Help

[Kayanne]

By the end of the month of steroids, I was so weepy. My daughter still couldn't get out an organized thought, still couldn't answer yes or no...and then BAM...overnight results with only three doses left.

 

She went from 70% to 98% in three days after that...that is when Dr. L allowed us to continue for two more weeks at 5mg daily.

 

She was essentially 100% by the end...and a few weeks later, we were certain that we were seeing no PANDAS behaviors.....this was her first recognizable episode, so she may have had great results because of that.

 

Good luck

Karen

[Debbie1]

Eileen & Bronxmom:

 

Wow, that is great news from both of you! I hope the procedures go smoothly and successfully. Please keep us posted.

 

I left a message for Dr. Latimer this morning and am waiting for a call back. Thank you to everyone who has expressed concern for my daughter. I am so grateful for this forum.

 

Debbie

[dcmom]

my daughter is ocd and mild chorea, not tics. that is strange- she didn't really even suggest ivig to us?? Are you coming to Gtown- or did she find someone local for you?

[EAMom]

I'm don't know, I have wondered a bit, I see that she orders PEX a lot of the time but it wasn't even mentioned for us. I didn't question it because based on what I've read here I think IVIG is the right thing for him too... his issues are mainly behavioral, OCD not tics, emotional volatility, etc... though she did find some chorea-- maybe she thinks that PEX is better for ticcy kids, IVIG for OCD kids?

Good luck with the PEX!!!!

I too am bracing for setbacks.

 

Yeah...I'm curious too as to why she is choosing IVIG for your son when she has gone with PEX (or plasmapheresis or whatever it is called!) for the others. Let us know if you gain any other insights on that.

[faith]

Am I getting it correctly that this steroid burst is supposed to hopefully improve symptoms dramatically? And for those that have experienced setback, then you move to IVIG or PEX? Is the steroids for releif or just a trial to see how they react, and if positive then you know you are a candidate for IVIG.

 

 

thanks

Faith

[peglem]

I'm don't know, I have wondered a bit, I see that she orders PEX a lot of the time but it wasn't even mentioned for us. I didn't question it because based on what I've read here I think IVIG is the right thing for him too... his issues are mainly behavioral, OCD not tics, emotional volatility, etc... though she did find some chorea-- maybe she thinks that PEX is better for ticcy kids, IVIG for OCD kids?

Good luck with the PEX!!!!

I too am bracing for setbacks.

 

Yeah...I'm curious too as to why she is choosing IVIG for your son when she has gone with PEX (or plasmapheresis or whatever it is called!) for the others. Let us know if you gain any other insights on that.

 

When she spoke to my daughter's pediatrician on the phone, she recommended PEX, but IVIG if you can't get that....Is it related to age (my daughter is a teen) and/or length of illness and/or severity of symptoms? Or could be related to Cunningham results?

[Kayanne]

Am I getting it correctly that this steroid burst is supposed to hopefully improve symptoms dramatically? And for those that have experienced setback, then you move to IVIG or PEX? Is the steroids for releif or just a trial to see how they react, and if positive then you know you are a candidate for IVIG.

 

 

thanks

Faith

 

In our case Dr. Latimer prescribed the month long course of prednisone as a treatment to bring her back to her baseline...it was used to suppress the immune response and to address the inflammation in the Basal Ganglia.

 

Dr K. uses a 5 day burst only as a diagnostic to determine if a PANDAS child will have a good result with IVIG.

 

One thing that she kept stressing to us about IVIG or Plasmapheresis is, "your daughter is not there yet."

 

This was her first recognizable episode.

[P_Mom]

Kayanne....since the burst and your daughters improvement (great!)...has she had any kind of illness? If do, did she get PANDAS symptoms? What proph. antribiotic is she on?

 

Thanks!

[Kayanne]

Kayanne....since the burst and your daughters improvement (great!)...has she had any kind of illness? If do, did she get PANDAS symptoms? What proph. antribiotic is she on?

 

Thanks!

 

She was on 100 mg of azith daily from June 6th thru Sept. 10th.

 

She took prednisone from June 6th thru July 18.

 

On Sept. 11th we switched to 200mg of pen vk twice daily...she is still on it.

 

July21...negative rapid and subsequent negative culture...I suspected it was just allergies because her throat was "itchy" being more consistent with her allergy medication helped that. No behavior changes

 

Oct 2...My older daughter had a bad cold, and PANDAS daughter had a milder cold...they were both negative on the rapid. We think we may have noticed more emotional lability, and a slight loss of appetite, but if your not feeling good, anyone would behave that way...so no...we cannot really say that we have seen any PANDAS behaviors with this cold either.

 

When she was in her PANDAS episode, her emotional lability was long bouts of crying, without being able to tell us what was wrong. So if she gets emotional now, I'm okay with it as long as she is able to verbalize exactly why she is upset...and that has been the case since she stopped the pred.

 

I should add that off and on, I was getting complaints from both of my daugher's that their throats were hurting them, I stopped giving them nasonex, and the soreness cleared up.

 

The wierd thing is that in our house, when a cold goes around, my PANDAS daughter always seemed to tolerate it well, or not get it as severe.

 

I'm really hoping that we don't get any flu this year or if we do, it is not too bad. I used to be so confident that my kids were healthy, so I always passed on the flu shots...now I'm not so sure.

 

I don't think we will be doing an immunological workup either.

[P_Mom]

Thanks for that. I am still trying to decide if I should go straight for IVIG or do the 30 day steroid first......Dr. Latimer also told us that our son seems to be doing well and that the reasonable approach right now would be to do the steroids. (he did respond great to a 5 day dose earlier in the summer...but, then, Pertussis ruined that) I just can't get over my nervousness about it because it is cold, flu, and strep season....I don't know if I should mess with his immune system (steroids) right now..?? Any thoughts? Dr. Latimer tried to assure me that a child does not become immune sompromised until they are on steroids long term...and that if he gets sick on the Pred...no big deal.. However, I just can't shake it.

 

Suggestions anyone?? Steroids or IVIG?

 

He is about 90% back to baseline before this all started....functioning well...going to school easily...getting good grades....just mild stuff left.

 

Kelly

[KeithandElizabeth]

Kelly:

 

What a decision to make since it seems that your son has been doing well, but not 100%. Dr. K feels that you will not easily get to 100% with antibiotics alone. I did feel that IVIG as an outpatient procedure was relatively easy. Our son just watched some movies and then we went home. We did not have the side effects, except for a headache during the night. What does Dr. Latimer say about PEX for your son? I am still confused as to when she recommends IVIG versus when she recommends PEX.

 

Elizabeth

[P_Mom]

Thanks! She has never mentioned PEX to us...just IVIG....not sure why? Could it depend on severity of symptoms? I don't know. Yes, it is difficult.... he is almost there...just not quite...it has been like this since onset in 2007....holding steady...but....I don't know. I have a follow up with an immunologist this coming Thursday....if she is willing to do IVIG for him...I think I'll just go for that....if not....then I guess I will have to go with Latimer's suggestion and try the steroids....unless I call her and request IVIG...??? Yikes!

 

Thank you!

 

Kelly