If a trial of azithromax takes care of eye tics...

[Thundersweet]

Does that confirm Pandas? I posted my story below today but now im wondering about the antibiotic. I started my 4yo on this med today. Just curious if we have success, does that confirm pandas?

 

Sandy

[BeeRae22]

It might

 

Maybe, possibly, probably, likely...... ugh! Terrible, yet incredibly frequent words related to Pandas & Pans! We never really get a "definitely", and when we do, we're super excited- "positive for Lyme", "definitely strep". No one but a Pandas/Pans parent could understand that

 

Overall, I would say yes. It would confirm something, wouldn't it??? If you take antibiotics, and your symptom goes away, than the antibiotic took care of something.... right?!

[BeeRae22]

ps. It may not happen immediately either. If it is Pandas/Pans, it could take a few weeks of abx to see any improvement of symptoms. I would consult a Pandas doctor.

[Thundersweet]

Thank you!

[Missmom]

I would say yes as we'll. It tells me that your child's tics are infection related. Don't be alarmed if the tics come back though if you are only doing a short trial if antibiotics. It may take several rounds before things really subside.

[Thundersweet]

Thanks y'all! I do think I'm seeing some improvement in just 24hours. He was prescribed azithromax for 5 days. Our ped is open to learning and offered to make some calls to discuss with the immunologist at Children's. Should I request a longer period of antibiotics while we try to sort this out? There is only 2 doctors on the list for Ga that I saw on the Pandas Network. Neither would be covered by my insurance:(( My ped seemed fairly knowledgable but admitted she doesn't know a lot. She seems eager to learn and help though.

 

Thanks,

Sandy

[BeeRae22]

That's great if your ped is open to learning... I hope they continue their interest in helping your child-- just be prepared for that interest to wane quickly most aren't willing to go the extra 1,000,000 miles that are usually required to treat Pandas, and even if they are, they aren't experienced enough or knowledgeable enough to treat effectively Pandas treatment is most effective when treated early, so if the ped drags their feet for too long, you should get your son to a pandas doc as soon as you can. You might want to do that anyway.

 

In the meantime, Push for longer term abx if you can. If it's pandas, 5 days is most likely not enough to take care of anything watch for unusual behaviors, and start taking notes each day-- if this continues, those notes could really help for evaluation later on. Pandas symptoms can come and go too, so keep taking notes even when you see improvement too!

[Thundersweet]

beerae22, I'm watching him today and now I think maybe I'm not seeing a decrease. Maybe yesterday was just a good day. For what it's worth, this eye blinking tic, is mainly just during the time he's watching tv/iPad. This doesn't really occur when he's playing minecraft, which seems weird. I'm thinking it may have something to do with his concentration. Minecraft isn't a fast paced video game, he moves things around and builds. I'm so confused....

 

Sandy

[BeeRae22]

Is that his only symptom? And it's only when playing iPad and watching tv? I'm not a doctor, but if that's it, I'm guessing its not pandas. Which is great! Usually a kid with pandas becomes a different child-- unusual behaviors, ocd, odd, tics, neurological symptoms, etc.

[Thundersweet]

What you said is what I was thinking:)) it is mainly when he's watching tv. I just thought maybe that was his trigger. I'm now done with antibiotics and we are still in the same boat. I am no longer thinking PANDAS.

[Missmom]

Sorry, I have not read your first post, but just curious did he test positive for anything? Has he been sick lately or had any vaccine? Anything that would stimulate his immune system. If your answer is no to all of these, I would say no pandas/pans but if any of the answers are yes, I would dig further. Zithromax may not have been the right antibiotic.

[Thundersweet]

He had a normal ASO titer, elevated DNase, neg strep culture. His only symptom was a sudden blinking tic, mainly seen while watching tv. It came out of nowhere! Doc says the elevated DNase means he's had strep within the last month or two. I had what I'm certain was strep a couple of months ago. It was a Friday and I was lazy..I did a home remedy of cayenne pepper, garlic, and honey. It took care of it by Monday. My son complained his throat hurt one day and then if was gone. I didn't think anything about it...didn't even know about pandas really. He's doing great now. The tic is getting better every day. He finished his 5 days of azithromax 2 days ago. From what I've learned though, 5 days isn't enough. Doc agreed to another 5 days so I'm doing that now.

 

Sandy

[Thundersweet]

Also, I realize that in pandas cases, kids can become a different child. Could it be with my sons case, we caught it super early, like within 1 1/2 months, so he didn't have time to reach that point??

 

Sandy

[kim]

Sandy and others new to PANDAS/PANS

 

Have you read the pinned thread at the top of the forum? There is a wealth of information there copiled by BUSTER and others.

 

Helpful Threads & Links for PANDAS
http://latitudes.org/forums/index.php?showtopic=3928

[Mommy2MCL]

We only had the tics for about 3 months before the other symptoms hit...