Missmom

Agree with LLM, but also wanted to add that spring allergies can also play a major role. I don't know how your weather has been or if there is anything starting to bloom in your area, but just something else to think about. At least you saw some relief, and know that his tics can subside, it just sucks that they returned- I know.

We use vistaril when anxiety gets to be too much... It seems to be a great medicine for my ds and I feel comfortable using it. Just seems to take the edge off. It is a simple antihistamine and non addictive and can be used as needed. Our neurologist actually reccomended it. Also it has been around for a very long time and is generic and cheap. Only problem is you need a Prescription to get it. My son is 12 and takes a 25 milligram pill not often but as needed.

As long as either you or your dh can go along for the trip I say you should let him go. I know it is hard but sometimes you just want them to feel normal, and what a sense of accomplishment he will have after having competed in this. Your dh will make sure he eats and sleeps and takes his meds. I know that sense of fear, believe me, I panic over the slightest thing but at least I know we now have a doctor on board who is willing to help if things go bad. So glad he is on his way to recovery.

If it were me I would start the azyth every three days for protection just until summer. Not sure if your son is in school or homeschooled, but due to that exposure along with all the springtime allergies, I think you should wait till summer to try stopping all meds all together. Just so you don't have any of the allergy stuff contributing to symptoms. Also, we live in the south and spring is the worst for strep around here. My son has always gotten strep every spring. Anyway, just my two cents.

Just ask your neuro to prescribe extra of whatever seems to work best for your child for that very reason. Although I have been trying to wean my son for months now, he usually gets another infection within a month or two of stopping the abx and I have some on hand to just re-start as soon as I notice a flair starting. I would panic if I was not able to start the antibiotics right away. Just explain that you would like extra for those times it won't be so easy to get an appointment right away. If your neuro is slightly familiar with pandas then this should not be a problem. Refills are wonderful. Good luck.

What are your daughters symptoms? Do you feel like your daughter is dealing with more than what you went through as a child or a lot the same. I do think that some children do out grow this as puberty sets in, but I also think all infections/ immune deficiencies must be taken care of first before any healing can begin. I fear that things can get really out of control if any/all infections are left and for this antibiotics are often necessary. I feel ivig and supplements are great as long as all infections have cleared. Biofilms and such can often hide things and make them almost impossible to detect. I know it is so frusterating..... Welcome to the forum and hope you find as much support here as I did. When I first learned of pandas, I had lots of questions but everybody here was so helpful and never made me feel stupid for asking a lot of questions.

Find a new doctor!!!!

I see them as a tool to help my ds focus and concentrate. The only difficult part for me is to deny the violent / mature rated games. Most of the boys at school have these games and this is what they all get on the x-box live and Internet and play. My son already feels insecure with all that he has going on that he just wants to be like all the other boys. If I deny him these violent games then he just feels even more different. But as far as just regular games or monitored Internet usage, I encourage it except for dinner time or other family activities.

This is the strangest thing we have all experienced. Our main symptoms have been high fever that just keeps returning once Motrin wears off and cough. We have been more sleepy than normal, but it's not like we are sleeping all day. The incubation period is 4-7 weeks so it seems odd we all came down with this within 24 hours of each other. Also, my pandas son is such a germaphobe that we never share anything. I just can't imagine how we would have spread this around the family because it can only spread through bodily fluids. All I know is that my daughter did have a positive mono test so here we go again.

Was this your pandas daughter that had mono? Did her pandas flair from this until you started her on the l-lysine? I have not noticed a rash with the abx, but will keep my eyes open for that now. Thanks.

No, we see a ped. Neurologist who has been very helpful with treating his pandas symptoms. We live in south Mississippi so Lyme is not really a factor here. There are no Lyme friendly doctors anywhere close. How do you actually treat the virus other than treating the symptoms while the virus runs it's course? What are my options?

Well, on our way home from a much needed spring break vacation the entire family all started running high fevers with aches and pains and extreme tiredness, sore throat, etc.... I assumed it was viral because of how fast it hit. My ds12 is currently on augmentin and that was doing nothing to help this. Anyway, his pandas symptoms have seemed to improve as his immune system is busy trying to fight off this new virus. So, after four days of fever, I decided to take my daughter in just to see what it was, and she tested positive for mono. I did not want to pay multiple co-pays until I knew what we were dealing with. Anyway, just wondered if any of you have any advice on what to expect as far as pandas flairs after mono, or epstein Barr Virus. Just trying to prepare myself. Should I just keep giving Motrin while the fever persists, what about abx.... I can increase his dose if necessary. Just want to try stop this from turning into another bad pandas episode. Any advice is appreciated. Thanks Linda

Congratulations on getting accepted for the study. We have not done ivig so I cannot speak about what you should expect, but just wanted to wish you all the best. Anxiously awaiting the conclusion of the study and the results. Did they happen to mention to you when the study will end and how soon the results will be published. Just curious.

Whenever I buy salt never know if I should get the iodized salt or not. I don't see any adverse reactions either way, just wondering what is better for you.

Just curious has anyone said if they think that the pandas caused the lesion, or the lesion caused the pandas. How do you plan to proceed? Are you continuing with the abx, and supplements? Sorry for all the questions and maybe you won't have any more info until you see your neuro. Just basically thinking out loud here. It must be very scary for you. I hope you find out more answers and get treatment.

Thanks for the update. When did he start the abx? Have you noticed any slight improvements. Remember it will take time, it will be saw-toothed, but you should start to have more good days each week/month. When my son started with overnight tics I lost about ten pounds in a month and I spent days/nights up doing research. We have all been there. Take care.

Well, amoxicillin does not work for a lot of our kids so stay away from it. My son is on augmentin, others have success with zith. So I would start there. Good luck. If you can't get her to support you then don't stop fighting, move on to another doctor ASAP.

In the year or so we continually tried to cease the abx? Yes, though it wasn't an immediate return. I'd say it took up to 2 weeks or so to return to the "base line" where he'd been before we tried cutting back or ending. Same with us except this time it took between two and three weeks to get back to his baseline.

Don't know how much you have seen on this forum, but Pandas often affects siblings... Sounds like your children may all have pandas traits.

Since you are just now putting this all together, I agree with the above posts and say you should try gather all of your previous medical records and try to connect the dots. If you could come up with a convincing argument and try to explain it to a doctor, maybe he/she would be willing to do a trial of abx to see if you see any improvement. The most constant thing I have noticed about most pandas kids is that they typically respond well to abx. Maybe not long term, but even if you see short term relief, you will know you are on the right track.

I stopped abx cold turkey on Christmas eve and my ds12 did not have his symptoms return. In the past when I tried to stop or wean him off the symptoms returned within days, but this time they stayed away. I also thought he seemed even better than when he was taking the abx. This lasted a little over a month, then bam.... He got a cold or something and also exposure to strep at school. His tics and anxiety and hyperactivity/fidgety returned all at once. Now he is back on abx, and the recovery seems to be taking longer than I would like. I HATE this. Just do whatever you can to try limit exposure this time of year.

Sounds just like my son when he was in 5th and 6th grade. HATED to read. I would not stress out over this too much. As long as he has found some books that interest him. My son also only read wimpy kid and big Nate type of books. He is now in seventh grade and doing fine. What I have found is that once kids get to jr. High, there is not near the emphasis on reading that there was in the elementary grades. They start changing classes and the focus just really changes. No more reading grades to worry about. My son is In jr. Beta club and holds a 93 average. He said he was just never interested in other types of books. And after seeing some of the required reading type of books I understand why. I never really liked to read either so I can't really blame him. Really all I am trying to say is that you as his mom should really not stress out too bad over this because he will be fine. Since pandas hit us here, I find I don't have time to stress out over the little things. keep watching the eye roll thing. It may or may not be a tic. My son had this as well, but has since "graduated" to a sort of head nod/hair flick type of tic. I never know from one day to the next what to expect.

Wondering the same thing... What kind of test? Never mind I see your response.

Hi thinkgut....., I skimmed the article you posted but am somewhat confused. You seem very knowledgable and I think you are on to something with your theory, so maybe you can help me understand. I get that certain probiotic strains are able to help your body fight toxins and bad bacteria, but if the strep is in the tonsils or hiding under biofilms, etc... Or even harvesting in the ear or nose, how can gut bacteria help fight that? I do give my son culturelle every day, do you think that is one of the better strains? Thx Missmom

They say older kids don't seem to get strep as much, but that is not seeming to be the case around our school. Or it may be that I am just paying attention more than most people, because when I hear any mention of strep I panic... My son is in seventh grade and just changed schools from an elementary k-6 school, to a high school 7-12th. I was hoping that now that he was not around the little children any more he would be "less"exposed... Anyway, not the case. It is so frustrating.