peglem

Ugh, don't know how I screwed this up! I looked over several years of labs (until recently I'd say she has been in exacerbation) and I'd never noticed before, but her lymphocytes are consistently high. They are only slightly out of range. Everything else is normal. Absolutes are all in range. For some reason, I checked neutrophils instead of lymphocytes on the poll- dang! Trying to do too many things at one time, I guess.

Dr. Cunningham does not write out scripts or even order blood work. She just sends the kit for the draw. Its up to the study participant to figure out how to get the blood drawn.

Do you mean ever? My daughter has had a lot of testing done...I'll look at her records and see what I can find.

We've found that benedril brings on fight or flight meltdowns, but my daughter does not have allergies, and most likely did not have high histamine levels. We tried it for sleep.

I don't really think anybody knows the answer to these questions. The non-contagious, benign state of strep carriage is an assumption doctors have made, based on experience, I suppose. It hasn't been studied much. But, it seems that many of our PANDAS kids react to strep carriers by demonstrating PANDAS symptoms. I think that sheds doubt on it being non-contagious.

Does anybody know more about this replication study? My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents. Just sayin'. I understand- you have to choose subjects that you are certain about- to reduce variables. Its the reason my child will never qualify for studies, she just has too many variables. But, in practical application of what is learned from studies, doctors need to be able to interpret not just the objective testing and data, but consider how it applies in individual cases. Otherwise, the only people who will benefit from what is learned from the studies, is those who would qualify for the study in the 1st place, and that is denying care and treatment to a large population of people who need that help. My daughter's pediatrician believes she has a type of post-infectious encephalitis. The difference that he sees is that her immune system, is not dealing appropriately with infectious agents, so that she has maintained a chronic, low level (compared to say meningitis) encephalitic state most of her life. He says we cannot possibly keep her strep free, MP free, pathogen free, because these germs are everywhere in the environment, on our skin, respiratory system, etc. So he sees correcting the immune function as the key to helping my daughter with this issue. Somehow, when you don't diddle with the question of is it PANDAS or not...but just try to define what is happening in the individual case and what treatment is likely to help- it just makes more sense to me that way.

From the link above: Does anybody know more about this replication study?

Loved Look Me in the Eye!

We have not been on clindamycin. Last december we did 10 days of rifampin/augmentin combo and since then have been on 500mg zith every other day (after a 5 straight day loading period). She has been steadily improving ever since. I don't know if she's still a carrier or not, or how one would test for that while on abx. Her pediatrician says that strep is so prevalent in the environment that we will not be able to eradicate strep from her because her deficient immune system is not able to fight it effectively. We are waiting and waiting and waiting on the immunologist for IVIG for the immune deficiency...I've called and left messages everyday for 2 weeks! But, I'm afraid the dose that the immuno wants to give, every 3 weeks (just under .5g/kg) will not be enough. We'll see how it goes. She's supposed to go in for dental cleaning/checkup in April, which has me nervous. Exacerbation after dental procedure last Oct. 1st was pretty bad. This is only a checkup, so probably no problem. But, still....

Back when we were treating strep episodically, 3 days off antibiotics was enough time for the behaviors to come back full force and when we'd go back in for a strep test- even just 3 days off abx, my daughter would test positive for strep. It took only 3 days after most abx, but 5 days with zithromax for the strep to return. My daughter is a carrier so I think we were not really getting rid of the strep in the 1st place.

Canary effect: When somebody 1st gets an invader/infection- strep for instance, the immune system has to make antibodies "from scratch," meaning the circulating, undifferentiated immune cells have to investigate the new microbe and fashion "soldiers" to attack it effectively- according to proteins (antigens) it detects on the invader. It produces massive amounts of "soldiers," specific for that microbe (more or less- maybe different microbes presenting similar antigens) until it has eradicated the invader. Then, it stores some copies of the soldiers- to make attacking that microbe quicker and easier the next time it is detected in the body and to hopefully eradicate it before it can take hold and cause infection/damage. In PANDAS, one or more of those soldiers is activating basal ganglia cells, causing neuropsychiatric symptions. So, upon just simple exposure to strepA- the immune system recognizes the invader and responds with an army of quickly replicated soldiers. This keeps your child from getting actually infected with strep- but increases the soldiers who can't tell the difference between the invader and your basal ganglia. So the neurological symptoms present, w/o an actual infection occurring. So, like the canary in the mine, showing that there are toxic gases, your child's behaviors show there is strep in the environment.

Allie once had to go off risperdal cold turkey- switching psychiatrists, insurance crap- I just couldn't get any for her. The first week was sheer ######. But it was followed by 2 of the best weeks she's ever had in her life! Then she got strep again....

Initially the lamictal was prescribed by the neuro for some "seizure-like" episodes and severe headaches/photophobia that presented after Allie's T&A. Those did go away. I don't know how much success was due to lamictal and how much was due to other PANDAS treatment. Later, the psychiatrist increased her dosage, using it as a mood stabilizer- we saw a very clear improvement with the increase (nothing else had changed). It was clear improvement, but not dramatic- it helped a little, but when you're where we were, that little bit makes a difference. Now that we are seeing such dramatic improvements with the zith, we decided to try going off lamictal, and we're doing fine with that so far. So, I wouldn't rave over lamictal's effectiveness for us, but it is really the only psych med that we found helpful at all. (other than valium, but we don't like to use that too much) There is some evidence that lamictal slightly suppresses the immune system, so that may account for its helpfulness.

"Canary" reaction is when your child presents with PANDAS symptoms simply from strep in the environment. So, for instance, your PANDAS child's symptoms may actually be an indication that their sibling has strep.

Rages and ODD are not untypical in PANDAS.

Lack of titers was the bane of our early attempts at getting medical help. Her pediatrician was not concerned about the low titers because we did really have many, many positive RSTs that correlated with behavioral exacerbations. But the specialists he sent us to for help dismissed everything, saying she was just a strep carrier and since she was not getting infections it was not a problem, and since she was a carrier, of course she is going to test positive. The fact that her behavior improved on antibiotics was overlooked completely. In the end, it was the Cunningham results that really helped us- not so much the very high CamKII activity, but the high antiD2- an auto-antibody that indisputably should not be there. We really had no improvement until the actual carrier state was addressed with rifampin. Her pediatrician and I believe that she was reacting to chronic slow release of strep from epithelial cells- dental work, especially caused explosive symptoms.

I have an autistic teenager with PANDAS. In hindsight, I have come to believe that the autism was actually caused by the PANDAS interfering with development. So, taking care of the PANDAS will stop the interference, but not restore development that never happened or happened incorrectly. So, I think we'll have a lot of work on development, particularly social/emotional development, after the PANDAS is resolved. We're using RDI (relationship Development Intervention) for that. Its a program that works on development by building neural connections the same way that it happens in typical development, just amplifying the process. We've seen a lot of therapy and behavioral programs over the years and RDI is the only program I've found that really addresses the development itself, instead of just correcting/modifying behavior.

Firefly, Have you considered looking into medical causes for your son's behaviors? PANDAS/PITANDS maybe something you'd want to rule out.

On the valerian- try 1 capsule, and if that doesn't seem to be enough, try 2. BTW, valerian root works great for menstrual cramps.

Arizona doesn't do DST, the only problem is adjusting to new time differences between us and the rest of the country.

Much as I hate the thought of my child being on a benzodiazipine, we would have never survived this long without Clonazepam .5mg. Benzo's are fast acting anti-anxiety medications, not SSRI's. The effects are felt within a half hour or less. My son is only given it when he's really anxious over something. He started taking this during his last exacerbation 3 years ago and I took a lot of heat about it stating that I was giving him something that could be addictive. I'm here to tell you that when his symptoms remit and the anxiety abates, Clonazepam is the last thing he wants. We would be lost without the option of this medication and I thank God daily for the science that created it and the help it brings him in a crisis. Try everything, but don't let anyone beat you up about using this class of medication if needed. Best wishes, Gat's mom We do have an "as needed" prescription for diazepam (valium)....I used to be very, very reluctant to use it...now I feel a bit guilty for not giving it more, as there were times that she really suffered because I hated to give it. She really doesn't need it very much anymore...and at this point the valerian root works about as well.

If it doesn't have to be associated with an infectious trigger or be autoimmune, then what sets it apart from other causes of neuropsychiatric symptoms?`

I'm currently weening my daughter's lamictal. She was taking 150mg AM and 100mg PM. The psychiatrist said we could reduce 50 mg/day for 2 weeks and then go down another 50, etc. I'm going slower than that- cutting only 25mg at a time and waiting at least 2 weeks before making another cut. I wait longer than that if she doesn't seem stable. So, if you think she's going through withdrawal, try cutting less and going slower.

Valerian root...tastes/smells very nasty, but really helps w/ antsy pants and relaxing.

If I could choose (and I can't) I would present 4 stories - 15 min each - with 4 or so specialists adding commentaries, along with parents 1. An otherwise healthy child who gets a sudden onset of a tic (like Lauren) 2. An otherwise healthy child who develops OCD 3. A child with autism who develops a marked worsening of symptoms 4. A child who develops severe PANDAS and the "exorcist syndrome" I think this would really show the range of this condition. Keep the "does PANDAS exist" controversy out of it .... By the end of the show, that should be self-evident Dr. T #3 - I have never heard this type discussed (other than by me) and I think this is a group who is typically overlooked because the symptoms are so often attributed to autism. I would loved to see this represented and was pleasantly surprised to see that you've considered this group!