Steroid Diagnostics... what happens afterward if PANDAS

[pixiesmommy]

We had 5 days of steroids with Dr K. We were to observe for 14 days (including the 5 of steroids) and report back.

 

We had a complete turn-around. She was being creative, she was communicative. We could grocery shop. She would shower....

 

Then day 13... slightly bad. But not the worst.

 

Then day 14.... she is at the ER right now with my husband. We literally SAT on her to restrain her all day. She threw her shoes at my husband's head when he let go of her for a moment in the ER waiting room. She kicked the hospital staff. They are calling to consult with Dr K to see if they can sedate her for the night, because DH went AMA and refused to admit/transfer her to the psych unit at another hospital. Luckily the dr they are dealing with said he also thinks it is steroid withdrawl, but has no idea what PANDAS is, of course, and won't do a thing without Dr K ordering it directly.

[peglem]

So, if the dr. thinks it is steroid withdrawal, why doesn't he try steroids to see if it helps. Good for your husband for not admitting to psych unit!

[Suzan]

I don't know but wanted to give you my support. Thinking of you guys and I hope it all calms down quickly.

 

Susan

[FallingApart]

If she is a PANDAS kid, will a sedative work? We tried sedatives with my 3 yo PANDAS DD and it had the opposite effect. I can't remember the name of the drug because we threw them out, but there were 2 prescriptions from our ped that were meant to be sedatives.

[KeithandElizabeth]

So sorry you are going through this right now. How stressful. The good news, to me, is that it sounds like the steroids were a success!! This means that IVIG will be a good option for you. We go in tomorrow for IVIG and we are also waiting to hear from Dr. K right now to give our doctor an antibiotic dosage.

 

I think Dr. K is flying back from vacation. I know he is supposed to be in the hospital tomorrow.

 

elizabeth

[colleenrn]

Pixiesmommy,

 

I cannot at the moment remember how old your daughter is, or her "story",and my computer is being very slow and will not let me read your previous posts, BUT I would say, given her current state, I would "lightly" sedate her. I am thinking she is under 50# (if I remember her story), so given that, IF she were my child I would let her have Benadryl (dyphenhydramine) 50mg max. I have given Benadryl to all of my 4 PANDAS children and it has never had a negative effect on them. 50 mg of Benadryl should knock her out, but safely do so.

 

I would most definitely also contact, via email or emergency call, Dr. K or ANY PANDAS physician who prescribed steroids to her and ask their opinion. Is she is currently on antibiotics at a treatment dose? If so,I would be highly suspicious that it is strep and treat it aggresssively, with IV antibiotics if needed.

 

I completely understand your husband's reluctance to hospitalize her in psych. I do not think that would be beneficial. I would keep her where she is and deal with it from there. If you go to psych, they may push for psychiatric meds, which may make things worse.

 

Hang in there!!

 

Colleen

[EAMom]

Wow! hang in there.

 

Everyone has already given good advice so I won't add much. Hugs!

[thereishope]

She was steroids for only 5 days? I admit I'm surprised she'd have withdrawl from only 5 days. But then PANDAS and surprised go hand and hand. Have they ruled out that she may have an infection? I've had too many "are you serious" coincidences in dealing with this disorder. My son had a huge setback including animalistic rage when his allergies kicked in. Dye free Benadryl stablized his allergies and the setback. He was only tired for the first day taking it. If they rule out steroid withdrawl, know there is probably another reason. I remember feeling extremely confused and lost when that happened.

[Kayanne]

I'm surprised about the steroid withdrawl too because it happened 9 nine days after the last dose....however, I'm not qualified to even make such a judgement on that.

 

What I've read about steroid withdrawl is that it is more likely to happen with higher doses for a shorter time or for smaller doses over a longer time period...but I couldn't find anything about how long after the last dose you might see the symptoms of it.

 

But do you think it is just her slipping back into PANDAS behavior...from what I understand about Dr. K's protocol...a slip back is expected because he is only using the steroid as a diagnostic tool, not a treatment?

 

So many things can exercerbate a child's behavior like Vickie wrote...you seem to doing the best that you can as parents to advocate for your dd...I hope you are soon out of this crisis

 

She was steroids for only 5 days? I admit I'm surprised she'd have withdrawl from only 5 days. But then PANDAS and surprised go hand and hand. Have they ruled out that she may have an infection? I've had too many "are you serious" coincidences in dealing with this disorder. My son had a huge setback including animalistic rage when his allergies kicked in. Dye free Benadryl stablized his allergies and the setback. He was only tired for the first day taking it. If they rule out steroid withdrawl, know there is probably another reason. I remember feeling extremely confused and lost when that happened.

[bronxmom2]

pixiesmommy... what's happening? Are you guys OK?

[mom md]

One of the issues with PANDAS is the process causes an increase in brain dopamine levels. If you are looking for something to sedate her with I would use Haoperidol or seroquel which antagonizes the dopamine D2 receptors. Seroquel can be given orally and is something she could take until you can follow-up with her doctor. Hang in there. We are all thinking of you.