familyof4 Posted January 8, 2010 Report Posted January 8, 2010 I read with interest in another post on the forum about problems after a Tonsilectomy. Someone responded that anesthesia can impact the blood brain barrier. I was horrified when I read this. My son has been put under for various procedures 6 times before the age of 5. First PANDAS episode was at the age of 4 1/2. Could being put under so many times left him exposed to PANDAS? I forsee at least two times in the next year that he might have to be put under again, (Another upper endoscopy and tooth extractions). I am wondering if I should be avoiding this at all costs? When I met with my pediatrician last week to let her know I wanted to start treating this more aggressively I brought her tons of info on PANDAS. When I mentioned the BBB she said "That closes by the age of 2". She watched the video I brought her of my son and said "I don't know about the PANDAS diagnosis anymore - it looks like a movement disorder." UGH!! I have not yet done the Cunningham bloodwork - my pediatrician really wants it to verify PANDAS. I am not sure the $400 we spend on it would alter treatment plans in anyway so I am hesitant to spend the money. She is only willing to entertain a 5 day steriod burst and 30 days of antibiotics at this point. Saying anything else is too risky. We are meeting with Dr. Smith in Denver for a consult on the 18th. Depending on how that goes we will either start treatment of some sort or we might end up flying east over spring break to see either Dr K., Dr L., or Dr. T. I would think a 30 day steriod taper down and prophalatic antibiotics would be less risk than IVIG. Is it going to do him any good to do IVIG and not have him on long term antibiotics?
sf_mom Posted January 8, 2010 Report Posted January 8, 2010 You should contact Elizabeth.... known as ElizabethandKeith on the forum. There are two great Dr.'s in the Denver area that can provide you the type of care you need. Dr. Smith being one of them. I think long term antibiotics is critical until the immune system can bounce back with any treatment plan you decide. -Wendy
dcmom Posted January 8, 2010 Report Posted January 8, 2010 Hi familyof4- I think as far as treatment goes you need the whole package in this order: long term antibiotics, steroid burst, possible ivig. It would be terrible to make the investment (time, money, stress, etc) in ivig, only then to leave the child vulnerable to reinfection. How long term the abx need to be, seem to be the million dollar question. For many when you go through a rough pandas episode, then the treatment path, when you get your child back you are not willing to take the risk of backing off of the antibiotics. As far as the BBB is (Buster can answer this better) I think it is a somewhat relatively new and not totally understood science. There are somethings that maybe in some people open the blood brain barrier- usually temporarily. Having anasthesia does not cause pandas, although some of us consider the possibility that it temporarily opens the bbb and may cause an episode or uptick in behavoirs for those with pandas. The bbb can open- but you still need the autoantibodies there to create the problem. I would never put of necessary medical or dental procedures because of this. If there are elective procedures, I would put them off untill my child was in a healthy state- if possible.
Fixit Posted January 8, 2010 Report Posted January 8, 2010 I'm not sure if i'm of any help but..... Doctors do not know everything, and evidence and information are always changing.(thank God). It is called the PRACTICE of medicine. And i have to try to remind myself of this. This earth was flat and the center of the universe. Smoking was safe but changed that to second hand smoke was safe. Celicas didn't cause seizures or tics. We all know these are incorrect. Does the bbb close at 2? can something else open it? You cannot fight your genetics and i know that is incorrect as people who's parent died in there 40-50s live to their 80's via diet and exercise and other Check out epigentics and the work going on there. I guess i am just trying to give people hope as that it has been given to me here.
Debbie1 Posted January 8, 2010 Report Posted January 8, 2010 My three kids recently has tonsillectomies. Two of them have PANDAS. We had no problems with the anesthesia - in our case it did not cause an exacerbation. Several years ago, my daughter had an endoscopy. We had no exacerbation of symptoms with anesthesia then either.
MichaelTampa Posted January 8, 2010 Report Posted January 8, 2010 I had anesthesia a few months ago for an endoscopy and then two days later for a colonoscopy. I guess these are relatively short procedures, but, I'll say, the hour just after waking up was just spectacular, the most relaxed I've ever been (that I can remember). Even the next 12 hours or so I was very relaxed, the fluorescent lights really didn't have the same problem for me they normally do. Michael
thereishope Posted January 8, 2010 Report Posted January 8, 2010 I might have been the one who mentioned anesthesia. The only reason I suspected that as a possibilty for opening the BBB is the number of kids that had exacerbations following t and a along with the number of exacerbation people have mentioned after receiving laughing gas at the dentists offcie. I don't know if there is a connection, but that seems to be a similar factor that appeared with some kids and exacerbations. I just try to find what may cause relapses (whether if only in theory) to try to prevent it occurring in my son again.
dut Posted January 8, 2010 Report Posted January 8, 2010 I also believe that failure of BBB integrity is central to PANDAS exacerbations, certainly for our dd but wonder if in the case of t&a and dental procedures the exacerbations are more likely due to release of strep or other pro inflammatory agents (bacteria/viruses) into the bloodstream.....
Fixit Posted January 8, 2010 Report Posted January 8, 2010 I might have been the one who mentioned anesthesia. The only reason I suspected that as a possibilty for opening the BBB is the number of kids that had exacerbations following t and a along with the number of exacerbation people have mentioned after receiving laughing gas at the dentists offcie. I don't know if there is a connection, but that seems to be a similar factor that appeared with some kids and exacerbations. I just try to find what may cause relapses (whether if only in theory) to try to prevent it occurring in my son again. You mean immediatley after??? or long term???? when my ds has had anything like that he is a mad man when coming out...i mean i've had to physically restrain him but it would go away in a few hours...they said that is just a side effect for some kids??
thereishope Posted January 8, 2010 Report Posted January 8, 2010 I agree with that too. That the child is vulnerable to bacteria with both procedures. Like I said, I just try to cover all bases. In the future, if he should ever need dental work or surgery, it will just remind me to take a step back and think things through. It also reminds me to make sure he brushes his teeth so he doesn't need dental work and I don't have to cross that bridge. I also believe that failure of BBB integrity is central to PANDAS exacerbations, certainly for our dd but wonder if in the case of t&a and dental procedures the exacerbations are more likely due to release of strep or other pro inflammatory agents (bacteria/viruses) into the bloodstream.....
thereishope Posted January 8, 2010 Report Posted January 8, 2010 My son was fine immediately following surgery. He actually had an easy recovery. I think I only remember one person saying PANDAS symptoms began to resurface right after the child started to wake up. Who knows, maybe it's combo of the exposure to bacteria and anesthesia. Maybe there's no connection. I really don't know. I might have been the one who mentioned anesthesia. The only reason I suspected that as a possibilty for opening the BBB is the number of kids that had exacerbations following t and a along with the number of exacerbation people have mentioned after receiving laughing gas at the dentists offcie. I don't know if there is a connection, but that seems to be a similar factor that appeared with some kids and exacerbations. I just try to find what may cause relapses (whether if only in theory) to try to prevent it occurring in my son again. You mean immediatley after??? or long term???? when my ds has had anything like that he is a mad man when coming out...i mean i've had to physically restrain him but it would go away in a few hours...they said that is just a side effect for some kids??
earnestfamily7 Posted January 8, 2010 Report Posted January 8, 2010 just a thought here - my son had a problem with exasperations/sypmtoms resurfacing a few hours after surgery... I recently talked to my husband about it and said that perhaps if the strep was intra-cellular (which I believe means that the step is 'hiding' in the cells and then when the cell dies the strep breaks out) so after the T &A there was a HUGE amount of die off... hence the symptoms.... I suggested this to our Infectious Disease dr.... still waiting for a response I have been researching quite a bite lately and so many pieces to a very complicated puzzle. with that said I am a believer that there are times when things can cross the bbb.... try google search on it.... I found a some interesting articles there (be prepared some are difficult reading)
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