Doctor's Appointment

[faith]

thanks michele,

he has never been on longterm antibiotic. We never did that route because we are dead ended because of low titers, so he does not seem to fit that criteria. Now I have an opportunity to try this augmentin, but crazy me is a little scared because, say he does respond to it, then when we finish the course, I am picturing him getting worse (ala others saying "it came back with a vengence" when off the antibiotic). I think I'm afraid of triggering the antibodies to work overtime, isn't that what an antibiotic does in order to fight the infection? That's probably why they say its not good to stop giving antibiotics in general when person is feeling better, because the antibodies are actually being produced in abundance in order to kill the bacteria that is the offender. However, I believe with this PANDAS, it is not the strep bacteria that is the problem, but the ANTIBODIES that are attacking whatever (brain?) ugh, I don't know. ...

But his eye twitch is like a complex one right now, so I'm gonna see one more day and decide if I want to use the antibiotic. Any thoughts from anyone else if it would be a bad thing.

 

Faith

[kim]

Faith,

 

Personally, I would not give the antibiotic if your sons culture comes back negative and you have no evidence of high titers.

 

I

think I'm afraid of triggering the antibodies to work overtime, isn't that what an antibiotic does in order to fight the infection?

If strep bacteria were present, the augmenten would be killing the strep, so the antibodies that your sons own body would be producing, would actually "settle down." That is presumably why PANDAS children improve on an antibiotic. The Augmenten will not stimulate antibody production.

 

That's probably why they say its not good to stop giving antibiotics in general when person is feeling better, because the antibodies are actually being produced in abundance in order to kill the bacteria that is the offender.

 

The reason they say not to stop an antibiotic until you have completed the full course, is because the strep/bacteria is fighting to survive. If you stop the antibiotic in mid course the infection may relaspe stronger than it was when you started. It may also be a bit more resistant, to the antibiotic if restarted. I'm sure not trying to sound like a know-it-all here Faith, I'm sure one of the nurses on our site could explain it better, but I thought I would try in case no one else responded quickly enough to help, with opinions.

 

You also have to keep in mind, the effect of the antibiotic on the good bacteria in the body. The augmenten will kill good bacteria too. This is where the probiotics come in. You have to help repopulate the gut with good bacteria, sometimes, because the antibiotic has killed off beneficial bacteria too.

 

I was looking for a pub med study the other nite (got off on another track....as I do so often) but I couldn't find it. It's posted here somewhere. It reported an increase in tics for children with colds. They said that the association wasn't reported by adults with colds. I thought that was interesting when I read it, quite a while ago.

[michele]

Kim,

What do you think will be the long term effect of having them on daily antibiotics? Andrew's titers are borderline. At one point when this initially came on his were high for his age. Do you think it is too risky to give antibiotics daily? What if they get really sick will there be an antibiotic strong enough that will work? I know I get this question over and over from people. Also, I know you refer to alot of research studies for your responses. Thanks for sharing the information you find. You should go into library information science. You would be very good at the research as reference librarian.

Michele

 

Faith,

 

Personally, I would not give the antibiotic if your sons culture comes back negative and you have no evidence of high titers.

 

I

think I'm afraid of triggering the antibodies to work overtime, isn't that what an antibiotic does in order to fight the infection?

If strep bacteria were present, the augmenten would be killing the strep, so the antibodies that your sons own body would be producing, would actually "settle down." That is presumably why PANDAS children improve on an antibiotic. The Augmenten will not stimulate antibody production.

 

That's probably why they say its not good to stop giving antibiotics in general when person is feeling better, because the antibodies are actually being produced in abundance in order to kill the bacteria that is the offender.

The reason they say not to stop an antibiotic until you have completed the full course, is because the strep/bacteria is fighting to survive. If you stop the antibiotic in mid course the infection may relaspe stronger than it was when you started. It may also be a bit more resistant, to the antibiotic if restarted. I'm sure not trying to sound like a know-it-all here Faith, I'm sure one of the nurses on our site could explain it better, but I thought I would try in case no one else responded quickly enough to help, with opinions.

 

You also have to keep in mind, the effect of the antibiotic on the good bacteria in the body. The augmenten will kill good bacteria too. This is where the probiotics come in. You have to help repopulate the gut with good bacteria, sometimes, because the antibiotic has killed off beneficial bacteria too.

 

I was looking for a pub med study the other nite (got off on another track....as I do so often) but I couldn't find it. It's posted here somewhere. It reported an increase in tics for children with colds. They said that the association wasn't reported by adults with colds. I thought that was interesting when I read it, quite a while ago.

[emma1]

Michele, My doctor is generally very conservative regarding antibiotics, but has expressed a willingness to prescribe long term. Now, what I am not clear on is, if my daughter is still having symptoms (tics) but the titres become normal -- will he still allow the antibiotics? That I don't know. But right now, the titres are high. Our doctor did say that he would use amoxicillin or Pen V, but didn't want to use augmenten or zithromax, because we needed to hold something in reserve for other possible infections. Is there a chance that when the titres come down, the tics will subside as well? Has that happened for anyone? How long have your son's titres been borderline normal, Michele?

 

Kim, would antibiotics be OK so long as titres are still high? Or would you stop after a "round" of antibiotics?

[faith]

ooh, sorry if I have opened up a can of worms here...didn't mean to add any concerns for those of you using the antibiotics for your kids,,,,

 

but thanks for all that, Kim, I do appreciate any and all opinions, answers, any little ditty... every little bit helps.

 

thanks for the tidbit about the colds, I sure hope that is what it is and will sail away with the cold (hard for me to gauge if thats it because he doesn't get colds often). he is still stuffed, but is up and walking around fit as a fiddle. But the tic he is doing is an exaggerated wink, like with the mouth opening too, its got me worried about sending him to school, and its gotta come on the heels of the school beginning to put together a recommendation for him......

 

Michele, I forget if your son gets the strep, in spite of borderline titers, and did the doctor think antibiotics (whatever kind) would help when he gets any kind of illness or just for strep?

 

Faith

[michele]

I am yet to have all the blood work explained. I am trying to get insurance to cover the DAN Dr. based on nutritional and metabolic problems. The Carbon Dioxide total was low, the HDL cholestol was borderline high, the iron saturation was low, the anti-mylin titers were negative. His pyrolaria test was positive. Like I said I am not sure what all this means. I am not sure if ASO titers wee cheked. Strep was negative. He rarely gets the strep anymore. He did have Anti MAG antibodies suggesting active demylination in a peripheral neuropath suggesting Igm paraproteinemia.. I have no idea what that means! I will have a phone conference next week to discuss where we go from here. Dr. Murphy said just being in the room with strep will cause him to have PANDAS symptoms. The antibiotic will keep him strep free but not symptom free. The stronger antibiotic should help with clearing up the symptoms. It does seem to be helping. I am not saying he is symptom free but the OCD is way down and the behaviors are much better. If anyone can explain this I would be forever greatful.

Michele

 

 

ooh, sorry if I have opened up a can of worms here...didn't mean to add any concerns for those of you using the antibiotics for your kids,,,,

 

but thanks for all that, Kim, I do appreciate any and all opinions, answers, any little ditty... every little bit helps.

 

thanks for the tidbit about the colds, I sure hope that is what it is and will sail away with the cold (hard for me to gauge if thats it because he doesn't get colds often). he is still stuffed, but is up and walking around fit as a fiddle. But the tic he is doing is an exaggerated wink, like with the mouth opening too, its got me worried about sending him to school, and its gotta come on the heels of the school beginning to put together a recommendation for him......

 

Michele, I forget if your son gets the strep, in spite of borderline titers, and did the doctor think antibiotics (whatever kind) would help when he gets any kind of illness or just for strep?

 

Faith

[kim]

Ok guys...just remember I have NO MEDICAL BACKGROUND, but these are just a few thoughts in regards to some questions being asked.

 

If I had a child with elevated titers, and clear cut evidence of abrupt symptoms, I would not hesitate to use what ever antibiotic that appeared to relieve symptoms. The injury/inflammation that may be occuring in the basal ganglia, would be my main concern, hands down. I would also consider low dose daily antibiotics to "keep the strep away," if possible. In fact my youngest son, was put on 1 tsp of amox. for a period of time. This was before I knew anything about PANDAS/tics etc.

 

I think something that caused me to look a little deeper into this thou, is the fact that my youngest son, who was also said to be a carrier and had numerous active infections , also had pneumoniae twice. He completed numerous rounds of amox, only to retest positive and be given another round of a different antibiotic. He also had low zinc, and with his limited diet, probably had other vitamin and mineral deficiencies.

 

From a Dr.s standpoint, I think it's important to know a little about S pneumoniae. This is a bacteria that is found in many people. It doesn't necessairly cause disease, but can be transmitted to others, where it may. At any time, we can all carry bacteria, that doesn't hurt us, but when certain conditions all come together (stress, poor diet, other illness, disrupted flora,any number of things) it can invade and cause illness.

 

There have been some studies that relate to antibiotic use and carriage and invasion of S pneumonia. Here is an article that may help explain. I know it's technical, but I think there are some interesting things that almost anyone can pick out.

 

 

http://textbookofbacteriology.net/S.pneumoniae.html

 

 

S. pneumoniae has a natural transformation system as a mechanism for genetic exchange. This process is of medical significance because it clearly underlies the explosion of antibiotic resistance in the bacterium over the past 20 years. For example, penicillin resistance is due to altered penicillin-binding proteins (PBPs) which exhibit a low affinity for beta lactam antibiotics. Comparison of the nucleotide sequences encoding the PBPs in S. pneumoniae and S. mitis demonstrates that horizontal gene transfer has occurred between these two bacteria. In the laborotory, S. pneumoniae can also be transformed with genes from related and unrelated bacteria. As well, in the upper respiratory tract of the host, horizontal exchanges of genetic information could take place between strains of pneumococci that co-habitate or compete for dominance as normal flora.

 

Streptococcus pneumoniae is a normal inhabitant of the human upper respiratory tract. The bacterium can cause pneumonia, usually of the lobar type, paranasal sinusitis and otitis media, or meningitis which is usually secondary to one of the former infections. Streptococcus pneumoniae is currently the leading cause of invasive bacterial disease in children and the elderly.

 

This abstract (I had the full article, but it was lost when my computer had to be replaced) talks about which antibiotics cause the most problems with resistance of S pneumoniae. Zithromax was one of the worst. I think this is part of the reason that Dr.s are hesitant to prescribe antibiotics other than amox, pen V, etc, which may be a good thing to start with. I think they are always in a position of trying to stay ahead of disease with new antibiotics. BUT over prescribing, and stopping in the middle of a course, can create major problems too.

 

http://www.pidj.com/pt/re/pidj/abstract.00...#33;8091!-1

 

If I remember right, the article that was lost, explained that the antibiotics like zithromax were killing off other bacteria in the nasal passage, that normally keep s

pneumoniae in check. When this bacteria died off, due to the antibiotic use, the S. pneumoniae, would overpopulate and fill the void.

 

This is one reason that I would avoid antibiotics, unless I was certain that the potential benefit, was worth it.

[Dedee]

In regards to the antibiotic issue, I think it is just like any other treatment. You need to look at the risk's and benefit's, and see which is higher. That is simply the way we do it in the health care industry. When a PANDAS child continues to have high antibodies and this results in symptoms that interfere with the childs everyday activities you need to look for treatment for that child. It is believed that the elevated strep antibodies cause swelling in the portion of the brain that causes these behaviors / tics, etc.. The theory is that if allowed to go untreated for extended lengths of time it is possible to have damage to that portion of the brain. Now if you give a child antibiotics and there is no improvement in his or her symptoms then it stands to reasons that the benefits of long term antibiotics do not out weigh the risks. However, if you have a child who is basically not able to function in school, not social, and who is miserable with tics; then you begin antibiotics and most of those symptoms subside, then that really seems like a case for continuous antibiotic therapy to me. It is important in this type of illness not to speak in generalities. What works for one child, may or may not work for another. For us, antibiotics have been a life saver. However, I have read of other parents who have started antiobiotics with their PANDAS children only to see the symptoms get worse. We must be careful not to lock ourselves in the same boxes that some physicians have and say that there is only one treatment for this illness. Each child is an individual body with different and complex issues and no clear cut answers. That's why this forum is so wonderful, because everyone comes here with different things that have worked for their child and we are all able to learn from each other. Just wanted to put in my two cents worth. For whatever it's worth. Ya'll have a good day!

 

Dedee

[heveritt1]

This is my first reply and I an not sure if I am doing it correctly. My son keeps having episodes of an eye tic/ADHD since November last year. He is 5 now. It seemed to start when our baby got impetigo, then my 4 yr old got it followed by the tic. They tested him for high antiboties and it was positive, so the doctor said it was possibly PANDAS and treated him with Kephlex (I never see anyone mention this antibotic on this forum), it always went away after a couple of days. When we quit with the antibotic again, the tic returned so he was on Amox for months. We eventually got his tonsils taken out hoping this would solve our proplem, but the tic came back very abruptly a week ago. Ironically, at the same time the baby also had another episode of impetigo.

 

Long story short, his behavior became unmanagable at school last week and he talked alot about headaches. We put him back on Kephlex and it has not worked this time. I tried to get the antibotic changes, but the doctor wanted to do another ASO test and have the family cultured. Today the ASO test (the test for elevated antiboties) was negitive for Strep and now we are lost again.

 

How did you get your doctor to test all of the allergies? was it a skin test or a IGG blood test? He has had the IGE blood test and we found that eggs bother him, but I think it is something else. Did you have to see an immunoligist? Did you go to a Neurologist? We have been sent to a Neurologist and that is about it. I feel we are missing something. I am glad to find this forum, it has been a great help in figuring some of this out. I mignt invest in the vitimans everyone is suggesting.

 

 

 

I have to chime in here - while PANDAS is a illness caused by strep... it is first and foremost an auto-immune illness. The immune system becomes primed to overreact to strep and usually to ANY OTHER thing bugging it, which can include FOOD and ENVIRONMENTAL stuff. It took me a while to get this - and it was a good 6 months before we did the food testing as I could not believe the foods my son had ALWAYS been eating with no problem could be contributing to his illness. I was shocked to find he was sensitive to MANY things he ate daily and "for fun" decided to remove them - totally not believing it would make a difference for him - well it DID!!! My understanding of all of this is that the immune system is like a bucket - it can manage many things in small doses without overflowing - add in an infection then the bucket gets fuller and those foods it could manage before are now causing it to overflow. Doris Rapp talks about this in her book. Many here have talked about the improvements they have seen when removing certain foods - the big one being milk - Claire did a survey a few years ago here. Many doctors do not believe this stuff - but my feeling was I would try anything that could make him better - many doctors also feel we should just be treating our kids the way they treat the usual OCD and Tourettes - but our kids do not have this same illness, that would only be treating the symptom - not the root cause - which is the strep and in turn the immune system. Early on in my journey a special person on this site told me the key is the immune system - I read it and put it in the back of my head - but still just hoped the key was the right antibiotic and it would all go away. In the end she was right - the immune system is complicated but it is what needs to be focused on - through antibiotics - to keep further infections at bay - or to modulate as azith does - as well as keeping their bodies strong by giving good food, vitamins and probiotics and removing anything that could be causing the immune system to react.

[airbucket]

In reading your post, i have a few questions - you talk about treating our kids "the way they treat the usual OCD and Tourettes - but our kids do not have this same illness, that would only be treating the symptom" - does that mean that a child can have TS or another disorder either because his body has a malfunctioning immune system and reacts negatively to environmental forces, OR because it is just a neurochemical problem? What is the difference between the illnesses? I am wondering because i am debating right now what is wrong with my son, if it is even TS, WHAT TS even is, and so on. What you said in your post is intriguing - if the biomedical/alternative approach does not work for some children, what conclusion does this draw? Thanks for any ideas.

 

I have to chime in here - while PANDAS is a illness caused by strep... it is first and foremost an auto-immune illness. The immune system becomes primed to overreact to strep and usually to ANY OTHER thing bugging it, which can include FOOD and ENVIRONMENTAL stuff. It took me a while to get this - and it was a good 6 months before we did the food testing as I could not believe the foods my son had ALWAYS been eating with no problem could be contributing to his illness. I was shocked to find he was sensitive to MANY things he ate daily and "for fun" decided to remove them - totally not believing it would make a difference for him - well it DID!!! My understanding of all of this is that the immune system is like a bucket - it can manage many things in small doses without overflowing - add in an infection then the bucket gets fuller and those foods it could manage before are now causing it to overflow. Doris Rapp talks about this in her book. Many here have talked about the improvements they have seen when removing certain foods - the big one being milk - Claire did a survey a few years ago here. Many doctors do not believe this stuff - but my feeling was I would try anything that could make him better - many doctors also feel we should just be treating our kids the way they treat the usual OCD and Tourettes - but our kids do not have this same illness, that would only be treating the symptom - not the root cause - which is the strep and in turn the immune system. Early on in my journey a special person on this site told me the key is the immune system - I read it and put it in the back of my head - but still just hoped the key was the right antibiotic and it would all go away. In the end she was right - the immune system is complicated but it is what needs to be focused on - through antibiotics - to keep further infections at bay - or to modulate as azith does - as well as keeping their bodies strong by giving good food, vitamins and probiotics and removing anything that could be causing the immune system to react.

[kim]

I love this conversation. I've had it with myself many times.

 

Wouldn't surprise me, if many cases of unusual movements were reclassified as metabolic syndrome, or immune system dysregulation, in the future.

 

This was the subject of one of my all night investigations once. Basically, what I came up with, was TS is most useful as a "clinical diagnosis." It allows researchers to classify cases according to symptoms (both motor and vocal tics although not necessarily occuring at the same time, for a period of 1 year). It describes symptoms, it says nothing about cause.

 

Heveritt, something just occured to me, you said your son showed symptoms both times the baby had impetigo. Impetigo can be caused by strep or staph.

I wonder if staph is causing the relapse of symptoms. Strep titers would not be high, if staph was the culprit, I wouldn't think. Anyone else have any thoughts on that?

[Dedee]

Kim, you are absolutely right in regards to TS. When I suggested to my husband that our son might have TS after his tics began so violenty, he was so mad at me for even bringing that up. He hated the thought of our child being labeled that way, and kept reminding me that his was caused by strep. Since I am a nurse, I tried to explain to him that a syndrome is nothing more than a collection of symptoms, regardless of the cause. Well imagine his relief when the neurologist told us he did not meet the criteria for TS. I said who cares what it's called, he has tics and we have to deal with it. But you bring up such a good point in that so many kids that have tics, do so for so many different reasons and will respond to many different interventions, yet can still be lumped into the same category. Very good observation. Keep up the good work.

 

Dedee

[emma1]

I have some questions as it relates to PANDAS and antibiotics. My daughter had high strep titres, and was put on amoxicillin for 20 days (875 mg twice daily). Symptoms greatly diminished, but did not entirely go away -- still, a MAJOR improvement. I assumed that when she went off the antibiotic, her tics/ocd would return. We are on day 6, and I would still classify the tics/ocd as minor. I am surprised she is doing so well.

 

My question is: If she would continue to do relatively well off antibiotics (from a tic/ocd standpoint), is it safe to keep her off antibiotics (or is the risk that she might be reinfected reason enough to go with daily antibiotics).

 

She was originally on a 10 day course of antibiotics, but on Day 8 her best friend turned up with strep. When I informed my doctor, he said she should finish her current course, and then take another full course to be safe. I called because her tics/ocd increased at the same time her friend was diagnosed -- and then decreased again once her friend had been treated for 24 hours -- this, even though, the doctor said my daughter was exposed, but could not catch, the strep.

 

My second questions is: Does the fact that her tics/ocd did not completely go away while on antibiotics mean anything? If one is on the "right" antibiotic, do all symptoms go away"

 

Also, for those of you with high strep titres, how often and long do you monitor them. My doctor has suggested every 4-6 weeks, until they become normal.

 

Thanks to all of you who have responded to all of my questions. I so appreciate every single response, and am particularly grateful to those who have passed on information from their doctors, especially Dr. Murphy.

[ad_ccl]

My son has been 100% tic free at times, but they still come and go with viral illness etc. His titers remain elevated - the lowest they have been is 450 ( I think) they slowly went down from about 1500. We are checking them again next week - we usually check every 6 months now. He hates the needle, and he has enough to deal with. I think after an infection they can stay elevated for 3-4 months ( I think the info is on the NIMH site). As my doctor has said it is best to look at the symptoms and try to ignore the numbers, but I still would love to see normal numbers one day. I have read that some kids just always have elevated titers (non PANDAS kids). In terms of symptoms and PANDAS I have read that even after the round of antibiotics it can take 3-4 months for all symptoms to go away. Personally, if it is truly PANDAS, I would go on prophylactic antibiotics in hopes of helping prevent a further infection - just my opinion. We really had no choice, every time we went off antibiotics, within 2 days we saw the increase in tics and they would just get worse until we went back on them again - there was a clear correlation. Even after 2 years when we did a trial off antibiotics a year ago it was a total disaster. We plan on remaining on antibiotics for a very long time, the ID clinic talks about 18 - the same practice as was with rheumatic fever. All of our kids are different and it is great your child is doing well even after 6 days off. Very good sign.

[Dedee]

Emma,

 

What Dr. Murphy told us regarding our son and antibiotics was that we should leave him on them long term since he had shown us in several instances recently that when he was off that his symptoms came back full force. Now, she knows that PANDAS children show an increase in symptoms during adolescence and puberty and then the illness begins to subside in the late teens, early twenties. So her suggestion was that every year or two you could just do a trial of stopping the antibiotics and see how he does. If symptoms come back to the point that they interfere with his life style, then start him back. However, if symptoms are mild and do not seem to be bothersome, then the child does not need to be on the antibiotics. If my child did not have symptoms off of antibiotics, I would not give them. That is a clear case of the risks do not out weigh the benefit of long term antibiotic therapy. Yes I do understand what you are saying about prevention. What we did in regards to prevention was a tonsilectomy. I know that is extreme, but so is antibiotics for years on end. Problem was after the tonsilectomy he still had tics after we stopped the antibiotics. Just my two cents worth, but I would watch closely while off of antibiotics and if you start seeing any re-occurance of symptoms, or your child start to become re-infected frequently, then that may give you the answer you are looking for. I think it may be unrealistic to expect them to be completely symptom free. I feel that my son is really doing great, but even on his best days I can still notice a few head tics. The thing is, no one else would ever know what they were and it doesn't bother him a bit. So if he is happy, then Mom is happy. BTW, in regards to titers, I am not really sure what ours are now, but they have been extremely high as much as 8 months after his last strep infection. So I would go more by symptoms than by titers. I have read other posts here that said their children have had high titers for years. Good luck with your decisions. Sounds like your getting good results. That's encouraging.

 

Dedee