Steroid burst question

[FallingApart]

Hello everyone,

 

After nearly 7 months of absolute ######, we started to see the smallest signs of improvement in our dd last week on Monday night. Per Dr. K's request, we had moved to Erythromyacin and after 4 days on that drug, we finally saw little blips of improvement. (Prior to that, we had already tried two other abx, with no change). Throughtout the rest of the week, we continued to see areas of improvement. After going down for so long, these small improvements were miraculous to us and added up to a big change! On Thurs, of last week, we had our MRI and all looked good. So, Thursday night we started our steroid burst. Throughout the weekend and until now we have continued to improve and at this point there is no denying that a big change has taken place in our child.

 

Whether it is the abx or the steroids, can someone tell me how this works. From what I have read on here, this seems like it is likely to be temporary? Is that true? Will we regress once we go off the steroids? (Today is our last day). How long will the steroid burst's effects last for us? Any words of wisdom you want to share? Is IVIG a forgone conclusion?

 

Thanks so much!

[P_Mom]

Hi...glad to hear things have improved for you.

 

Whether it be the antibiotics or the steroids, they both help by reducing inflammation/modulating the immune response.

It is extremely likely to be temporary, only to rear its ugly head agin whenever an illness comes along...or even allergies. Being the summer, the steroid burst may last longer because exposure to illness is limited this time of year....however, no one can predict how long the benefits will last for your child. You may see symptoms creep back soon after stopping the burst, or, the benefit can last a couple of months....especially if she remains on the antibiotics. Unfortunately, that is how PANDAS is....you can't give a definite answer to anyone about how these treatments will effect your child....these kids all respond differently.

 

We also started a steroid burst on my son as of the a.m. We are scheduled for IVIG soon, and we wanted to see if he will improve on the burst. If he does, I will have no hesitation to do IVIG.....his symptoms, although not severe, have slowly (after sudden. severe onset due to strep) evolved into a more constant state with waxes and wanes...illness related. However, even in a wane, he still holds on to minor symptoms.....anxiety, mild tics, compulsions. etc.

We of course, are hoping to see improvement on the burst.

[FallingApart]

Thanks for your response, PMom. It is interesting to hear you say that he holds on to anxiety even in the best of times. I am seeing that right now too. The benefit we are seeing (whether from the abx or steroids) are having no effect on the anxiety.

 

Is it your expectation that the IVIG will help with the anxiety?

 

Would you go ahead and do the IVIG proactively even if your child were better temporarily on the steroid or abx?

 

Thanks!

[momtotaylor]

From what I understand from Dr. K, I don't think there is really a "time" in which the steroid burst will last. I believe that every child is different. Improvement could last for weeks or for months. If there is a positive reaction to the steroid burst along with all of the other pandas characteristics then, from what I understand, IVIG is definitely an option.

 

I know that there are many other parents on the board who are more knowledgable in this area, but that is my understanding.

 

I am glad to hear that there has been improvement with your dd!

 

Jen

[P_Mom]

Falling Apart, (good screen name...I know how you feel)

 

The anxiety is the one symptom that dr.K said these kids tend to hold on to, even in the absence of all other symptoms.

It is so true with us.....my son was just about 100% last summer, however, he always held on to anxiety issues, surely not near as severe in the acute episode.

 

I asked dr.K specifically that exact question you asked..."Will the IVIG take care of the anxiety?" I asked this because the anxiety is probably the most bothersome symptom to my son...and me. I hate to see a child with anxiety. He explains it as a "funny feeling in his stomach"...he can't explain it. He still, to this day, will hug me and tell me he loves me over and over whenever I leave the house. He never did this pre PANDAS. Also, at night, he wants me to lie down with him all the time.

Anyway, dr.K siad that YES, the IVIG should make the anxiety remit. If it wasn't expected to improve anxiety, I would be hesitant to use it at this point. I wonder if this steroid burst will improve the anxiety for my son.?

 

At this point, for us, yes. I am going to go ahead with the IVIG even if my son improves on the burst...or even if he took a different antibiotic that gave him improvement. After years of this, I have seen my son improve many times only to deteriorate again, and again...each time his symptoms seem to linger longer and longer. He is only 6, so, I know he would have many years of this......and like I said, it seems to be slowly progressing, I feel like, for the best chance at recovery, it is now or never.

 

Kelly

[Kayanne]

But what confuses me...isn't IVIG and Plasma Exchange just as temporary as a steroid...if your defination of temporary is that a relapse will occur with another strep infection?

 

Or is the "steroid burst" only temporary? My daughter has been on a steroid since June 5th, and is about 99% recovered...I was told that she will be fine unless she gets sick again.

 

Aren't all of these treatments just to get out children back to their "baseline."

 

Doesn't a proph antibiotic seem to be the best long term course, after our kids have recovered. My unlce had RF, and he was on peniciillian for 20 years.

 

I'm confused because it seems that IVIG is thought of as a "cure", and I just thought it was a treatment.

[P_Mom]

That is the million dollar question...does IVIG indeed result in a lasting recovery? It seems to be....sometimes it does, sometimes it doesn't. I do know of one child who has not had a relapse since IVIG despite illness...and two who have also been fine despite illness since PEX. It seems like many people I speak to do however see a reoccurance after these procedures with illness (strep mainly), but, that the reoccurances are not as bad and more easily controlled. Perhaps it depends on how long and "set" the illness is in these children who need repeat trreatments. I don't know...wish I did.

 

I do know for sure the steroid burst is only temporary....at some point your child obviously will get sick again. There is nothing we can do to avoid exposure to illness entirely.

 

Yes, I do believe the goal is to get these kids back to baseline, and then the best thing you can do to keep them there is avoid strep with antibiotics. But, how can we avoid viral illness? This will bring about mild symptoms. I have heard conflicting reports.....I have heard the IVIG can actually reverse or alter the immune response permanently.

 

I guess at this point we, or the medical community, can't say for sure how the IVIG works....for some, it may be a "cure", and for others, just a treatment. However, if you can't get your child back to baseline with antibiotics or steroids...it seems like the IVIG or PEX can do that.

[FallingApart]

We are seeing our ped on Friday for our weekly appt and I have a call into her about proactive IVIG. I'm hoping to get several thoughts on this before then so that I can present this to her. Like many of you, we have had to basically drop out of life over the last 7 months and today my dd asked me if we oculd go to soccer class again. I want this child back and I will try my hardest to make it happen. I so appreciate your input!!

[michele]

We are planning to see Dr. latimer next Thurs and after six and a half years are ready to be done with this. Like Kelly said our sons baseline is always having the anxiety and OCD but gets worse after any fever and illness. However, from those I have talked to these symptoms seem to follow them into early adulthood. My poor son had to start this at age 1. I know of a girl who was better for many years because of steroids long term. Pulse cortico steroids. She did IVIG and it didn't last. However Mom MD researched and felt Plasma replacement was the only true longterm treatment. However after a recent sinus infection the girls symptoms did return after 9 years. So until more research is completed and published we are just guessing at what might work the best.

 

We are seeing our ped on Friday for our weekly appt and I have a call into her about proactive IVIG. I'm hoping to get several thoughts on this before then so that I can present this to her. Like many of you, we have had to basically drop out of life over the last 7 months and today my dd asked me if we oculd go to soccer class again. I want this child back and I will try my hardest to make it happen. I so appreciate your input!!

[thereishope]

Hello everyone,

 

After nearly 7 months of absolute ######, we started to see the smallest signs of improvement in our dd last week on Monday night. Per Dr. K's request, we had moved to Erythromyacin and after 4 days on that drug, we finally saw little blips of improvement. (Prior to that, we had already tried two other abx, with no change). Throughtout the rest of the week, we continued to see areas of improvement. After going down for so long, these small improvements were miraculous to us and added up to a big change! On Thurs, of last week, we had our MRI and all looked good. So, Thursday night we started our steroid burst. Throughout the weekend and until now we have continued to improve and at this point there is no denying that a big change has taken place in our child.

 

Whether it is the abx or the steroids, can someone tell me how this works. From what I have read on here, this seems like it is likely to be temporary? Is that true? Will we regress once we go off the steroids? (Today is our last day). How long will the steroid burst's effects last for us? Any words of wisdom you want to share? Is IVIG a forgone conclusion?

 

Thanks so much!

 

For my son, he finally had some improvement once he was on a steroid for a few days. Prior, he was spiralling downward even after being on antibiotics for a few days for a + strep infection. After he went off the steroid, he remained plateaued for a bit, hmm...maybe he backslid a little, but no where to the point of pre-steroid. After awhile, he continued to improve and eventually went back to baseline. That whole timeline took about 3 months. But then he got strep again and the vicous cycle began again. But that's a separate story.

[bronxmom2]

Hmmm... so I guess I have the same question, why wouldn't steroids plus prophylactic abs work as well as "permanently" as IVIG?

[dcmom]

We are seeing dd's neurologist early Aug, and considering doing a steroid burst.

 

I have the same question. I know steroids have issues, but would it be safe and reasonable to use proph antibiotics to prevent infections. Then, assuming (maybe this is naive) that the child averages one flare of symptoms that doesn't remit with antibiotics- treat with steroids.

 

How often is it safe to use steroids? ( I have yet to research this)

[thereishope]

We are seeing dd's neurologist early Aug, and considering doing a steroid burst.

 

I have the same question. I know steroids have issues, but would it be safe and reasonable to use proph antibiotics to prevent infections. Then, assuming (maybe this is naive) that the child averages one flare of symptoms that doesn't remit with antibiotics- treat with steroids.

 

How often is it safe to use steroids? ( I have yet to research this)

 

I don't know if this helps with your question, but my son's first PANDAS episode was only treated w/ antibiotics. And that was only a 10 day dose for strep. He didn't even begin antibiotics until he had strep for about 3 weeks.He doesn't get symptoms of strep.No proph. antibiotics. Then the second time he got strep and PANDAS resurfaced is when he did a 10 day amox for the strep and a steroid. He eventually went back to baseline. But baseline occured while not being on steroids. The script was for only 5 days.

 

However, the time he got strep and PANDAS resurfaced, the symtpoms were never as bad as the first two times, but he has residual OCD.

 

This is just such a confusing disorder. There's no rhyme or reason.

[P_Mom]

Well, just from my understanding.....

 

the IVIG is supposed to change the immune response somehow...like alter it. I have heard it being referred to as "re-booting" the immune system.

 

The steroids and antibiotics only reduce inflammation and supress it.

 

 

Good point Vickie....there really is no rhyme or reason.

[T_Mom]

Just to add--our experience during the worst episode our d had a very sudden and obvious reaction and literally an about -face in symptoms 10 days after the steroid burst had ended.

 

Dr K had told us that in an older child it could take up to a few weeks to see a change. He also said that if it was PANDAS the change in behavior would be sudden and obvious, which it clearly was.

 

Her truly amazing recovery was like a total break-through at the time--she was not 100%, but she literally "woke up" from OCD. This was 10 days after the steroid burst and after 5 days of full-strength Amoxicillan.