Missmom

Yes, every time ds gets a virus, even a recent sinus infection, his symptoms completely disappeared. This was especially apparent during the fever. Then after he recovers from virus, the symptoms slowly creep back in. I have also wondered why this happens. I remember inquiring about how long do antibodies last. If the child has a strep infection and the body creates antibodies to fight the strep, once that infection is gone and the body does not have an active infection to fight off, then how long would an antibody live before eventually dying off. I think the consensus was about three weeks. So, if antibodies live about three weeks then you would think that they would only continue to attack the brain for three weeks at a time then the child would go into remission until another infection made the body create more new antibodies. The cycle would then start over for another three weeks. Something is causing these children to keep creating new antibodies. Chronic infection??? I don't know..... If so why do symptoms disappear with virus symptoms. If there was a chronic infection the body would still be fighting it as well as a new virus so why would those smptoms disappear. I am really not expecting any of you to know the answer to this, but just expressing my thought patterns. I have given this a lot of thought just have no idea.

Although it has been a long time since I worked and I am a little rusty, my background is in media marketing. I am particularly good at creating slogans, jingles, logos, etc... If anyone knows of a non-profit that would be in need of these types of services feel free to pm me. Like I said I am very rusty but am willing to offer ideas or suggestions.

Yes my hubby is an engineer, yes the kids dad.

I have also wondered about aspirin. After all most adults now, took aspirin regularly when we were all children.. I wonder why the stipulation on aspirin is based more on age than on weight. Most meds are regulated based on a persons body weight, but with aspirin it is said not to take it unless you are over the age of 18. Just curious if any of you know.

I agree that being a psychopath and having pandas are two separate entities.... What if the boy had diabetes and was a psychopath would the news media be all over that. It makes me sick to think of the stigma that this story will put on our children.. I hope to God that my child does not hear or read about this. Thankfully it is summer and now that school is out where we live he will be keeping too busy to watch the news. If anything I pray that this story will make doctors take a closer look at all of this and more money will be spent on research and therapies for the children and adults who are still suffering. Sorry dcmom I did not read your post before posting the same example as you.

My son also had body odor when he was in kindergarten. I remember buying him deodorant and thinking it was strange to have to do that at such a young age. It smelled more like adult body odor if I remember correctly. Pandas was not even on our radar at he time so I never put much thought into it. Just wanted to chime in though.

If you caught this relatively early, which it sounds like you have and have already seen some improvement, then I would expect you will need at least 60 days of full dose antibiotics. Also, make sure the dose is high enough. Sometimes family doctors only like to give moderate doses as treatment dose and it won't be enough to choke out the infection entirely. This will only hold it at bay while taking the abx. I think that may be why some parents see a regression immediately after stopping the antibiotics. If you would like to give your sons weight and which abx he is taking maybe some of us can comment about reccomended doses. Before my sons pandas diagnosis I would see some of his tics and behaviors, but we had a family doctor who always treated very aggressively any infection with antibiotics. This always kept things at bay and he would go immediately into remission. I never suspected any sort of pandas or anything because between infections all symptoms were gone. Anyway, when that good doctor moved away, we used another more conservative doctor who did not prescribe the higher dose antibiotics and that is when all heck broke loose. My sons infections were not cured after that. Now we are on the right track and have a wonderful pediatric neurologist who is treating my son. Also, just wanted to comment about c diff. I had c diff back in December. I still take probiotics daily and when taking abx. I double it. I take culturelle, and florestor. Both have excellent reputations for helping with c diff. Also I think Zithromax is one antibiotic that is less likely to cause c diff. It is still possible but somewhat easier on the digestive tract. Don't know if your son is allergic to zith but if not I would feel more comfortable with giving that. Clindamycin is supposeably the worst antibiotic for contributing to c diff. I rceently had a throat infection and took Zithromax and seem to have gotten through it just fine.

I think the reason this test is not mentioned very often is that it is very vague.... And I'm not really sure how accurate it is. Our neurologist ordered it but does not give the test much credit because it does not tell you much more than a throat culture. I may be wrong about this, but just remember specifically inquiring about my sons results.

Cobbie, Just curious how did he treat the nasal strep. Did you have to use some sort of nasal spray, or did regular abx get it all. I have always suspected strep in my sons nasal passage, but never had that specifically tested. He also tested positive on streptozyme but not too bad on ASO and anti DNase. Thanks.

Wow, please follow up with us and let us know how the phone call goes. Maybe he is trying to coordinate another study of his own. That would be interesting to know. I would definitely return his call.

Hi ob dad and welcome to the forum, It sounds like you are on the right track and I am really glad you got the diagnosis from one of the pandas experts. I personally can't answer your questions about dr. Latimer because we have never seen her, but I just wanted to suggest you copy your post and display it in the pandas section of the forum as well, or post your specific questions there. This new member introduction section of the board is relatively new and a lot of times when I am just searching for info, I go straight to the pandas/Lyme section. So any specific questions you have would probably be viewed more under that section and you will get answers quickly. Just a suggestion. There is a lot of info here on just about every topic. Hope you find the answers you are looking for.

Are you simply afraid of the needle itself or of the pain of the actual blood draw. You really should get those labs run so it will give you a bigger picture of what you are dealing with. If it is the pain of the needle going in that scares you, you could try that EMLA cream which numbs it and you wont feel a thing. Just a suggestion. I use to avoid blood draws at all costs, that was until I got pregnant with my children and then I had no choice. I still have to close my eyes and turn my head.

You can try ibeuprofin at full dose for her age and weight for a week or so to see if you notice any improvements in behaviors. This should reduce inflammation in her brain and is just another small clue if you are on the right track. Ideally you would also try a month or two of antibiotics such as augmentin or Zithromax along with the ibeuprofin. If you have a good relationship with a physician I would explain the situation and see if they are willing to explore this with you. Until I found the right doctor willing to work with my son it was very worrisome and frusterating. There is nothing wrong with changing doctors until you find one that you feel will work with you. Good luck.

I have thought a lot about stopping abx and have sorta come to this conclusion. And I am sure a lot of you will disagree with me but I think sometimes when your kids aren't sick or in a major flair the only way to know if the abx are really working is to stop or reduce them slowly. I want to know if my son is really better or if the abx are only keeping things at bay. I have tried this several times and a few times the symptoms returned immediately and I started abx right away. And a couple times he did fine without them until another illness came. Either way it is the same result for us. He ends up back on abx. For us ivig is a last resort, but I am pretty sure most who do ivig still end up on long term abx. Just find a good one that your child tolerates well. It is a lot of trial and error and each child is so different. Hope you have a good doctor who is willing to try and try again. It is hard to watch your child go through this but things can and will get better.

Hi there, I just wanted to let you know that although my son has been on abx for over a year now, he has not had an issue with c diff....yet! I hope he doesn't. I however was not so lucky. I went in for a colon scope last December and was found to have it. I had to take flagyl to get rid of it and that was really awful... Anyway, i did lots and lots of research on which abx are most likely to cause c diff. What I have learned is that clindamycin is the most likely abx to contribute to c diff, with keflex as the second most likely. Of all of the antibiotics that treat strep, Zithromax is the least likely to contribute to c diff. It is much easier on your digestive tract for some reason. I recently had a bad throat infection, and I took Zithromax and have not had any problems yet. I am not saying that your son will relapse with two weeks of keflex, but if you find that he needs longer term abx, then you might want to check into Zithromax. Also I am sure you are aware of this but probiotics are crucial. I will never again take antibiotics without them.

Welcome to this forum, you will find so much useful information here, and unending support. My son initially cleared with standard ten day abx. treatments, although the doctor we had at the time usually increased doseages a little. The problem is that strep is everywhere..... There is no way to keep your child from getting it again and again, and it seems that with each subsequent infection the pandas symptoms get worse and harder to clear. That is the reason some of us keep our children on prophylactic doses to minimize the chances of re-infection. So yes your son may initially clear with a regular dose of antibiotics, but you risk the chances that if/when he becomes infected again it may not be as easy. For me, ivig would be a last resort, but many here have had success with it. Depending on how you feel about it that may be an option. I am so sorry you are having to deal with this, but know you are not alone.

We use vistaril at night to ease anxiety and it seems to help with nightmares as well.

I agree with t. Anna, if your son is not allergic to pennecillin, then I would try augmentin. When my son was just a baby about 14 months old he was feverish and fussy so I took him in and he tested positive for strep. Our pediatrician put him on 10 days of amox. After ten days all his symptoms returned so I took him back. Positive strep again, tried azyth. for five days. Once again took him in tested positive again, so doctor gave him a shot of pennecillin and started him on augmentin. The doc finally sent off a culture and said that the strep cells were dead on the culture but registered positive on the rapid. (still not sure I believe that). Anyway, I believe after that month of resistant strep, that the pandas was triggered. I have no evidence, just speculation that it was never actually cleared. After that episode we moved and switched doctors. Our new doctor actually admitted how much he liked antibiotics and was a big believer in just starting out with higher doses and clearing infections right away. When he was treating my son, he never had any pandas issues. That doctor later moved and after that whenever my son contacted strep he was only treated with the lower more conservative doses of antibiotics. That is when the pandas symptoms started to rear their ugly head. There is a lot to be said for catching things early and treating aggressively. I wonder if we had continued to be treated by our "good" doctor if we would have ever had to even deal with pandas. Anyway, I suggest asking for a culture after each round of antibiotics just to make sure the strep is actually cleared. Good luck. I hope you find the correct antibiotic and the correct dose. Sorry you have to go through this.

What other labs did your pandas specialist run? Did you have any other results show up positive? Strep titers? CBC? Any indications of recent infections? We have never tried steroids but I have also heard that they can increase ticcing. Do you have a doctor willing to prescribe long term abx. It took about two months on abx before things remained stable for my son. I was actually able to stop abx for a couple of months until another infection hit. But with each flair I feel my son needs more than the standard 10 day abx. Treatment. You will figure it out, don't worry, you just need a good doctor on board who is willing to try figure this all out with you.

I don't know, maybe it is due to the awareness of pandas, that more parents are not just satisfied with a touretts diagnosis or a bipolar diagnosis, ADHD, etc..... Also we now have so much info available online to help us research what is going on with our children and are able to find pandas friendly doctors. Also, I have always wondered if there are some strains of strep out there that are more viralant and make children more susceptible to all of this. I think only time will tell.

We tried something similar when my son was first diagnosed, and the augmentin worked great. We then switched to keflex once daily as preventative and his symptoms all started to return. Amoxicillin alone does not work well for a lot of pandas kids, like you said your child got strep while on amox. Mine did too. So, don't be surprised if the augmentin works great and then there is a relapse. My son needs long term augmentin to help him. You are really on the ball, hopefully you can nip this in the bud early....

I don't know if this would help you, but there is a numbing cream that you can put on the arm about 30 mins prior to blood draw and they won't feel a thing. Won't know when the needle goes in or comes out. I have drawn a blank on the name of the cream right now because we don't have to use it. My son is completely fine with needles ( fortunately) but my neighbor is an ob/gyn nurse practitioner. She uses this cream when they do circumcisions. She also has written a prescription for several girls in our neighborhood when they got their ears pierced. They said they never felt it. It must be pretty good stuff. I plan to ask her for it before my daughter gets her ears pierced. So anyway, sorry I don't remember the name of it, but maybe you could ask your doctor ahead of time to write you a prescription and put it on 30 mins prior to lab work. Maybe others will chime in if they have used it.

My son just turned 13 and is 110 lbs. I give him 25mg usually at night as getting to sleep for him creates a lot of anxiety. He worries about everything. He thinks about his day and what he has to do the next day, then he worries he won't get a good sleep. The more worked up he gets about it the longer he is awake. On those nights I just give him one and usually within 30 mins he is calm enough to sleep. I don't know about giving it during the day if it would cause sleepiness. It does help him though. He could take two at 50 mg if needed due to his weight, but one usually does the trick.

I would say it WILL help you feel better... Maybe if he believes you, he will have it in his mind that it will be a positive experience and will calm him down. The only drawback may be sleep. My son always has trouble with sleep even at home, so on vacation it can escalate the problem. I have to take a sleep aid along. I understand your situation, not an easy answer.

What will he say if you ask him? I don't know what part of the country you are in but I think going to spend some time in Florida would put anybody in a better mood. However you decide to handle it I hope he goes so your whole family gets to enjoy the trip.