Looking for suggestions & advice

[AmySLP]

My daughter had a ramp up in symptoms of emotional lability, intrusive thoughts, raging over the last few weeks. Her therapist thought I needed to have her seen by psych and consider anti-depressants ....SSRIs or natural alternatives. I wondered if she was heading into a PANDAS flare and needed an abx increase. Well I was right...tics have returned (its been about 6 mos. since the last episode). They are the worst in the pm...almost not even noticeable in the daytime. She is complaining that her eyes actually hurt from all the blinking. She has throat clear and repetitive movement of her fingers in front of her eyes, all which are old tics. She has a few itchy hive like bumps on her elbow. She is mature enough to describe what's going on but so confused about it. Started a clindamycin cycle, as this has helped in the past. She had been doing ok on zith. 2x/week for about 6 mos., but I slacked a few times. Every time I think we may have beat this, PANDAS returns at least every 6 months. This always makes me wonder if IVIG could help heal her. Since she was 4 , It's been 4 years, 4 PANDAS docs later after 6 months of strep at time of onset. So tired of just putting a band-aid on this disorder!

[beeskneesmommy]

DS is 6.5. DX at age 2.5. Started treatment for PANDAS (not just the 10 day run for the Strep) at his acute episode post T&A just after he turned 4. We did abx treatment for 2 full years, the bulk of which was Azith and Augmentin daily, therapeutic doses. He moved forward well on this journey, but was not 100%. He also still flared when exposed. We finally decided to do IVig last Sept, when he had just turned 6. The only regret that I have is that we did not do it a year earlier. It was a bumpy ride, but day by day many symptoms fell away. We live a much easier life now, with many, many weeks at a time at 100%. He is still flaring occasionally at a much more minor level. None of his teachers nor family friends can see it. We see it, however, although again, to a much lesser degree than before. For this reason, we have decided to do IVig again, to try to push him all of the way across the finish line. I would highly recommend investigating the possibility with a specialist. IVig tends to be more effective for the little ones. We are choosing to do it now for this, as well as several other reasons.

[AmySLP]

You have seen several of the same docs as I have I recall (Latimer, Bouboulis, Trifletti, and Elia) ....who actually did the IVIG? The response we got so far is that if she's controlled on the ABX then its not an option. I instead wonder if she is more likely to respond due to that. She goes to dance competition next weekend and of course all their dances are late at night, when the tics really get going. If her body is moving actively then the tics are reduced or eliminated, but I don't know if that's the case with the eye blinking. Need to squash this by next Saturday and hoping that clindamycin for 10 days will do that this time around like it has in the past.

[laure]

Hi Amy,

I know we have followed similar paths over the last few years, and live only a little over an hour from eachother. My dd 12 did test positive for lyme via Igenex, (not initially, but after treating for PANS for 4 months back in 2010). If you have not done that, I would urge you to. My daughter's constant PANDAS symptoms, OCD, and recurrent strep were helped by aggressive lyme treatment. Her doctors were PANS literate as well.

Maybe you have already tested, so I apologize in advance for being too lazy to read back through your history

Good luck with the dance recital!

Laura

[pr40]

did you try NAC? it works along similar lines as SSRIs.

[dcmom]

HI Amy- Sorry your dd is going through this. I have to agree that everytime I let myself think we may have this thing beat, it flares up to teach me who is boss.

 

Actually, to be honest, I do not believe in a cure for pandas, at this point. As with other autoimmune diseases, MS, lupus, RA etc. there is not a cure (currently) but there is successful management for many. This is what I have come to focus on. For my girls, usually they enjoy long remissions at 95 to 100%. We do, however, see flare ups. Some small, some not so small- probably depending on the trigger, and how "healthy" they were when exposed to the trigger.

 

We have been able to manage this disorder with no daily meds. However, if we see any appearance of symptoms we add a week of zithromax and advil (3x per day). If by the end of this week, they are still struggling, or are getting worse, we consider steroids. My older dd seems to need one short steroid burst per year, the younger one (more affected at this point) seems to need steroids two to three times.

 

For us, the sooner we intervene with meds- the less time it takes to heal.

 

Have you used steroids before with any success?

[AmySLP]

did you try NAC? it works along similar lines as SSRIs.

 

Not sure what this is?

[AmySLP]

HI Amy- Sorry your dd is going through this. I have to agree that everytime I let myself think we may have this thing beat, it flares up to teach me who is boss.

 

Actually, to be honest, I do not believe in a cure for pandas, at this point. As with other autoimmune diseases, MS, lupus, RA etc. there is not a cure (currently) but there is successful management for many. This is what I have come to focus on. For my girls, usually they enjoy long remissions at 95 to 100%. We do, however, see flare ups. Some small, some not so small- probably depending on the trigger, and how "healthy" they were when exposed to the trigger.

 

We have been able to manage this disorder with no daily meds. However, if we see any appearance of symptoms we add a week of zithromax and advil (3x per day). If by the end of this week, they are still struggling, or are getting worse, we consider steroids. My older dd seems to need one short steroid burst per year, the younger one (more affected at this point) seems to need steroids two to three times.

 

For us, the sooner we intervene with meds- the less time it takes to heal.

 

Have you used steroids before with any success?