Possible pandas in my 4yo...

[Thundersweet]

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

[WorriedDADNMOM]

Few things:

 

1) why is your kiddo unvaxed?

 

2) Any behavioral stuff in the mix? Tantrums, crying spells for very small issues, Oppositional defiance????

 

3) As for the ABX....i would try PENVK to start.....If the tics stop or slow down....Then Your on to something and pandas is a possibility. If Penicillin allergy is a problem....then for many here, Azithromycin(Zithromax) is a possible start. BUT, I would do probiotics and Sachromyces Boullardi in conjunction with the Zithromax. This will mitigate gut dysbiosis.

[Thundersweet]

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

[Thundersweet]

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

[BeeRae22]

couple of things.....

 

--having a tic doesn't necessarily mean Pandas, but if you have strep in your recent history and the pediatrician is willing to give you antibiotics, than I would definately use them-- couldn't hurt.

 

--Pandas and Pans is usually marked by a sudden onset of symptoms- does he have any other symptoms? I wouldn't say that a meltdown about bloodwork from a 4 yr old means anything if it hasn't happened otherwise. But I would keep my eye out for anything unusual.

 

--your ped is wrong. He could absolutely respond to the antibiotics in regard to tics if he has pandas. Happens all the time! If he doesn't respond and has no other symptoms, it may not be pandas! (hopefully for you!)

 

 

.. best wishes to you and your son!

Edited August 30, 2014 by beerae22

[TeamTyrion]

Getting vaccinated is a personal choice and it needs to be based on what you think is best for your own child; obviously a parent is going to prioritize her/his own child above the potential future welfare of other people.

 

I'm sure Thundersweet chose to include that information about vaccinations in order to get informed responses, not to be judged.

 

Thundersweet, we use Ultimate Flora (50 billion) but a word of caution: start slowly! Sprinkle just a bit in his drink/smoothie and then add a bit more everyday. Look for rashes on the body, which may be a good thing (herxing from bad bacteria die-off). Try giving epsom salt baths to help with detox too. Another word of caution: start with small amount of epsom salt and work up. Some kids have a sulfur intolerance and epsom salt baths are really magnesium sulfate (hence contain sulfur).

 

Consider also oral magnesium (citrate form is probably the best) - check chemar's signature for "treatments that have helped my son" and you will see all the recommendations.

Edited August 29, 2014 by teamtyrion

[Thundersweet]

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!

[BeeRae22]

I retract that and apologize...

[Thundersweet]

Beerae22, no big deal:)))

[WorriedDADNMOM]

The reason I asked about vaxxing was previous adverse reaction in other kids might indicate sensitivity to vaccinations/infections. Thus the reason why not vaxxed. We had adverse reaction to MMR in worst pandas/pans kiddo......other two kiddos.....1 adverse to 1st and 2nd mmr......other no reaction to vaccines, but horrible anxiety from EBV and strep co-infections.

 

We use Klaire labs for probiotics(lactoprime plus) and sach b.

 

I would be curious to know the rash on the face......is it around nose and mouth more than other areas??? Impetigo maybe??? From our experience, skin issues flared more and let down of mucous from sinuses more after treatment started with ABX.

 

Let me know if you have any questions.

[Thundersweet]

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

[WorriedDADNMOM]

thundersweet--------------PM'ing you.