Downslide after steriods?

[lmkmip67]

We just finished up out steroid burst, 16 days I think it was, from Dr. B. Ian is still on the Zith. too, of course. But the moods have worsened and we have had more tantrums and rages again after the steroid was stopped. Is this normal? I was so hopeful for a while but have been nervous having seen this backslide. Is it temporary? I need some hope..

 

Lisa

[dcmom]

We have seen three things with steroids (I have two pandas kids):

 

quick and maintained improvement

 

improvement, followed by minor backslide post burst, which levels off to maintained improvement

 

improvement (sometimes only mild) which we could not maintain post burst

 

Totally frustrating- hang in there- I would ask about trying a second burst.

[kimballot]

We had much improvement with steroids, but the improvement quickly faded when steroids ended. In our case it was because my son still had an active infection. Once the infection as cleared he did better, and has only minor problems now. We are moving toward IVIG as some say that reactions seen on steroids are similar to what would be seen with IVIG. I've not seen any postings about that recently. Perhaps some others could comment on that as well.

[peglem]

If there is infection during the burst- the burst can actually strengthen the infection because it suppresses the immune response. So you get relief from the autoantibody production during the burst, but comes back stronger after.

[lmkmip67]

Well, I would doubt infection coming on stronger since he is on the antibiotic for 30 days, still has more doses until we go back to see Dr. B. Unless the antibiotics don't help. This disorder is so frustrating too because it seems there is no "norm." Nothing to really count on and no set rules on how kids react and such. I just wish I knew what to expect.

[kimballot]

When do you go back to Dr. B? If it is more than a week away, you might want to call him as he may want to change antibiotics. We did a few changes before we found the right one.

[lmkmip67]

Maybe. I don't know. I kind of assumed since we were seeing one of the top docs in this that he would pick the right antibiotic from the get go as it sounds like he treats all his patients with Zithromax. But I am still learning and nothing is cut and dried with this disorder it seems. I am charting and taking notes of such things so maybe he can give us some answers next week. I am kind of heartbroken that he got worse again. It was SO nice and he was so much happier. But you can't take steroids forever either.

[kimballot]

I have to warn you that I tend to be a "glass half-full" kind of person, so I am not, in any way, trying to minimize the disappointment you are feeling. It is completely understandable. However, we've been dealing with PANDAS for 13 years, though we've only been dealing with PANDAS experts for 8 months. The progress we've made in 8 months is exponentially larger than the trial and error guessing we did for 13 years. Unfortunately, every child with PANDAS is unique. We all have unique stories that brought us to this forum and unique immune challenges that sent our kids over the edge. Thankfully, PANDAS docs don't give up (at least not as far as I have heard). They take their best educated guess based on the test results and the clinical picture and prescribe medication. Then they look at the results of that medication and decide what direction to head next. It is NOT one size fits all by any means!

 

The fact that your child did well with steroids will give Dr. B a huge amount of information. The fact that he backslid afterward is disheartening, but it is another piece of information to help you get to the bottom of this. You will get there. Azith is great for many kids. Some need biaxin, some augmentin, some omnicef... it all depends on the underlying infection and your child's body. From March of 2010 to July of 2010 my son went from biaxin to omnicef to augmentin to azith back to omnicef back to azith. We changed based on his responses and also his ability to tolerate meds as his stomach could not even tolerate biaxin and zith when he was in exacerbation. Along the way he ended up needing sinus surgery because that is where his infection was hiding. Then we had to change antibiotics again because was exposed to mycoplasma and had a sudden fever of 104 and rise in OCD symptoms. We have been on Azith since july and it seems to be working, but I know he can't stay on it forever.

 

Since my son did do well on steroids and he has evidence of autoimmune processes and immune deficiency, we are heading toward IVIG. I am hoping that will help him with the small glitches we continue to see and that we can safely reduce his antibiotics. I don't know for sure what will happen - that is my hope.

 

I want to give you encouragement to know that things will turn around if your stay the course. It is a long and winding course. Often times you move backwards for a few steps before moving forward, but those backward steps give you information that allow you to move ahead more confidently. Work with your doc and keep him/her abreast of any significant changes so they can make adjustments as needed.

 

If you are dealing with rages / tantrums and such, you may want to try a couple of days of ibuprofen (have you tried that yet?). There are also supplements that many use like valerian root, 5htp, melatoin, and even peanut butter. If you search those you will find threads on each of them. I think the supplements have helped us to maintain a sleep schedule and have smoothed out the rough edges with exacerbations.

 

You may also find the information in Pamela Varaday's article on PANDAS Resource Network helpful at http://www.pandasresourcenetwork.org/about-pandas/patient-information.html Page down until you find it. I found it helped me to understand my family functioning (or dysfunctioning) better.

 

Best wishes -

Edited October 24, 2010 by kimballot

[formedbrds]

I

Edited October 30, 2010 by formedbrds

[amyjoy]

my DS14 had great improvement in tics and mood with burst until around day 18 or 20 when tics came back. i'm not sure they were worse at first or just felt worse, after not having symptoms for a couple of weeks everything was ridiculously normal at home and then...the tics came back. We started an antiinflammatory neuro protocol of supplements i do believe help since this time, using something called Avipaxin by neuroscience, a humongous amt of omega 3, inflammaway by natura, and glutathione/methylation support, and lots of minerals. it does seem to be helping, while we are working on the $$ for ivig.

[Kayanne]

It is still possible to have an active infection after 30 days of zithromax. Some antibiotics are not effective against some bacteria. Did your son have tests to try to determine what the underlying infection is?

 

An active infection could be one reason for backsliding--still have strep, mycop, or lyme.

 

Also, another possibility could be that the prednisone was just not enough to halt the autoimmunity or "reset" the immune system--indicating either more pred or moving onto the bigger gun treatments.

 

My daughter has seen excellent and lasting results twice with prednisone. Each time, I am sure the infection was cleared, and we knew we were dealing only with strep...

 

Definitely let Dr. B know what is going on.

 

Good Luck.

[lmkmip67]

Dr. B did his battery of tests so I am sure he will tell us if there is anything as I think his tests are pretty thorough. The last couple of days he seems a bit better, so maybe it is just adjustment off the steroids. He also caught a cold from his sister, so that couple play a part, I suppose. The tics are still gone as far as I can tell.