Missmom

Thanks for sharing

Is he on prophylactic abx? Did you take him to the dr. when he had the cough and cold? I just wonder if it is some kind of infection that is still active and causing his system to overload. Have you noticed an increase of any other pandas symptoms such as increased anxiety, fidgetyness, lack of attention, unable to concentrate, unable to sleep, urinary issues, etc....? The reason I ask is if my son has a flair i notice immediate increase in many symptoms he has tics so they definitely get worse, but I also notice hyperactivity, increased anxiety and more.

You should stop the current antibiotic you are taking and they will prescribe you a different antibiotic, probably flagyl or vancomycin. These are both very strong and will probably take care of any infection you are trying to fight anyway. Florestor and culturelle are both good for c diff. I don't think they would cure it if you already have c diff, but these probiotics could help you prevent future relapses. I had a mild case of c diff two years ago and the doctors took it very seriously. I take probiotics now to help prevent relapse and also they just help me feel better. I say my case was mild because it was occasional diarreah (some stools looked normal but just a little soft) no fever or nothing major. The only reason they caught it was because I was having a colon scope and they sent in a stool sample as part of routine testing. I definitely feel better after being treated though. Don't ignore this.

At least at this point you have a psychiatrist willing to treat this. I would be less concerned with all of the "tests" that may or may not give you any answers, and more concerned trying different things to see what makes you feel better. It is best to try one thing new at a time. Stay with the Zithromax and see if you notice any improvements. I would not increase the Zoloft until you see if the abx. make a difference.

I am always fascinated by these lightbulb types of moments that I hear about on here. So, .... He just woke up and said he did not want to do be sick anymore? I LOVE to hear these types of things, just so hard to understand. How does this happen? I am so excited for him and for you, and I agree you should buy him whatever he wants. Do you think it was puberty? He is 16, so do you feel like he developed physically later or earlier than most boys his age? Is he still taking any meds? Please elaborate for us if you get time.

Just speculating, maybe the growth along with all of your symptoms has created so much anxiety in you that you were constantly having soft stools. Now that you know that the growth was nothing to be as worried about and it has relieved some anxiety this has allowed your body to regulate somewhat. I just say this as every time I have a stressful medical test or situation I seem to be running to the bathroom. ibs....

Since you have been dealing with this for two years now you will probably need more than the standard 10 day dose of antibiotics before you notice any improvements. Two months of treatment may be needed. Also, you did not say what antibiotic was prescribed but what most of us on this board have found is that amoxicillin is just not strong enough to work. Many have success with Zithromax, and many have success with augmentin (that is amoxicillin with culcuvative). SSRI should be only used in very low doses and only when necessary.

Just FYI, my son has tics although minor at this point. I have him on prophylactic antibiotics. I have avoided steroids at this point because some others have reported steroids can lead to an increase in tics in some kids. You could probably search and find the older posts. I would consider steroids only if things got much worse or if the antibiotics stop working especially if tics are your sons only symptom at this point.

I would be willing to bet that when he had sore throat and fever but tested negative that he actually had strep but that the nurse maybe did not get a good enough swab. This happens quite a lot and leads to false negatives. I think because so many children are squirmy and absolutely hate the throat swab. My son would rather bloodwork any day over the swab. The five days of antibiotics likely was not enough. Also, many docs prescribe amoxicillin and that simply does to work on many children and they return later needing a stronger antibiotic. I would also question the touretts diagnosis. I mean it is what it is as far as just a label, but I feel that whatever they call the tics does not really matter. What matters is why do totally normal kids all of a sudden develop tics and OCD. I can't believe so many doctors just give you a name and then move on. I mean, something had to trigger this. In my mind it is just common sense to try to find and treat the cause. My son also has tics that started overnight. He went from totally normal to waking up and not being able to stop nodding his head. It was so scary. Some days he still has them but for the most part only I would notice on a good day. I have read many posts on here which say that the tics are usually the last thing to go. Anyway, it is great that you are educating yourself just in case he flairs up again. Look for a good doctor who you would be able to call on should things flair up again. Someone with an open mind who will listen to you and be willing to run tests and treat. Try to avoid flu mist from now on. I don't give any flu shots but if you choose to do flu shots the vaccine seems better than the flu mist for pandas kids.

You should be thankful that your son is doing so much better, but also be cautious. Just curious, after the initial onset and flu mist, was your son ever tested for infection and or treated with any antibiotics during that time. Did the neurologist order any of the bloodwork to test for active or past infections? I was kind of in the same boat as you at one time. I knew my son had displayed symptoms of pandas in the past but once I realized it he was doing much better. I asked our doctor to please write me a script of augmentin just to keep on hand. That way if the symptoms spike up then I could start treatment immediately and call and set up an appointment with the doctor. That helps just to have peace of mind. I also avoided things that I knew could trigger a flair. Things such as dental visits (I know they are important, but I figured as long as his brushing habits were good he could skip a cleaning or two.). Also I am very careful about exposing him to people who I know are sick. Just being extra careful. I give plenty of vitamin c and do the simple things like lemon water for detox. I am glad you found this forum, there is so much info on here to help you.

Well, I have to say that early on my son probably had many minor pandas symptoms which waxed and waned with illness and colds, etc... However, having never heard of pandas I just assumed it was just him worrying too much, or just being over anxious. The slight tics he had I thought were nervous habits and I assumed my son was just a little quwarky or he was just being a kid. Anyway, looking back with the knowledge I have now I clearly see that that was the beginning of pandas. It was not until he developed a pretty noticible tic overnight and started with other obsessive behaviors that I realized this was pandas. And yes I remember the day and time of this particular episode so I consider that as our sudden onset, but sure there were signs earlier. I think we all would notice and catch pandas earlier in our other children. Once you have a pandas kiddo and know what to look for the signs can be pretty obvious. I don't think you are being over paranoid at all. This may or may not be pandas in your younger child but you owe it to her to at least try to do your best to investigate this and treat this and prevent it from getting any worse if necessary. Knowing what I know now I would be at the doctors office ummmm... Yesterday! This is just my simple opinion.

What is vayarin?

Yes, he can stop whatever he is doing at that moment but then reaches for something else. Like if he is twirling a shuffeling cards over and over and it gets on my nerves I say to him "please put the cards down". He will put them down but then reach in his pocket for his phone. It is like he has to keep his hands busy when he is in a flair. Mommy2mcl- if there is a pattern to it and she can't stop until she has finished the pattern then yes, I would call it OCD. My son does not get mad when I ask him to stop, he just starts doing something different. It might be throwing a ball up over and over and catching it or dribbling a basketball, I don't know what to call it. I just usually tell him he is being fidgety again. He is not currently in a flair so things have calmed down for now but it is always indicative of a flair.

I know what you mean, I would not really call it a tic, nor would I call it OCD. Just like some people tap their feet, or wiggle their toes when wearing flip flops. It seems to me more like just having to keep hands busy. I have seen people who are trying to quit smoking having to chew gum, or having to have a cup of coffee in their hands just to keep from reaching for that cigarette. Maybe ADHD type of behaviors, or some type of nervous response. I am not really sure what to call it. When my son is in a flair I notice he can't keep kis hands still either. He usually plays games on his phone or shuffles cards or twirls a pencil in his fingers, or picks up whatever is around. All teenagers are constantly on their phones now anyway, so usually it's not too bothersome to us. Once the flair gets better this usually gets better as well.

There are lots of things you can try to do early on, but without knowing your sons symptoms, history, or list of any current medications it is hard to give advice. Has your son been sick recently, had any vaccines recently, is he prone to allergies, what is his history with strep throat infections, does he still have his tonsils? Many pandas/pans children do not present with typical strep throat symptoms. So he may be carrying strep any you would not know unless the bloodwork is done. I can tell immediately if my son has been exposed just by a flair up of tics and anxiety. There is a wealth of knowledge on this forum so please don't feel hesitant to ask.

I think your dd probably had an undiagnosed strep infection during all those early episodes of sickness. We all know here how unreliable those rapid strep tests are and how quick local doctors are to rely on those tests. Even cultures can give false negatives if the nurse does to get a good swab. I also think the frequent urination episode was the start and the tics and chorea movements are a result of your childs system being overloaded. I am no expert, but definitely sounds like pandas or pans to me. Glad you have been keeping a journal and hope you can find a doctor to help.

Please search this forum about the singular. Was this a pandas specialist who suggested singulair? I know it has been at least a year ago but there was a few threads on here that singulair is not a good choice for pandas kids. I believe benedril and Zyrtec are fine but I stopped giving my ds singulair after reading the threads. My son now takes vistaril nightly for allergies and anxiety. I can't remember but it was something about how the brain reacts to the singulair.

This happened to my son when he was very young. He had three weeks of positive rapids and a neg culture. Ped did not culture after first two weeks of rapid positive because that was enough to give different abx. After third pos rapid he cultured negative. Ped gave us some lame excuse about rapid coming up positive even though strep bacteria was "dead". This was my first child and he was only 14 months old at the time. I believe this was the start of pandas for him.

Glad to hear things are going well so far. I have never heard of ivig for rhumatic fever, but it makes sense. If it helps pandas kids why wouldn't it also help rf patients as well. Keep us updated, thanks.

The last two tests measure strep antibodies and are often used as an indicator of recent strep infection. Many doctors use this as an indication for pandas, but you can still have pandas without high numbers. Also wanted to say my son never had frequent urination. Symptoms are different for every child and you don't have to see all of the symptoms to rule this in or out. Very confusing I know but that is why it is so hard to figure all of this out.

We have not done a t&a yet, and probably won't now because my son is now 14 and the older they get the more complications can occur. But when he was younger I kind of wanted it but the ped wanted to take a wait and see approach and did not want to do any surgery unless absolutely necessary. My son has been on augmentin though for two years and when I have tried to take him off the symptoms do return. Maybe not immediately but they creep back in. We have a doctor who is very open to antibiotics and if things got worse ivig or plasmapheresis. I feel fortunate for that. I just wanted to say though although we have not done a t&a, I would not even consider it unless my son could have antibiotics before, during and after surgery. I don't know if you have the option of changing doctors, but maybe you could look for another doctor who is more open to the idea of antibiotics as preventative.

Thanks jferinga, a lot of great observations. Looking forward to reading more. You should start a thread with your observations and maybe others can add to it as well.

Your welcome, I tried the mucinex about a year ago and used it with abx. I think it helped and my son has not had positive strep since(knocking on wood). Your son definitely needs an adult dose at that size, check with your doctor. I don't know if cats can get strep. I think it is more common in dogs but again ask the vet. Best of luck.

Yes, I compare this to a peanut allergy. Kids with severe peanut allergies can react even when they are sitting next to someone eating peanuts just like pandas/pans kids can react when exposed to others with strep infection or strep carriers. Good news is that usually these types of flairs don't last long.

Have you all been tested even pets can be strep carriers? If no strep in the house I find it hard to understand how he keeps catching strep. Is the dose of abx that he is on considered a treatment dose for his weight or is he on prophylactic dose? After his last strep infection did you retest and get a negative test? If so I don't know unless the abx are not strong enough and are kind of bringing out the strep bacteria and allowing the test to indicate a positive result. You could also try a mucus buster such as mucinex for a few days in case the strep is hiding in biofilms. The mucinex may bust open the biofilms exposing the bacteria and allowing the antibiotics to get rid of the bacteria. Just throwing out some ideas.