peglem

We do IVIG every 3 weeks and are still on zith long term.

In March, my daughter was having symptoms that were unusual for her- upon investigation her TSH was high and when I researched her symptoms fit well with that. But, a few days later, we went to the emergency room and were admitted overnight to the hospital. Her thyroid levels had normalized by that time. What I have seen since then is a resurfacing of those symptoms (but not as drastic) w/in the week before her period. Then the symptoms seem to reverse during her period. I don't know whether to pursue this w/ endocrinology- will they say its just normal for a teen until her body adjusts to the hormonal changes of menstruation? Or will they not even pick up the fluctuations w/ blood tests and end up doing a lot of blood work for nothing? We have checked with the endo a few times over the years and have had this elevated TSH before, but w/o abnormal T3 and/or T4 levels, the endo seems to think its meaningless.

Cod liver oil. You're supposed to prime the system with it before adding bethanechol- that's according to Dr. Megson's paper on it. http://www.megson.com/readings/MedicalHypothesis.pdf

Me too. We went on and off twice. Both times going on we got the nice improvements for awhile. Going off, not much difference, but went off during rough times, to see if the bethanechol was contributory. I'm thinking of trying to go back on to see if we get the improvements. She has mostly stayed on the CLO, and I do notice a downward difference when she doesn't get that. I wonder if the Bethanechol just unblocks something initially and its the unblocking that triggers improvement.

2 completely normal MRIs here as well.

We used CLO and bethanechol years before we knew PANDAS. Initially, we see a very prominent increase in awareness and ability to communicate(is even able to say a few words), better sleep, better appetite, better mood, improved fine motor. But, the improvement is not sustained.

We recently trialed off of our zith, at the request of the rheumy, since we also had a positive strep test while on it. The 1st 2 days off were fine...by the fourth day we saw a rapid downward spiral. By the 6th day, I'd had enough and put her back on. We're slowly coming back up from there. I don't know what the zith is doing for her, but something!

Those who got strep while on abx, was that by culture or just rapid?

Hmmm, seems to me like this can happen w/ scarlet fever?

I don't have any real answers for you, but wanted to respond to this: The titers (ASO and AntiDnase) are a measurement of the immune response to strep exotoxins, not the bacteria. And these titers do not have an adverse effect on the body at all- they are a healthy and appropriate response to rid the body of those toxins. At the same time there are many, many antigens presented on strep bacteria that the immune system could still be responding to (if the strep is still present). So, you could still be having a strep based autoimmune response, even if those strep titers are not elevated. I wonder if the "allergies" are misdx'd infections, if they clear with abx?

Are you implying that undiagnosed PANDAS is really autism? No, just that I think untreated PANDAS during infancy and early childhood development can pervert normal development (because normal information processing is disrupted) causing the symptoms that are labeled as autism. And treatment for PANDAS cannot restore development that never occurred in the 1st place, even if the reason for the lack of development is removed. When a child gets PANDAS after completing early childhood development you'd expect treatment to restored a normal developmental level. But if the child was untreated throughout the developmental years, you wouldn't expect treatment to make them developmentally normal. This is what occurred with my daughter (we think-hindsight being what it is). So its not enough for us to just treat "residual OCD" because she doesn't have anything to replace it with. We have to work on social/emotional development because it fell victim to PANDAS.

The only thing I have found that works for my daughter is oral diflucan. Ointments and creams do not work because I cannot apply them internally.

I just wanted to add-as far as the ASD- IMHO, if PANDAS strikes during critical periods of social/emotional/language development and is not treated quickly enough, it can mess up development in those areas so that even when the PANDAS is successfully treated (the cause for the lack of development is ameliorated) the child still is lacking in development in those areas=developmental delays=ASD.

The tests are not commercially available. She tested CamK II activity levels, and tested for several antineuronal antibodies: anti-lysoganglioside, antitubulin, and antibodies to dopamine 1 and dopamine 2 receptors.

I'm curious as to why your doctor will not prescribe zith?

Have you run a post abx culture to be sure the strep actually cleared? If he is still + you can probably get some more abx.

Has she started menstruation yet, or are you anticipating her 1st period? Just wondering how you know she's ready any day?

http://www.cellsignal.com/reference/pathway/MAPK_G_Protein.html OMG! I'll never figure this out! But CamKII is in there somewhere!

I don't know enough to address your LD concerns, but on the PANDAS front, I'd get a throat swab (even w/o typical strep symptoms) before doing abx. As far as what abx, it seems most of our PANDAS kiddos do best on either azithromycin or augmentin (extended release especially).

I was under the impression that the skin test was IgA response and blood test was IgG? Although it seems like IgE would have to be involved somewhere. Anyway, my daughter tests negative for allergy both ways- and barely reacted to the histamine prick. But she has very low IgA and IgE.

Dr. Mary Megson has a paper on the use of bethanechol and CLO to unblock the g-protein pathways. I don't remember anymore, but seems like some stuff I read indicated that CamKII is involved in those g-protein pathways...I don't understand any of the studies (including the Megson paper) well enough to connect all the dots.

I'm a little puzzled here. My daughter had a terrible response to galantamine (acetylcholinesterase inhibiter) but a very positive response to behanechol, a Ach mimetic. But it seems like inhibiting the enzyme that breaks down Ach should have a similar effect to increasing Ach. What am I missing? Seems like this could be an important clue as to what is happening with my daughter.

I find it hard to believe a small amount of bactrim would do much to fight bartonella. Just my opinion, but I think the steroid has reduced the production of auto-antibodies...like its supposed to.

I don't think Dr.C's lab is currently accepting blood samples. I think if you get the labs w/in a week or so of starting the zith it will not make much of a difference.

ditto on the boulardii. Another product we have used successfully is Kirkman's Yeast-Aid.