Exacerbation, need advice

[TracyRee]

This is ds's first pandas exacerbation without a positive strep test. In the past it was always clear cut, OCD symptoms led to positive strep test and antibiotics made symptoms go away in a few days.

 

We couldn't keep DS strep free even on daily antibiotics, so he had a t&a last summer. Hasn't had strep since

 

About 2 weeks ago he started wiping his mouth with his tshirt compulsively. Every 5 seconds. His lips ended up raw and swollen and bleeding. Strep culture came back negative, but he ended up with a nasty virus a few days later with double ear infections and double pink eye.

 

I got the mouth wiping under control by applying a thick layer of lanolin every 1/2 hour. He hated the feel of his shirt sticking to the lanolin, and the lanolin healed his lips, so he stopped after about 5 days.

 

He's on cefdinir for the ear infections but his behavior if way out of control. This is new for us and I'm at a loss how to handle him and what to do to get him back.

 

He's explosive and over the top emotional. He screams and shrieks and weeps all the time unless he's playing a video game.

 

He's turning 8 in a few months. I've never seen him like this and don't know what to do.

 

I'm giving omega 3's and probiotics daily.

 

Does anyone have any advice?

[PowPow]

Do you have a PANDAS doc? Have you tried zithro or augmentin as a longterm treatment?

I know this is horrible for you and him.

Steroids from our PANDAS doc helped when my girls hit this point.

[fightingmom]

This is very much how my son gets. We have been on augmentin and Zithromax. We didn't really see results until we started the Zithromax and I had also added a few supplements at that time. Though we saw an immediate improvement and I am inclined to think the zith has been the most helpful.

 

We have since learned our whole family is plagued with very high mycoP titers/infection. Also, our dog just tested positive for strep and is being treated.

 

Just a few things for you to consider besides strep in your son.

[ptcgirl]

We had a very similar story after my daughters t and a. She was great for nine months then BOOM! Came back but without strep. Lyme, sinus infections, etc. Augmentin is the biggest help for her as far as abx. We r about to start Ivig so I'll keep u posted on that.

[colleendonny]

Do you have a PANDAS specialist? I wil also chime in and say that my daughter had the greatest improvement when we added azithromycin to Augmenti too.

[hugs2day]

Does he have any loose teeth? That can also be a cause of exacerbaration. If he does that would be a big clue, it always is for us.

 

Zithro is what keeps my son stable and I increase the dosage during exacerbations due to strep exposure or loose teeth.

[smartyjones]

have you tried motrin? i used to refer to it as "magic motrin". you could search the forum for posts and it may be something to buy you some time as you figure out options.

 

good luck

[bulldog24]

Being exposed to strep can do this. I would start looking at family members and your dog.

[bulldog24]

My dog is also a carrier

[sf_mom]

Has anyone mentioned the possibility of Kawasaki's Disease diagnoses. When you mentioned the double conjunctivits and chapped lips.... followed by body rash I immediately thought you should investigate with your Dr. His fingers, palms and feet might be peeling not just red. The irritability is extreme and they are typically very restless especially at night. My son's fever would remit with advil but rise again when stopped. The treatment for Kawasaki's is hdIVIG. It will be covered by insurance. What we found post Kawasaki's is that my son was suffer from multiple chronic infections and why he may have had such an extremely immune response at the time.

 

First phase:

 

- Fever, which often is higher than 101.3 F (38.5 C) and lasts one to two weeks

 

-Extremely red eyes (conjunctivitis) without a thick discharge

 

-A rash on the main part of the body (trunk) and in the genital area

 

-Red, dry, cracked lips and an extremely red, swollen tongue ("strawberry" tongue)

 

-Swollen, red skin on the palms of the hands and the soles of the feet

 

-Swollen lymph nodes in the neck and perhaps elsewhere

 

-Irritability

 

http://www.mayoclinic.com/health/kawasaki-disease/DS00576/DSECTION=symptoms