How patient should we be about waiting for improvement

[parents4eyes]

xx

Edited September 9, 2010 by parents4eyes

[kimballot]

I am curious if your PANDAS doc tried a steroid burst and also if your daughter has been tested for allergies.

[Joan Pandas Mom]

I think Sammy started to see improvements around 4 months.

[T_Mom]

Parent4eyes,

 

I am thankful you have tried, and are having success with, antibiotics.

In our experience, as long as you are seeing a TREND in the right direction, this is good and means progress.

 

(Holding the eyes shut--seems to be an odd symptom a number of Pandas-hit kids have had, our d did this too.) Remember the construct of "turning back the pages", wherein it may be a replay or shuffle of new/unusual behaviors as healing happens (thank you Dr K for that observation.)

 

It could take months.

 

When we hit a plateau for a month (ie., no significant improvement being made) we added a steroid burst to the antibiotics and that really helped our d. (2 steroids bursts in one year.)

 

Overall it was a full year of healing. Rest, vitamins, omega 3, probiotics. Healing.

 

You mentioned that you increased the azithro. Is she on "full strength" now for her weight? Meaning full strength being what they would give her if she had an illness?

Best to you--be patient and watch the trend would be my my advice.

[parents4eyes]

x

Edited September 9, 2010 by parents4eyes

[parents4eyes]

x

Edited September 9, 2010 by parents4eyes

[tapiash]

Parent4eyes,

 

I am thankful you have tried, and are having success with, antibiotics.

In our experience, as long as you are seeing a TREND in the right direction, this is good and means progress.

 

(Holding the eyes shut--seems to be an odd symptom a number of Pandas-hit kids have had, our d did this too.) Remember the construct of "turning back the pages", wherein it may be a replay or shuffle of new/unusual behaviors as healing happens (thank you Dr K for that observation.)

 

It could take months.

 

When we hit a plateau for a month (ie., no significant improvement being made) we added a steroid burst to the antibiotics and that really helped our d. (2 steroids bursts in one year.)

 

Overall it was a full year of healing. Rest, vitamins, omega 3, probiotics. Healing.

 

You mentioned that you increased the azithro. Is she on "full strength" now for her weight? Meaning full strength being what they would give her if she had an illness?

Best to you--be patient and watch the trend would be my my advice.

 

Can you tell me more about the steroid bursts?

[norcalmom]

My son is 95lbs (11 years) and is on 250 prophylactically. We started at 500, and occassionally go back up to it when he is having "blips" as I call it. He was winding down from a major exacerbation when we started azith, and I would say within 5 days on the 500mg/day had major improvement. He has not had a major exacerbation since, but has had a number of minor ones(blips), that have me fearful. His stomach does not tolerate the 500mg very well. We have to give once in morning, once in evening, and then scheduling probiotics for 1-2 hours after each time becomes a challenge.

 

If her stomach is good, you might want to try some Advil for few days. I find Advil is at least as helpful to my son as increasing the antibiotics. Maybe some kids are hleped more by the antiinflamatory nature of the azith - in which case why not just use a real antiinflamatory for a few days is my theory.

 

He has had periods of almost complete remission. If you want to put numbers on it, he had tics, compusions, disgust, irritability, nightmares, separation anxiety, bed wetting, insomnia, obsession -fear of death. When in exacerbation. At baseline he experiences minor tics, sometimes an infrequent computsion,disgust, and irritability. So, the number symptoms went from 9 to 4. And the severity of the four went from off the charts to bearly noticible. HIs separation anxiety took longer to go away, but is gone now. I would have to put that symptom almost in a separte category. I would say that it just slowly went away after about 4 months...kind of in waves, but I don't recall it being closely tied to the antibiotics and other symptoms.

 

The first symptom of a "blip" coming on for him is increase in tic, and/or some insomnia. A blip for us will bring his existing symptoms, tics, compulsion, disgust, irritability, back up, but not to full exacerbation levels. I'd say the tic is the easiest to measure becasue you can see it going on and put a number on it. For him, a "blip" would mean 2-4 weeks of about 10-20 times the number of tics (in frequency) and adding a tic or two. This typically happens right before he gets a virus. Once he has a cold or cough and his body has started to work through it, it goes away..in the middle of the cough, cold. In the exacerbations his tics were 1000's of times the frequency at baseline.

 

We tried a steroid burst, but he got a cold on day 3, so we had to stop. This was in the beginning of his diagnosis. I saw the symtpoms ramping up, and having only experienced two major exacerbations thought I would nip it in the bud with the steroid burst. In retrospect, his symptoms were ramping becasue his system was trying to fight off a cold, and the steroids probably made it easier for the virus to take hold. It turned out to be a "blip". Based upon that experience I would recommend making sure your child, and those around her, are at their healthiest if you do a steroid burst.