peglem

So many times we indulged "interests" that my daughter adopted, and fed them like crazy, only to realize later that it wasn't really interest or something she enjoyed- she was obsessed. While I agree with you on not giving Celexa, OCD does have an anxiety component to it. In fact, its how we distinguish (now) interests from obsessions. When its OC behavior, she can't stop herself from doing it and if she can't do it her anxiety goes through the roof. But, after awhile, even when she can do it, it becomes obvious that its not satisfying her and the obsession itself causes the anxiety. That being said, we tried a bunch of psych meds before we knew it was PANDAS causing it. None helped, some made it worse. Ultimately, the best mood stabilizer we ever found was zithromax.....

Well, even with loads of speech therapy my daughter is still nonverbal at age 14. (Apraxia of speech) I do suspect she had strep infections even in very early infancy...was not tested until age 10! I wonder how much of her troubles are the result of untreated strep early in life. Maybe the reason why strep is so rare in infants is because nobody looks for it. I see no reason why infants would have some special antistrep magic shield...doesn't make sense! Especially when you consider the literature on the dangers of neonates contracting strepB from the birth canal! And to conclude my rant: Isn't it frustrating that doctors will accept this completely unproven theory (no gabhs in infants), or really, univestigated theory, but something that has been investigated (although not completely) like PANDAS, they dismiss outright?

Here is our experience with T&A- copied from my response to another thread: My daughter had a tonsilectomy. She had chronic strep, or I suppose what would be considered carrier status. Anyway, it was assumed the T&A would rid her of the strep problems, so antibiotics were discontinued 10 days after surgery. Well, it didn't take care of the strep and while she was healing you couldn't exactly swab her sore throat. So, symptoms did flare...the worst I can ever remember her being. So, if I had to do it again, knowing what I know now, I wouldn't do it. But, not knowing what I know now, I'd do it, but keep up prophilactic antibiotics, at least until the throat is healed enough to swab again. This is only my experience. I know that tonsillectomy has worked out well for some. My daughter never had swollen, inflamed tonsils though. On the plus side- she no longer deals with constant sinus infections, so it wasn't a complete waste.

My child's doctor does creative dosing- to avoid liver trouble. We do 5 days on 250mg/day & then 7 days off. He did say I could use penvk on the off days if I wanted. I chose not to because I really want to work on yeast during her off days. When we 1st started this regimen I could usually see mild PANDAS symptoms returning on the 4th or 5th day off. (the dr. said, "good, that means it is clearing out of her system in between rounds) But by the 7th day off, she was getting toward the more severe end symptomwise. PANDAS behaviors disappeared again w/in 24 hrs of her first dose of the 5 days on. After about 8 months of this regimen, the symptoms on off days disappeared as well, except occaisionally if she is exposed to strep towards the end of her off days. We test liver every 6 months and so far, everything is great there. We have been doing this for nearly 18 months. I"m tempted to try taking her off antibiotics altogether this summer (how nice it would be to not have the yeast battle!). If she started symptoms again, we could always get her right back on them.

My daughter had a tonsilectomy. She had chronic strep, or I suppose what would be considered carrier status. Anyway, it was assumed the T&A would rid her of the strep problems, so antibiotics were discontinued 10 days after surgery. Well, it didn't take care of the strep and while she was healing you couldn't exactly swab her sore throat. So, symptoms did flare...the worst I can ever remember her being. So, if I had to do it again, knowing what I know now, I wouldn't do it. But, not knowing what I know now, I'd do it, but keep up prophilactic antibiotics, at least until the throat is healed enough to swab again. This is only my experience. I know that tonsillectomy has worked out well for some. My daughter never had swollen, inflamed tonsils though. On the plus side- she no longer deals with constant sinus infections, so it wasn't a complete waste.

My daughter had chronic strep with only behavioral symptoms (no swollen tonsils, fever, etc) until we put her on phrophilactic abx. Durinr that time her titers were checked 3 times and were low, except for once very slightly elevated ASO. I wonder if the Mono did something to quash your daughter's immune response. We did see an immunologist (who did not know much about PANDAS) and immune testing showed a poor antibody response. My daughter was given a pneumococal vaccine challenge and the first time the immune response was very poor. It was repeated and the second time the response was deemed adequate. We were told that this stimulated her immune system and that she would likely begin fighting off the strep. She didn't. It may also interest you that we did do a tonsillectomy and the chronic strep came back anyway. Here is an article on chronic neuroimmune disease that helped me gain a slight understanding of the immune system and what may be going on here. http://www.anapsid.org/cnd/diagnosis/cheneyis.html

Scarlet fever is not a strep infection of the skin, but a reaction to a toxin produced by strep so they should do a strep test to check for that. But, if I were you I'd get that checked out in addition to checking for a med reaction. A rare side effect of trileptal is Stevens-Johnson Syndrome which is a serious rash reaction that can be fatal if let go too long... google trileptal rash for more info.

My daughter's doc always did 2 swabs at the same time, 1 for rapid and the second in case the rapid comes up negative, to send for culture. The rapid is pretty accurate if it shows positive. You only need the culture to test for a false negative.

I just wanted to be clear that I'm not saying that what SHOULD be done in the case of PANDAS is to follow standard procedures of care. I think PANDAS falls into the area of atypical and understudied, in which case I think physicians and parents need to search out a solution that is (obviously) not covered under standard care. My point was that many doctors are not comfortable with this because of whatever oversight they have, (insurance, practice oversight) and because they are basically in unchartered waters and not sure of how to procede. There are a very few doctors who have stuck their necks out on this and decided to try things that make sense to try. Thank God for these doctors!

Yes, its called Scarlett Fever. But if the rash occured close to the time you started a new med-I'd sure be checking that out, especially with the prescribing physician. What was the new med? Some are more prone to cause rash than others and in some cases the rash can be a very serious reaction!

Here's the benefit of my hindsight: I'd get another throat culture @ week after abx whether there are symptoms or not. (maybe hard to get your doctor to do this if there are no symptoms) The reason is because its good to have a documented negative in the absence of symptoms. Then, if/when symptoms return (I'm talking PANDAS behaviors) get another throat swab (again regardless of typical symptoms). What you want is to establish a pattern of symptom exacerbations that can be linked to the strep as directly as possible. Having a negative in the absence of symptoms will help with this.

Gee, I really didn't have a problem with the article or the comments. PANDAS has not been proven to be an autoimmune disorder. No immune or other biological marker has been found as an identifier. It is a clinical dx...subjective, and there is no dx code established for it. Because GABHS is so prevalent in the pediatric population and because the temporal association between symptoms and infection is so variable...well, its hard to nail down. For my part, I still say we'd be better off studying PANDAS as a variant of Sydenham's, simply because the Sydenham's is already an accepted dx and the 2 are so similar. The controversy around PANDAS is why we have such trouble getting dx and treatment. Why have studies stopped? Two years ago, my daughter's pediatrician called the NIH to see if there were trials my daughter might qualify for (although she has other issues and would not likely qualify anyway) and was told there were no more PANDAS studies being conducted. My guess is the grant $ ran out and was not renewed. Doctors are not allowed to just do whatever they think is best for a patient. They are supposed to follow a "standard of care". They need to document and justify reasons for the course of treatment they prescribe or recommend. My daughter's pediatrician is willing to push the envelope a bit on that, but if they don't CYA- they could be subject to disciplinary actions. This is why you'll have them more often prescribe psych meds than supplements. Many know there are supplements out there that can help, but by and large, the studies to justify recommending them have not been done- studies on medication either have been done or the medication has been used so long that it is already considered standard practice.

Wow, its great to celebrate those bright spots! It may be a step towards recovery. Its sounds like you're pretty realistic though. Recovery, I think tends to be rather saw toothed- going good, going good, setback, improve, improve, setback. I'm not trying to discourage you, just giving you an idea what to expect. Hopefully the improvment will gain ground over the setbacks. But, really, really delight in the good things that happen!

None of the antibiotics we tried (pennicillan injection, penVK, amoxicillan, Keflex, augmentem, omnicef, bactrim, zithromax-I think that's all!) obliterated the strep-it came right back 3 to 4 days later. Zithromax was the only one, though, that really decreased the PANDAS behaviors noticeably and quickly while she was on it. So, zith is our choice for prophilaxis.

I agree with pmoreno. This behavior is compulsive and involuntary. Promising consequences good or bad- just increases the anxiety level and makes it worse. So, even if you promise her something good in return for not raging...rages will increase. She needs to know that you know she can't help it and you're just gonna help her get through it, no matter what. This behavior is scary for her, not just intrinsically, but also because she knows its irrational and doesn't get why its happening. Talk about it when she's calm and see if the 2 of you can develop strategies for dealing with it when she 1st feels it begin. The fact that she tried to deal with it by hitting the pillow means she is aware what's happening when it starts, so if the 2 of you start planning how to deal with it at that stage, she may be able to at least feel some control over it. You might also start observing to see if there are triggers (like with some seizures). She will be more susceptible during times of stress, but sometimes sudden changes in sensory stuff can trigger things as well. Like a flickering tv screen or even the computer. Stepping out of the bathtub, from hot to cold- things like that. As difficult as dealing with these rages is...the added stress of other people thinking she's just being a brat is just as difficult. Can they not see that it is like a seizure? It just grabs hold of her. Try not to worry about them so much. Do what you can to educate them, but if they will not believe, you have no control over that. I would try to minimize the homework. She may fall behind...but if the stress is too much, it just is. If she were ill with another disease (one more people have heard of and believe in) you'd say her health comes 1st and that's how it needs to be now. I really think these rages are the absolute worse part of this illness because the rest of the world misinterprets them so often and they have the greatest potential for destroying self esteem. You don't want your child to see themselves as a bad kid, but everybody else seems to.

Another idea is to wait out the 10 day course of the antibiotic, wait 5 days and retest for strep. If the Pen didn't clear it up, the doctor will likely be very open to trying a different abx.

This is typical for my child, and she has the chronic strep that I believe started years before we knew what was going on. When my daughter rages, I get her to a safe place (we have a nice soft piece of furniture that works great) and hold her (yes, she beats on me,but seems to try not to-just can't help the impulse) until it subsides. Before I started doing this, I talked to her about it (following a rage) and told her that I understand this happens to her w/o her wanting it and I was going to try to help her be safe. When I'm holding her (usually have to straddle her and hold her head-pin her upper arms with my elbows beside them.) she beats on my upper arms and shoulders. But If I quietly ask her to put her arms down, she'll do it. Seconds later it happens again. But she always tries to stop when i ask her. It took me a long time to figure out that she can't stop this from happening to her. Its not a temper tantrum just to get her own way. It may have been triggered by anxiety over not getting her own way, but once it gets to the rage stage-its not about that at all anymore. Her sympathetic nervous system has gone into overdrive and there's nothing she can do until the chemicals subside.

Allie's PCP is a DO (DO are also MDs though-they just have some kind of special training, don't ask me what) and so is her psychiatrist. This is the site has a DO locator in the upper right corner: http://www.osteopathic.org/ I don't know that all osteopathic doctor's are good- just, in my experience they are more likely to be good about listening and going a bit beyond the medical norm.

DAN docs are MDs, some do take insurance, but many of the tests and procedures they offer/use are not covered by insurance.

Regardless of whether you believe in vaccinating or not...isn't it appalling that a school board is passing judgement on whether your religious beliefs are sincere enough? Scary stuff.

I think the right doctor/specialist to dx PANDAS is one who believes in it, 1st of all, and eithe knows what treatments to try or will look in to finding out. You want a doctor who has an angel complex, rather than a God complex. My experience with my daughter (she already had an autism dx, which greatly complicated things): At age 10, I found an angel pediatrician who was willing to try to find what was causing her "autistic" behaviors. I had done some reading about PANDAS and asked him for a strep test just to check. He thought it highly unlikely-she had no classic strep symptoms-but, he complied and lo and behold, it was positive. We then spent a year or so trying to eradicate the strep, which promptly returned 3 to 4 days after finishing a course of abx (we tried almost all of them). He had heard of PANDAS, and did some research on his own, but lets face it, there is a lot of info out there and so many of the studies on what to do are inconclusive- Swedo's own recommendation was to treat the OCD psychiatrically, as you would any OCD. Without an RF, SC, or (I forget)-the kidney problem from the strep, the pediatrician could not justify to his superiors (or the insurance co.), the profilactic antibiotics. So, he sent us for back-up, first to an ENT, who agreed to a tonsilectomy, which didn't get rid of the strep, but has greatly reduced her sinus problems. The ENT did not believe in PANDAS, thought we should see a psychiatrist...Next we were sent to an immunologist, who had never heardof PANDAS, but we wanted to see if he could find a reason why my daughter's immune system was not fighting this off, and possibly get a recommendation for IVIG. The immune testing included a pneumovax challenge, which showed only a weak immune response. It was repeated with a stronger response the 2nd time. They claimed to have fixed her immune system by stimulating it to an adequate response. She was pronounced a strep "carrier" and we continued with bouts of chronic strep with the only symptoms being behavioral. Recommendation for IVIG was denied, saying it would just be giving her back what she already had. Next we saw a rheumatologist, who basically thought I was making everything up, had never heard of PANDAS and thought I should spend less time on the internet and just accept that my daughter is autistic and get over it. He did order some testing, but I refused to go back and see him again, so, picked up the test results and was referred to a pediatric rheumatologist (new, the only one in town). He'd sort of heard of PANDAS, but really seemed to be checking her out more for Rheumatoid arthritis (she has had some strange joint pains several years earlier). She doesn't have RA (I knew that) and he thought PANDAS was so rare that it would be some kind of once in a lifetime experience to actually find a case. He said it wasn't PANDAS because her ASO and antiDnase titers were not elevated. I just finally told him, "I don't care if you call it PANDAS or not, what we know for sure is she has something that causes these bizarre behaviors and whatever it is seems to respond to antibiotics." So, he said he was willing to prescibe a 6 month trial of prophilactic abx. (penVK). So that was all the regular pediatrician needed was the back up of a specialist to put my daughter on proph. abx. We started with the penvk, but while on that the streppy behaviors came back and a rapid strep came back with a weak positive. So, I was given zith and told to resume the penVK when that was finished. Her improvement on zith was drastic! So, back we went to the pediatrician and he agreed to use zith prophilactically. My daughter still doesn't have an official dx of PANDAS, but the treatment is helping so I don't care. She spent so many years being miserable before we even knew about the strep problem (she had never once been tested for strep before age 10, even when she did have classic symptoms). I look at pictures of her over those terrible years...she was so ill looking and so sad. She even got kicked out of a private autism school because of her "oppositional behaviors." We tried risperdal, which made her worse, though it seemed to have a placebo effect on the school people. In the final analysis, zithromax has been the best at mood stabilizing. Oh, yeah, somewhere in there we also saw a neurologist-not for the strep though, she was having terrible headaches with extreme photophobia- turns out she was also having seizures.

S-Boulardii is good for fighting clostridia. My daughter is on Nystatin for yeast and so far it has not been a problem for her.

On the OCD tendencies, I think perhaps you're just more aware of OCD now. But also, I think its normal for people to have some things that they are overly picky about. If your wanting things "just so" generates alot of anxiety or interferes with functioning then it could be considered pathological. But, otherwise, just quirky. For instance, I have this thing about making sure the eggs left in the carton are arranged symetrically and centered (so the carton doesn't tip and maybe fall when its picked up). But, I don't spend much time thinking about it and I don't get upset if the arrangement isn't possible or if somebody leaves it asymetrical. (I do notice, though, and fix it) I'm not sure I understand your question about phenotypes.

I haven't had this with zith, but omnicef does give my daughter tummy aches. Here's what I do with the zith, though: I give it with food, so just before or just after dinner, and so there will be at least 2 hours before bedtime. That's so I can give the probiotics at bedtime-give them a chance to multiply overnight and repopulate the intestine. Because my daughter is on a on/off cycle with the zith-during the on days- I usually give s-boulardii at night, on the off days, probiotic. She is, however, also on Nystatin to kill yeast.