New here - steroid burst question

[jennapow]

Hi there,

 

I took my DS (9) to Dr. Kovacevic last week for a PANDAS consult. He prescribed the 5 day steroid burst with instructions to watch his behavior for 14 days after the steroid burst and email the results. After reading some of the other posts about negative reactions to the steroid burst I am scared to death to actually give it to him!

 

Here's our history: reflux, colic as an infant, but generally normal development as a toddler. Precocious and very verbal at home. At age 3 1/2 had an infected preauricular cyst (developed cellulitis on a spot just in front of his ear). Required a double course of augmentin to clear it up. Started having behavioral issues at school. 4 months later - same deal. Infection and double course of abx. 1 month later (age 4) had surgery to remove the cyst. Cyst became infected again after surgery = more abx.. Pus was cultured and found to be strep. Other than that DS has never tested positive for strep. After this time he developed certain OCD behaviors - obsession with the color green, only washing his hand with certain soaps, etc, difficulty with transitions, sensitivity to noise... Transferred to special Ed preschool. Starting in first grade we noticed episodic tics - eye blinking, foot stomping, grunting. They would last for a couple of months and disappear. A year ago in the late summer the tics became SEVERE - constant noises, banging fists, jerking head. Also had emotional difficulties, frequent meltdowns, OCD behaviors, urinary incontinence. We were seeing a DAN doc at the time who ran a bunch of tests. Strep titers were low. Also tested for EBV, CMV, toxoplasmosis - all negative. hHV-6 titers were high. We treated with 5 months of valtrex. The tics gradually subsided, but who knows why. Was it the valtrex or just the normal waning of symptoms? Fast forward to this year - both kids got a viral infection the last week of September. Fever, sore throat, croup. Again no strep. But DS tanks. Mood is horrible - everything makes him upset and anxious. Can't go to sleep on his own. OCD kicks in (this time obsessive need to smell everything). Verbal tics return. Explosive rages - hitting, kicking. Can't/won't get work done at school.

 

I was hoping someone could give me more information about the steroid burst. The way Dr K explained it, it is a test to see if there is an autoimmune component to what is going on with him. Basically he said if we see noticeable/unmistakeable change post burst, it is 90% likely he has PANDAS, and we would go from there as far as treetment. We gave him all our lab results from last year and he said he didn't need to run any other tests right now.

 

I had the prescription for the steroid filled but I am reluctant to give it. I don't want to give it to him before school without knowing how it will affect him. I am afraid of a negative reaction. Let's say I give it and he does have a bad reaction. Anything I can do to calm him down? Should I keep giving the rest of the doses (5 days total)?

 

Thank you in advance for your wisdom!

Jenna

[mdmom]

We have done 2 steroid bursts during PANDAS exacerbations. My son did get worse during the treatment, but 2 weeks after he finished the course of steroids, he was a calm, almost typical child. He kept reporting, "my brain feels so clear and my OCD is gone." It was the proof we seemed to need that he has PANDAS.

 

My son has a very similar history to yours. Docs have described PANDAS treatments as "peeling back the layers," like an onion. You've got to peel all the layers to get to the good stuff. Your son may experience symptoms he had previously while on steroids. So yes, it might be a bumpy ride and I wouldn't recommend sending him to school during the treatment.

 

My son looked like he wanted to climb the walls while he was on steroids. If he could have unzipped his own skin and climbed out of himself, he would have done so.

 

But the reward of him feeling good was worth it.

Edited December 3, 2012 by mdmom

[Kathy4Him]

Please don't wait. I too was given a steroid burst for my son in 2009. This was 3 yrs before I knew about this forum. I never gave it to my son because I was afraid of the side effects. He is now beginning his 4th week of tapering from 60 mg prednisone to 40 to 20 to 10 today. Yes I was worried when we started but trusted our Dr. knew what he was doing. First week was fine, 2nd week saw increased anxiety, but the good news is it is helping. In retrospect, I wish I had tried the steroid burst in 2009.

 

His anxiety began to slow up last week.

[michiganpandas]

everyone is different....i am very afraid to try ANY kind of drug/medicine...and unfortunately it's why i'm here...i didn't treat quick enough with antibiotics and my daughter has suffered so much....so very much.

We have been into this for 1 1/12 years now....and so far the 5 day steroid burst that I gave my daughter in the beginning of Oct. this year was the best of anything we have tried.....she was BAD...REALLY BAD before the burst so I caved to try it and glad I did....she attended school during the 5 days and I emailed her teachers to warn them to watch for anything out of the normal of her normal anxiety/PANDAS symptoms. During the week she had 2 flight/flight rages (but, we also had those before prior to the steroids the week before which is why we started them).

Anyways, 3 days after the burst stopped were THE BEST DAYS since this started...she was 100% back to her pre-panda self for a few days..I LOVED IT!!!!! It has now been 2 months since the burst and she has only had a few down moments and is so much better....but, I can tell it's not going to last (but, still worth it!)....her anxiety decreased, tics were gone, and ocd was SO much better. Again, it's not perfect, but better, and at least I have an idea that ivig might work.

[cobbiemommy]

I was reluctant to do the steroid burst for my son because things were sooo bad, I did not want to make them any worse. But we got our courage together and did it. The results were amazing. I checked with friends who knew us well to make sure that I was not seeing what I wanted to see. They gave very helpful insight.

 

Here's the downside, while steroid responsive means the condition is autoimmune, it does not mean 100 percent that the condition is PANDAS and that IVIg will ease all the symptoms. We are still looking for that missing piece of the puzzle.

 

DS has had three steroid bursts about a year apart and they have always brought back my happy, funny, energetic child. This gives me hope to press on.

 

You might look up steroid responsive encephalopathy and see the connections to thyroid. It is called Hashimoto's Encephalopathy. A very rare condition, but one that looks a lot like PANDAs symptomatically.

 

Cobbie

[T_Mom]

I can share that I was most likely the most scared mom you might meet, re: steroid bursts.

 

Having battled PANS episodes in two daughters now -- over the past four years, I only wish I had listened to Dr. K earlier!

 

I believe his words were, 'It is a no-brainer' and something like, "if your child is like this in 20 years will she be OK??...(rough quotes, but you get the picture!)

 

You will not know until you try.

The road post-steroids can be ROUGH for a relatively short amount of time at first, and then, then if PANS is the issue, you will see results that can make your child normal again. --at least for a time. Dr. K uses it as a "test" to see if a child might then be responsive to IVIG, other doctors use it as a treatment.

 

Good luck, and again, you won't know if it can free your child until you try. For us it was a relatively benign treatment with great potential to restore normal childhood.

 

During one terrible episode with my older d, a neurologist said to me, (as my d crawled around the floor of the office lobby), "you cannot leave her like this!" Thank God we did it.

Edited December 5, 2012 by T.Mom

[mommybee]

I think you're right to be cautious, Jenna. My 16 year old had a terrible reaction to steroids and had to go off of it. Steroids reduce imflammation, but they also depress the immune system. In our case, the prednisone brought out Lyme symptoms that had been pretty much eliminated by months of abx therapy. It was horrible and very disappointing. My advice: if you think your son might have a vector-borne illness, stay away from steroids.

[jennapow]

Thank you for all of the replies! We decided we have to at least try this and see what happens. He seems to be getting past the flare, but we are still seeing behaviors. The pervasive negative mood seems to have past but we are still seeing rages, OCD behavior and work refusal at school. We just gave the first steroid dose this morning. Wish us luck! Do you have any suggestions on what to do if we do see a negative reaction? Would Epsom salt baths or charcoal be helpful at all? What about ibuprofen? Thanks again!

[michiganpandas]

we didn't do anything with the steroids except antibiotics....we do also do epsom baths, but we always a few times a weeek so we probably did then, too

[T_Mom]

Thank you for all of the replies! We decided we have to at least try this and see what happens. He seems to be getting past the flare, but we are still seeing behaviors. The pervasive negative mood seems to have past but we are still seeing rages, OCD behavior and work refusal at school. We just gave the first steroid dose this morning. Wish us luck! Do you have any suggestions on what to do if we do see a negative reaction? Would Epsom salt baths or charcoal be helpful at all? What about ibuprofen? Thanks again!

 

 

Hi Jenna,

thinking about you and wondering how it is going with the steroids?

[kleek3]

Jenna,

 

I too am wondering how you made out with the Steroids as we are thinking about doing a burst too.

 

 

KK