When to call for steriod burst?

[TriangleNC]

Hi! I am a newbie on this forum and have posted a few times, so thanks to those of you who have answered my previous questions. My son has been having pandas episodes for the past almost 2 years. We recently in mid October had our first appointment with Dr. L, who put our son on augmentin twice a day long term. We did see a decrease in anxiety level after about the first week and had not been having tics either. Our sons first pandas episode occurred due to a sinus infection caused by strep, and subsequent episodes caused by other infections (viral, myco. pneum.) in addition to strep. Dr. L said at the appointment that if he has flare ups that she would do a steriod burst.

 

Last week Monday he had a minor cold with some pandas issues flaring up with it such as grunting tic, lip licking, crossing eyes, bed wetting, some minor meltdowns/tantrums (had been doing fairly well since starting augmentin). Cold is gone and pandas issues seem to be subsiding this week. My question is this (especially to those of you who may see Dr. L) - at what point should I call in to Dr. L to have a steriod burst done? I don't want to call in too soon, however I don't want to wait too long either. Not sure what to do?

 

Also, Dr. L said that it could take a year or more for the brain to heal based on the length of time that has gone by for prophylactic treatment to be started (our peds would not start any long term treatment except for 4-6 weeks of antibiotics during a strep episode). What has everyone's experience been like as far as healing time on prophylactic treatment? Very curious to know since he is having many issues in school with math learning, writing, handwriting, memory which I know can all be related to pandas.

 

Any advise will be greatly appreciated. Thanks!

[T_Mom]

Hi--I wanted to reply as our d has had 3 steroid bursts in the past two years. I fully understand your question: "...steriod burst done? I don't want to call in too soon, however I don't want to wait too long either. Not sure what to do?"

 

I think every parent on here understands that very feeling...When do I move ahead to try the "next step" of treatment--when are my child's struggles too much to bear for them (and the family) and we now must try something else. We are either there now, or have been there--

 

I can say that once we decided to go for long-term full strength antibiotics our d made fairly obvious and slowly steady progress week to week for about 4 months. (and I do mean slow and steady trending in the right direction!) Then she seemed to hit a plateau and "stay the same" for about a month. At that time, we felt it was time to try something to help her further. In our experience, use of the steroid burst helped when nothing else was changing with the antibiotics. They are not to be used lightly in that there can be various issues associated with the use of a steroid burst certainly. However, for our d they were a huge help the first 2 times.

[Megs_Mom]

We usually try 3-5 days of Motrin first, starting it as early in the flare up as possible. So far, that has held us from needing steroids, although they sit in the fridge for emergencies.