in addition to PANS. Those of you who have also seen Dr. N...does he only see people with seizures?

I certainly didn't mean it negatively. Simply that when I took my son in to him, I told him that my son had seizures and PANS. He did not appear to take the PANS term positively, so I just simply went the route of seizures and autoimmune and encephalitis. He actually said that he did not know exactly what to think about PANDAS/PANS. Also, that, although he was doing better, I wanted to make sure that in the future we wouldn't have difficulty getting him treated again, like we had in the past before we went to him, and that's why I was bringing him to Dr. N. We actually went 3 times (not just 1), and my DS also had an in-home eeg. When Dr. N actually saw that my DS was having seizures (no one really believed us), he was surprised, and said that he wanted him to go as an in-patient and do the eeg again. I got very sick, and couldn't take him, and after that, we decided to go an alternative route. We have had tremendous results with the route we have taken for the entire family. Now, my DS sees a local neurologist who takes our insurance to control the seizures (has been under control for several years now.) So, again, I'm not saying that Dr. N is bad...in fact, exactly the opposite. It's just that he was not as open to me about the PANS term, and my understanding was that he didn't call it that, but definitely treats for encephalitis, (which is what PANS causes, anyway.) That being said, Ophelia22, I do think that Dr. N would be a good choice for you.

Ditto. and, also please, please look for Bartonella, Babesia, and Mycoplasma Pneumonia. And, also look for mold as a possible trigger. The other 3 can cause these rages. PM me for more info if you want.

Yes, it is the best way to test. DS20 just had open heart surgery for an aortic valve replacement. We suspected that bart might have been a part of the cause, so I called our vet, and asked who we should use. He gave me the number of the vet lab in NJ, who confirmed (I had already found online Galaxy Labs), that they were the way to go. I also consulted with Dr. Breitschwerdt by telephone. In the end, we did the triple draw, and also sent a tissue sample from the valve. Luckily, the valve was negative, but the blood test was positive (this means there is bart in his blood, but it apparently did not affect the heart. Now, the triple draw actually tests the blood, plasma, and does a PCR-DNA culture. So, over 3 different draws X 3 different ways of testing, you get a total of 9 different test results. Only one of my son's (one of the PCR DNA...I think on the 2nd draw) came back positive. But, positive is positive. We are also treating him holistically now, but will keep an eye on this.

He does not treat PANDAS, per se, but he does test for NMDA receptor if he thinks it is warranted. That's why he was really trying to make sure that all the symptoms led up to it, first, which included the seizures. I think he is an excellent dr. It was just that we no longer needed him.

I will definitely try to get there. It's about 1 1/2 hours from me.

We saw Dr. N for several visits, and he was actually very surprised when my DS turned out to really have seizures (no one ever believed it, despite previous EEG's. We were supposed to go back for an in-hospital eeg, but I got sick, and didn't want to expose either myself or other children to what I had (mycoP really flared.) We didn't go back, because we started a different avenue of tx (ART) for my son. Dr. N is a very meticulous dr, and I agree that he does all the work.

I don't want to sound negative, but I have heard that Dr. N is not taking new patients. I don't think he covers the ER anyway. I agree with PowPow and T.Anna...find a single neurologist who can look into the seizures, and I would also ask about a sleep study. Once they have looked at the seizures part, I would see where you can get with encephalitis, but once again, I would not mention PANDAS/PANS. They do "get" seizures and sleep disorders (maybe the seizures are keeping her from sleeping, or maybe she has sleep apnea or something.)

ART (Klinghardt) practioners actually do treat the detox, parasites, etc. (getting the body prepared) before using the heavy guns. Just to let you know.

Why would a family doc suspect this enough to test for it?

Just curious why you are at risk of clotting?

I have to wonder if your child is being exposed to something by someone? When you go on vacation, is there anyone that he typically goes along who is not typically around him? Or, alternatively, are they trying to do too much, so the stress level goes up?

I agree with Julia Faith. ART is a great way to go. Things are done slightly differently with different ART practioners, but overall it's the same concept, and they do test every organ for stress, and there truly is no guesswork. In fact, everything our ART told us was going on has been backed up eventually by medical testing! So, it really truly is quite accurate. It is also quite costly, but if you consider the fact that you may not need any other doctor, it might not be so difficult. IMHO you would definitely not be sorry if you went to Klinghardt (do you live near him?) If not, you might be able to find an ART dr. closer to your home.

I agree with both...it isn't necessary to only use Dr. Klinghart, though. He treats/dx using ART, and there are ART practioners out there. Check his website. Unless you are on the NIH study, though, I wouldn't suggest NIH. ART is a GREAT way, IMHO to find out what is wrong with your child. Then, as far as tx is concerned, you can either choose a Klinghart route, or something else, but at least find out what is going on. And, as far as the question about an encephalitis workup....no they wouldn't necessarily have done it in the past. A spinal tap, brain MRI, and some other things are used. But, PANS causes inflammation in the basal ganglia, and inflammation of the brain is encephalitis and/or encephalopathy. Doctors understand the generic term, but not the PANS term, and you will probably get further using the generic term...at least in my experience. I have had no arguments with docs since I started using that term. Then, if they ask, I explain what the infectious triggers were.