Thundersweet

Thank you everyone! I'm going to see a neurologists when I get back from vacation. Thanks, Sandy

We are not sure if he has pandas but my ped is going by an elevated DNase, me thinking I had strep a couple months ago, him complaining of a sore throat, and a sudden onset of an eye blinking tic a few weeks later. Since he had no documented case of strep, she let us try the antibiotic. After about 6 days, eye blinking tic is 95% gone. However, now he is doing something weird with his mouth. Like a stretching of his mouth and nose. He mainly does it watching tv, and some in the car. It's a strange looking thing he's doing. Like a fish almost! I gave him benydryl yesterday, maybe that's why he's ticcing differently today? He does have allergies to dust mites but this doesn't really look related. What does this mean? Do pandas tics usually change like that? I really thought I was on to something figuring this all out. I hope that makes sense. I thought he was getting better and now this. Maybe this means it's just a tic and not pandas at all? Thanks, Sandy

I am definitely planning on checking this out. I'm meeting with someone that can check for irlen syndrome or photosensitivity when we get back from vacation. Thanks, Sandy

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

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

I think the rash on his face was from the epsom salt baths. I've cut down on the baths and started finding his face. He's good now! So Ive read here, there, and yonder that 5 days wasn't enough if he truly had pandas. My son finished his antibiotic 2 days ago. I didn't think if necessarily helped until he was finished with the azithromax. I've noticed a huge decrease in his tic. I spoke with my ped this morning and she agreed to give me 5 more days. Even though she did some calling around to our childrens hospital immunologist who said antibiotics were not the way to treat. He said something about referring us to a neuro and they would normally treat with ssri or something along those lines. I'm sure I just butchered the name. He said a big fat no to antibiotics! She's still letting me have them because she knows I won't rest. Does anyone have any recommendations on a doctor I could have her call for information? She is willing to help me and I would like to have her call someone that has other ideas for treating pandas. Thanks, Sandy

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.

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, no big deal:)))

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

Thank you!

beerae22, I'm not here for a debate on vaccines. I appreciate your other advice though:) teamtyrion, I actually did buy the Ultimate Flora 30 billion. I'll definitely start slowly. I have been giving him epsom salt baths but he's getting a rash on the face. His body is good, just the face. I've stopped the baths until it clears up. Could be totally something else but just in case!

My 4yo has an eye blinking tic when watching tv. He rarely does it otherwise. What does this mean? If I get rid of the tv/iPad movies will they disappear? I'm so worried. Nobody in my family had tourettes as far as I know. I do have cousins that have had a couple of tics, one with a vocal and one with a facial. Both disappeared after 6months to a year. One was specifically related to a stressful competitive gym situation. He can play games on iPad or tv and not have them. His favorite game is minecraft. Not a single tic during this time. We are investigating Pandas as well. His strep text were negative but his DNase was elevated. I think I had strep about a month or two ago. Never went to the doctor, did a cayenne pepper/garlic home treatment. Never again! He is currently on day two if azithromax as a trial. Thanks, Sandy

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

Also, any particular probiotic brand recommendations? I see the Sachromyces Boullardi on Amazon. They have some for kids as well as adults. Is the adult version ok? Sandy

He is unvaccinated by choice. He seems to be ok other than the tics. We did have a huge meltdown of sorts the day we had a blood draw. Really bad crying, tantrums, ect. Other than that, he's pretty normal. He is allergic to amoxcillan so she has called in Zithromax or something along those lines. She said it quickly but I think that's it. She says it will make no difference in his tics though since the antibiotic works on the strep infection which he currently doesn't have. Is this true? Or do most see a difference? She is doing the antibiotics because she knows I won't rest unless we try. Sandy

My 4yo son suddenly developed an eye blinking tic. Most of the time this only occurs during the times he's watching tv. He does it other times just not as frequently. So far, this is our only symptom. About a month or two ago, I developed what I thought was strep. Very severe sore throat, white spots on throat, ect. I did a home remedy of cayenne pepper, garlic, and honey. It did go away a couple days later. I should have gone to the doctor...but I didn't. A few days later, my youngest complained his throat hurt. I have him motrin with the intent to take him him if it wasn't better in a day or so. He never complained again. Fast forward to me posting on another board about this sudden tic my son was developing. This is when I heard about Pandas. So far, we've had an EEG to rule out seizures. My daughter has absence seizures. I convinced my ped to check for pandas. His strep culture was neg. His ASO titers were 97, they like it less than 150. This seemed good. I just got his DNase antibody back yesterday and that was elevated at 264. Doc days this indicates strep within a month or so. My ped is going to call the immunologist today to see what they think. She thought we didn't need to do anything at this point because his strep test was neg. She is willing to let me try an antibiotic. Should I do this? What can it hurt? My ped has dealt with pandas before but the strep was documented before the tics were brought on. She is very willing to consult others where need be and seems eager to figure this all out. Does this sound like it could be pandas? I don't know if it means anything but my son is unvaccinated. Thanks, Sandy