Steriod burst to ABX~~HUGE MISTAKE?

[PANDASmcnuggetsw/fry/coke]

I just posted our intro earlier today and then in searching the forums realized I may in trying to be aggressive in treatment made a collossal mistake. We just finished the 5 day steriod burst yesterday per Dr ks instructions and I wanted to try the ABX before going straight to IVIG after the day 6-21 observation period. So....I got our local pediatrician to give us the high dose Augmentin. She started TONIGHT, day 6, during the observation period after taking the 5 day burst which ended yesterday.

 

The pediatrician, knowing I was not exactly following Dr. k, said how will you tell what made her better the steriod or the ABX? And I said, does it matter? I just want my daughter better.

 

Well now I am thinking that IF things get better, then worse again after the 5 day burst plus immediate abx, how will Dr k know if she is a candidate for ivig anymore? If it was the abx that made her better temporarily then he can't conclude it was the steriod. DID I JUST ROYALLY BLOW IT?

 

I have only given her one bedtime dose of 2,000 mg augmentim before bed tonight. (she was prescribed 4000 mg per day)Should I stop this and wait out the observation period of day 7-21 now and document her mostly on the post steriod burst? OR Should I go for broke and see if this can lead to total recovery? She is 12 years old and was diagnosed by Dr k w/ PANDAS last week. Her ASO and ANti DNAse-B were normal.

 

I'll repost my intro from earlier today as I totally forgot to mention that this sudden and extreme onset of syptoms was 4 days after she had a Hepatiitus A vaccine, in anticipation of our new twin sons coming home from Ethiopia. Dr K thinks this was a catlyst for the PANDAS that was lying dormant for years!!!!

 

Thanks for your patience and your help! Intro post below....

PANDASmcnuggets w/fry/coke

 

 

Newbie

 

 

Group: Members

Posts: 2

Joined: 10-July 10

Member No.: 5404

 

 

 

Hi everybody,

 

Thank you for all the wisdom I've been able to glean here as soon as we discoverred this world of PANDAS this May. Last week we received a diagnosis of PANDAS via phone from Dr. K for our 12 yo dd. He is reccomending the ivig and not the abx.

We did not have any positve strep test or blood results at the time of diagnosis. The onset was sudden and extreme in the form of OCD and the classic stuff on Dr. K's site (the frequent urination, terror look etc). Motor tics mostly were limited to gagging on water when she tried to drink. There was an episode 3 years ago, but it was much milder.

 

Today, we just got the blood results and they seem low...<20 ASO and < 70 Anti DNase B. What does this mean, if anything? We do not know when a strep exposure may have occured. Maybe in early childhood? And at the beginning of May, she became very sick with tons of phlegm for days. (She still has some) She had a sore throat then, but we did not test for strep then b/c the WHOLE family was sick, with everything from throwing up to hives, coughs and sore throats~~ and there are 9 of us, with two twin toddlers joining our family at that same time from Ethiopia. (so it was a little busy) :-)

 

Anyway, we just finished the last day of the 5 day steriod burst. She had some very low points during the burst and her face was grey every day. Dr K say day 6-21 are the days to monitor......

 

Today, I convinced a local pediatrician to give us high dose abx, b/c we want to try this before going the ivig route.

I asked for Zith but he did not feel comfortable with that, but he gave her augmentin XR at 4,000 mg a day! She is 115 pounds and 5'5', so I guess this is the adult dose. I wanted long term, b/c she has had the short term, low dosage stuff already with this (amox, zith and augmentim) and that still hasn't knocked this 2 1/2 month phlegm situation out. He gave us 2 weeks only and then we are to check back with him. I'd say he is a PANDAS skeptic, but was at least willing to listen.

 

Ok here are my qs: have any of you gone straight from the prednisone burst to abx and how did that work out for your child?

Is Ivig thought to be a cure or just temporary relief?

I asked Dr. K about this underlying infection she still seems to have..over two months of plegm and he said this could be an allegergic response TO the PANDAS, the immuneological war going on in her body. She could essentially have this phlegm as long as she has PANDAS. Does that make sense to anyone?

 

He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts?

 

Also the pediatrician is checking for lyme, mycoplasma and thyroid which is fine, but wants to do a CAT scan for sinusitus. Is that CAT scan a little over the top?

 

How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)

 

How does Dr. K handle clients "going rogue" and getting their abx elsewhere and then coming back to him?

 

Thank you for bearing with this newbie. This has practically consumed our every waking thought since it began again 2 months ago.

 

Best to you and your children,

 

PANDASmcnuggets w/fry/coke

[JAG10]

Hi there,

 

I think you are in good hands with a great doc.

 

I don't think you blew it. The reason you do the steroid trial is to verify the autoimmunity connection. The steroid temporarily shuts down the immune system, so I think you'll find most kids represented here were on abx while doing the steroid trial or risk majorly exposing their child.

 

In a way, you're right. You are looking for a change, a positive improvement that verifies the symptoms that have improved were aggravated by the immune response just halted by the steroids.

 

I think you are fine. I suppose there is a possibility if your child has a bad reaction to the abx, then you might doubt you "missed" the improvement. Hopefully, everything will go smoothly.

 

best wishes!

[kimballot]

I just posted our intro earlier today and then in searching the forums realized I may in trying to be aggressive in treatment made a collossal mistake. We just finished the 5 day steriod burst yesterday per Dr ks instructions and I wanted to try the ABX before going straight to IVIG after the day 6-21 observation period. So....I got our local pediatrician to give us the high dose Augmentin. She started TONIGHT, day 6, during the observation period after taking the 5 day burst which ended yesterday.

 

The pediatrician, knowing I was not exactly following Dr. k, said how will you tell what made her better the steriod or the ABX? And I said, does it matter? I just want my daughter better.

 

Well now I am thinking that IF things get better, then worse again after the 5 day burst plus immediate abx, how will Dr k know if she is a candidate for ivig anymore? If it was the abx that made her better temporarily then he can't conclude it was the steriod. DID I JUST ROYALLY BLOW IT?

 

I have only given her one bedtime dose of 2,000 mg augmentim before bed tonight. (she was prescribed 4000 mg per day)Should I stop this and wait out the observation period of day 7-21 now and document her mostly on the post steriod burst? OR Should I go for broke and see if this can lead to total recovery? She is 12 years old and was diagnosed by Dr k w/ PANDAS last week. Her ASO and ANti DNAse-B were normal.

 

I'll repost my intro from earlier today as I totally forgot to mention that this sudden and extreme onset of syptoms was 4 days after she had a Hepatiitus A vaccine, in anticipation of our new twin sons coming home from Ethiopia. Dr K thinks this was a catlyst for the PANDAS that was lying dormant for years!!!!

 

Thanks for your patience and your help! Intro post below....

PANDASmcnuggets w/fry/coke

 

 

Newbie

 

 

Group: Members

Posts: 2

Joined: 10-July 10

Member No.: 5404

 

 

 

Hi everybody,

 

Thank you for all the wisdom I've been able to glean here as soon as we discoverred this world of PANDAS this May. Last week we received a diagnosis of PANDAS via phone from Dr. K for our 12 yo dd. He is reccomending the ivig and not the abx.

We did not have any positve strep test or blood results at the time of diagnosis. The onset was sudden and extreme in the form of OCD and the classic stuff on Dr. K's site (the frequent urination, terror look etc). Motor tics mostly were limited to gagging on water when she tried to drink. There was an episode 3 years ago, but it was much milder.

 

Today, we just got the blood results and they seem low...<20 ASO and < 70 Anti DNase B. What does this mean, if anything? We do not know when a strep exposure may have occured. Maybe in early childhood? And at the beginning of May, she became very sick with tons of phlegm for days. (She still has some) She had a sore throat then, but we did not test for strep then b/c the WHOLE family was sick, with everything from throwing up to hives, coughs and sore throats~~ and there are 9 of us, with two twin toddlers joining our family at that same time from Ethiopia. (so it was a little busy) :-)

 

Anyway, we just finished the last day of the 5 day steriod burst. She had some very low points during the burst and her face was grey every day. Dr K say day 6-21 are the days to monitor......

 

Today, I convinced a local pediatrician to give us high dose abx, b/c we want to try this before going the ivig route.

I asked for Zith but he did not feel comfortable with that, but he gave her augmentin XR at 4,000 mg a day! She is 115 pounds and 5'5', so I guess this is the adult dose. I wanted long term, b/c she has had the short term, low dosage stuff already with this (amox, zith and augmentim) and that still hasn't knocked this 2 1/2 month phlegm situation out. He gave us 2 weeks only and then we are to check back with him. I'd say he is a PANDAS skeptic, but was at least willing to listen.

 

Ok here are my qs: have any of you gone straight from the prednisone burst to abx and how did that work out for your child?

Is Ivig thought to be a cure or just temporary relief?

I asked Dr. K about this underlying infection she still seems to have..over two months of plegm and he said this could be an allegergic response TO the PANDAS, the immuneological war going on in her body. She could essentially have this phlegm as long as she has PANDAS. Does that make sense to anyone?

 

He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts?

 

Also the pediatrician is checking for lyme, mycoplasma and thyroid which is fine, but wants to do a CAT scan for sinusitus. Is that CAT scan a little over the top?

 

How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)

 

How does Dr. K handle clients "going rogue" and getting their abx elsewhere and then coming back to him?

 

Thank you for bearing with this newbie. This has practically consumed our every waking thought since it began again 2 months ago.

 

Best to you and your children,

 

PANDASmcnuggets w/fry/coke

 

I think I am reading that you were not comfortable with Dr. Ks recommendation to refrain from ABX for the time being and you asked your pediatrician for an ABX script - and started augmentin tonight.

 

I (along with others) am guessing that your daughter has a sinus infection and augmentin may be just the thing for her - but how will you know if it helps or if it is the prednisone that helps?

 

I am also wondering if you've had any immunological tests run. If she does not have elevated titers she may be immune deficient. A full immune status panel with full s. penumoniae titers will help you to know if she is mounting a response to strep pneumoniae (which is not the same thing as group A strep... but is a frequent cause of sinusitis).

 

Do you have insurance coverage for the IVIG? If you have insurance and your daughter has an immune system problem, your chances of getting IVIG covered are greater. Also, if you can document an active sinus infection, your chances of getting treatments covered is greater.

 

I would try to get her sinuses checked out ASAP for a difinitive diagnosis.

I would also call Dr.K tomorrow to discuss all of this and see if he would be willing to order bloodwork for immune status and I would tell him that you want ABX and you have a prescription for augmentin - Is there a reason he wants you to wait??

 

I know your head is probably spinning right now with all this information, but I, personally, think it is important to be systematic. You want to FIX IT but sometimes it is better to take it one step at a time so you have some answers to help with the next exacerbation.

 

Best of luck with these tough decisions. YOU are the one in the house and YOU know how much your daughter is suffering and YOU will make the best decision in the long run...

Edited July 15, 2010 by kimballot

[peglem]

I think you're doing exactly the right thing, actually. The steroid suppresses the immune system- a positive response indicates autoimmunity, because improvement is seen when antibody production is suppressed. But, at the same time, if there are underlying infections- they can become stronger w/o the immune system mounting a vigorous defense. The abx will help the immune system keep those infections at bay. And yes, I believe most of our kids were on abx at the time of the steroid burst.

[EAMom]

Today, we just got the blood results and they seem low...<20 ASO and < 70 Anti DNase B. What does this mean, if anything?

 

It doesn't actually mean too much. It could be that your dd had an elevated titer in the past, that has since dropped. Or she could be one of those kids that doesn't get a titer rise from a strep infection (my dd had low titers too, despite a positive culture and PANDAS ocd/anorexia symptoms severe enough to require hospitalization at age 7).

 

PANDAS isn't a reaction to ASO and or anti-dnase b. This explains a lot about the titer confusion: http://www.latitudes.org/forums/index.php?...art=#entry29305

 

BTW, I don't think you made a huge mistake. Just keep up the antibiotics now that you have them...and get everyon else in the household throat cultured (do the 72 hour culture if the rapid is neg.)

[thereishope]

I don't think you made a mistake either. If I were you, I would have put her on antibiotics too.

[Fixit]

when i did burst, i started abx at same time...,,,not to scare you but ds started new tics and now i know that yeast is a big concern around here....but day 21,22,23,24 were so good..better than pre burst abx....

i emailed doc k and asked which was it the abx or burst...he said...

it doesn't matter....i'm looking for a response...

than after we had complications from the abx and realized increase in tics was from yeast and the joint pain from fungi..

(quick note we thought for years ds was allergic to penicillian...not...it wiped out everything letting yeast and fungi grow..giving muscle,joint pain..start of vocals)

[Mary M]

I think you are making competent decisions. Based on our experience, I don't think combining steroids and abx will cause much of a problem in terms of making IVIg decisions. My explanation as to why I think this is as follows: Our dd12 was on abx prior to the 5-day steroid burst (prescribed by Dr K at our May 26 in-person consult). 3 days after the burst was complete dd showed some nice positive behaviors and then was exposed to the flu, her body reacted very negatively (no, she didn't get the flu-that would have been far more pleasant-LOL). Then on day 7 post 5-day steroid burst she broke out in scarletina rash (yes, she'd been on high dose abx for several months by then-prescribed by our ped). The ped figured it was a toxic strep release. Things were quite challenging here. Dr K explained what we were seeing as a triple threat to her system...steroid event, flu exposure and strep event. We got scheduled for an emergency IVIg with Dr K (we were already getting scheduled, this just pushed it up).

Mary

from Michigan

[PANDASmcnuggetsw/fry/coke]

KIMBALLOT and everybody...

 

Thank you for your quick, kind and thoughtful replies! To clarify, Dr K didn't say don't put her on abx during the burst observation period, he just was saying he generally did not believe ABX was effective treatment in the long run. This came up when we said...well how about abx intead of jumping to ivig after we are done with this burst?

 

I had scanned some posts and THOUGHT I saw that parents did the abx right after the burst with great results and that is why I wanted to go that route asap. Then I started second guessing everything.....

 

btw does the "burst" term include the roughly 2 week observation period following the steroid aministration? Or does it just mean WHEN you are taking them?

 

Thank you friends!

 

PANDASmcnuggets w/fry/coke

 

 

KIMBALLOT said....

[color="#FF0000"]I think I am reading that you were not comfortable with Dr. Ks recommendation to refrain from ABX for the time being and you asked your pediatrician for an ABX script - and started augmentin tonight. [/color]

[EAMom]

I would say most on this forum do antibiotics first (sometimes for years!), then steroid burst (staying on abs), THEN IVIG (stayinng on antibiotics). Also, IMO, of all the PANDAS docs, Dr. K. is the one who is most likely to rec. IVIG sooner, rather than later.

 

But, for your dd, there is an obvious ACTIVE infection (sinus), which IMO, makes the antibiotics use even more important.

Edited July 15, 2010 by EAMom