Need advice for son, possible PANDAS

[nurseg]

Hope anyone out there with any feedback on typical treatment protocol in PANDAS children once they finish their initial antibiotic will reply.I've contacted a few of the ladies on this board with other questions(thanks for the replies), and I'm relying on this site for much needed help. My 7 yr old son has not been diagnosed yet with PANDAS, but from what I've read he may have it. He sees his pediatric neuro for the first time 4/2. He was diagnosed with strep 3/15 and started having neck jerking tics 3/17.He was on Amoxil for 5 days initially, then his pediatrician changed it to Keflex(was suppose to be a 10 day supply but he just took the last dose tonight for only an 8 day supply?) We are also doing Kid's Calm daily,and Epsom salt baths nightly. His tics have improved slightly, but is still having them frequently and daily.

 

Where do we go next? Someone mentioned a Prednisone burst if the strep is gone(pediatrician doing a throat culture next wk,and ASO/Anti-DNaseB were drawn last week)? I'm trying to be patient, but I was hoping to see more progress with the tics than I have at this point. Also he threw up a large amount at 3:30 this AM,and has had nausea all day(the worst tonight before bed). Is this common with this disorder?Could it be yeast? He has missed several days of school this month. Before the strep, he missed only two other days since starting Kindergarten.

 

How common is it for other changes to come on(other motor tics/sensory tics/OCD,ect) if any. The head jerking is the major one we're seeing. We have noticed him making mouth movements and twirling his hair occasionally, but his teacher says he's not being noticed by the kids in the classroom with any of the tics so far.

 

 

Does anyone have a website to find a DAN or Naturepath doctor?

 

Thanks in advance for reading this lengthy post. I appreciate any advice. Glenda

[emma1]

The vomiting does not sound like part of the PANDAS to me. Perhaps he has a stomach virus? My biggest concern would be whether he actually "got" the antibiotic -- or did it come back up?

 

Did you notice any improvement once on the antibiotic? My daughter's titres came back high, but what convinced me that the strep and symptoms were related was the night/day effect of antibiotics. (Though the tics might not go away immediately -- in some cases they don't. But did you notice any difference?)

 

I think people on this board have seen a variety of symptoms: tics (including the "piano playing" with the fingers), vocal tics, ocd, bathroom issues, mood swings, ADHD. Most with PANDAS note a dramatic and immediate change -- nothing gradual, at least not usually.

 

For us, the antibiotic helps and so we went on long-term antibiotics. I do know others have had to try different antibiotics as the first one didn't work. (We are on Pen VK now that works better than Amoxil -- I think because the Amoxil is pink and probably has red dye in it.) Zithromax and omnisept are also popular ones to try. We haven't used those -- augmentin worked best for us.

 

Good luck -- I know how hard it is when this starts. You really just want it to stop!

[bmom]

Well, we have been down this path over a year, yet are just starting to figure some things out. My sons first explosion was Feb. 07. I did not know it was PANDAS and did not read of it until his symptoms were gone. Now a llittle over 2 weeks ago explosion number 2. This time I was more informed and I had just been diagnosed with strep throat. Well 10 days on Zithromax: first 4-5 his tics actually seemed to increase and then we had 4-5 of almost no symptoms. Day 11 arrived with no antibiotics in his system and we are back to continuous ticcing. So, I guess in some ways it is a blessing because now I know it is likely PANDAS and I dont have to guess. Anyway, I convinced the doc to give us more antibiotics and we are heading to a specialist in April armed with info and praying that they will be informed enough to recommend prophylactic antibiotics. Maybe because you did not see a decrease, they will not increase after the antibiotics stop. If so, I would have him checked to make sure the strep is gone-in my sons case it was, yet the antibiotics kept his symptoms at bay. Perhaps you could ask the doc to do another round of antibiotics if symptoms increase just to be sure. Or maybe a low dose daily until you could get to your appointment. In our case, we are doing a great diet, epsom salts nightly, and supplements. Yet to be honest, they are still tics almost every second while off the antibiotics. It is the only way to control them. Perhaps your ped will be willing to try a different antibiotic if tics increase too. My ped is very closed minded and it is only the natropath doctor that will do the antibiotics. Good luck and hoping that you can find an informed doctor. That seems to be our biggest challenge now!!!!

[nurseg]

The vomiting does not sound like part of the PANDAS to me. Perhaps he has a stomach virus? My biggest concern would be whether he actually "got" the antibiotic -- or did it come back up?

 

Did you notice any improvement once on the antibiotic? My daughter's titres came back high, but what convinced me that the strep and symptoms were related was the night/day effect of antibiotics. (Though the tics might not go away immediately -- in some cases they don't. But did you notice any difference?)

 

I think people on this board have seen a variety of symptoms: tics (including the "piano playing" with the fingers), vocal tics, ocd, bathroom issues, mood swings, ADHD. Most with PANDAS note a dramatic and immediate change -- nothing gradual, at least not usually.

 

For us, the antibiotic helps and so we went on long-term antibiotics. I do know others have had to try different antibiotics as the first one didn't work. (We are on Pen VK now that works better than Amoxil -- I think because the Amoxil is pink and probably has red dye in it.) Zithromax and omnisept are also popular ones to try. We haven't used those -- augmentin worked best for us.

 

Good luck -- I know how hard it is when this starts. You really just want it to stop!

I'm pretty sure he got the Keflex absorbed before the vomiting(took it 6 hrs. before), and I can tell there has been some improvement. I guess every child's progress is different. Has your child taken any steroids? Do you know if this is something helpful?

[bmom]

We have not tried the steroid burst, but it is something I am going to ask the doctors opinion about it. What I have come to understand is it is not the strep that causes the tics, yet the antibodies that attack the basal ganglia and then the brain gets inflammation. Steroids reduce inflamation, so this sounds like it would help the cause. I do not know of the side effects, if any. I believe most side effects are mainly for long term use, but I am not sure.