Starting oral steroid for the first time

[_Misty_]

Long story short, my daughter first developed PANDAS at age 6.  Amoxicillin worked wonders and was continued for several months.  Our happy world crashed down again about 6 months later at age 7.  This time we got into the clinical trial of IVIG at NIH.  This was in 2013.  My daughter ended up getting placebo, but she recovered on her own.  Over the next 5 years we really didn't have to deal with any severe PANDAS symptoms.  There were little blips here and there, but life was good.  A few days after Christmas this winter she started restricting her eating again, but we naively believed it would just be another blip since we weren't seeing any other symptoms to speak of.  Well, after a few weeks she had lost about 15 pounds and we consulted our pediatrician.  He couldn't find anything wrong that would have triggered this, but agreed to double her dose of amoxicillin. She showed some improvement, but then had to get two teeth pulled.  She started going downhill again.I don't know if it was related to the teeth being removed or not.  By this point she was showing more irritability and aggression.  Our pediatrician made a referral to a psychiatrist, which hasn't happened yet.  Anyway, due to the duration of her symptoms (10 weeks now) and severity of weight loss at about 15% of her start weight, our pediatrician is pretty motivated to get this fixed.  He has spoken with the team at NIH for treatment advice and added a second antibiotic and an oral steroid.  Here we are 5 days later and we just got the first dose of steroid in her because of medication/allergy fears.  We've never done anything beyond just an antibiotic so I don't know what to expect.  I am so hopeful this will be our answer so we don't have to proceed to IVIG, but we do have our amazing pediatrician's support if it comes to that.  Can anyone tell me how it went with a steroid for their child?  Improvement/side effects experienced and approximate timing?  Thank you!

[_Misty_]

Original poster here.  Oops!  Didn't mean to put this under tourrette's and tics, meant to have under PANDAS/PANS but I don't know how to move it.

[Chemar]

Hi

I moved it to PANS forum for you.

[bobh]

Our PANS son had a significant flare after a teeth cleaning about a year and a half ago, so I would not be surprised if teeth pulling contributed to your daughter's symptoms.

Unfortunately, oral prednisone did not seem to do anything for our child.  Neither did ibuprofen (sometimes called "the rescue med" - but not good to stay on ibuprofen for the long haul).

Have you tried ibuprofen?  Probably shouldn't do too many changes at once, but it is something you can try if the steroid doesn't come through.  I get the impression that it does for most, just didn't for us.

[_Misty_]

Chemar- thank you!

Ibuprofen hasn't shown much benefit. She's halfway through the steroid taper now and she says her OCD is better, but her eating hasn't improved. Her mood seems improved most of the time, but when she gets irritable it's like you lit a firecracker.  I'm afraid she's just so far into this flare and it's so intense that the steroid may not do it for her. Our pediatrician and NIH are pushing for hospitalization but we're holding out hope that she will improve. Her weight loss is so severe they are considering it a crisis. I would go tonight if I knew they would believe it's PANDAS and give her appropriate treatment. I just don't have that confidence. And to top it all off my other daughter seems to be entering a flare. She's never been officially diagnosed, but our pediatrician had lots of labs drawn today.  I started her on Aleve twice per day a few days ago. I'm so exhausted.

[bobh]

How is it going now - did the steroid improve symptoms as she tapered up?

Any lab results back for the other daughter?