Question about steroid burst as TREATMENT

[Stephanie2]

As some of you may know my boys are being treated by a DAN doctor for their PANDAS. The DAN doctors tend to do things "out of the box" and I want to bounce his treatment plan off of some of you experienced moms!

 

We have been using antibiotics since August and it seems now that the DAN doctor feels that my son is having a PITAND reaction rather than just PANDAS. So he feels that we need to move on to steroids as a treatment rather than just a test for ivig. He says that sometimes a 3-day "pulse" of steroids will be enough to get the child weeks to months of relief and then we just do it again.

 

He also said that if that doesn't work we can do a "tapered dose" where he starts at a high dose and tapers down over a month's time.

 

Does anyone have any experience with this? He also said that IVIG would be our next step if the steroids don't work, but that only United Health Care covers it if you don't have an immune deficiency. My son's immunoglobulins are slightly too high to qualify.

 

Any feedback?

 

Sincerely,

Stephanie

[dcmom]

Stephanie- My dd did a steroid burst (3 weeks: one week treatment, two weeks tapering) over a month ago at the start of a post H1N1 exacerbation. The steroids stopped the exacerbation from spiraling down at the first dose, after the fourth dose she was doing about 90% better. She is holding steady right now. I know Tmom had had great success with her dd doing antibiotics and two steroid bursts over a year.

 

Our current plan is to continue with antibiotics and use the steroids if she has another episode. She has some low level issues now, but for the most part is doing really great.

 

I would go for it....

[Buster]

the DAN doctor feels that my son is having a PITAND reaction rather than just PANDAS. So he feels that we need to move on to steroids as a treatment rather than just a test for ivig. He says that sometimes a 3-day "pulse" of steroids will be enough to get the child weeks to months of relief and then we just do it again. ...Any feedback?

It seems a reasonable approach (provided your child reacts okay to a burst). The prednisone should help reduce inflammation (and help close a BBB if open)and slow production of antibodies. Swedo did a controlled study for SC http://www.pedneur.com/article/S0887-8994(...0543-6/abstract where she showed that remission occurred in half the time on the Prednisone cases (54 days) versus Placebo cases (120 days).

 

Seems a reasonable approach, but I'd be careful of being on the pred too long as it has all sorts of other issues long term.

 

Regards,

 

Buster

[memom]

We had a good experience with the month of steroids and taper for our daughter but the effect was gone soon after stopping the meds. She got to 75% with the steroids, now has backslid to 50%.

[thereishope]

With us, the steroid stopped the spiralling down, helped him plateau, then jump started recovery. He was only on a 5 days of steroids. However, it still took 2 months in that exacerbation for him to get back to completely himself. I did not see him backslide post steroids. I think the 2 months recovery is still short compared to his 3rd exacerbation w/ no streoid that took 5 months to get better. btw...the episode in which the steroid was used was also way worse symptoms than the one w/o a steroid.

 

So, I have learned with my son's case, that a steroid is very beneficial and that I will beg for steroid if he ever gets sick again. For us, it should part of treatment.

 

I knew he could tolerate short term steroids prior to use since he received one months before for croup.

[dut]

Hello

 

Our dd had been doing really well for 7 months or so with no symptoms on abx proph alone. We had a flu-like illness and the PANDAS started to show. We did full course abx with no improvement. We did a 5 day steroid burst and within 1 day the symptoms had almost disappeared. By the end of the burst she was symptom free and still is, at 9 days post burst. We spoke to Dr T on the phone and he said if symptoms came back we could repeat the burst in a month or so, still doing a short burst but also adding a short taper. I believe he called it a medroll pack. It would seem that abx and bursts can indeed work for some children and that in his opinion a few short steroid bursts over the year are ok (assuming your child reacts ok to the steroids).

[Kayanne]

We also had great results with a two week course, two week taper, and and add'l two weeks at the low taper dose...at the end of week four, she improved dramatically, so I do believe the steroids helped to accerlate her healing.

 

Right now, not seeing any PANDAS symptoms, and she has been that way since beginning of Sept....after the pred she still had a few VERY minor issues that did resolve themselves.

 

I would definatedly use the prednisone again to prevent a PANDAS episode from getting worse, and to shorten recovery time.

 

Hope this helps

 

~Karen