to burst or not to

[7upMom]

I am not near exp enough with the treatment part to give any advice on the antib, I am still in the learning/questioning stage also. We've never tried anything other than amoxic and penic and neither of those have worked at all here.

 

So did he prescribe those for you, will he if you want him to , or do you just get his treatment plan and then take it home to your own doctor?? Thats the part I don't understand. Do you just go in and hear their suggestions or do they actually do the treatment too? I know they do the IVIG but what about the inbetween stuff?

 

I feel so bad for you with the confusion , don't feel alone though, cause wow I think its really confusing too. 60-80% chance of working with the IVIG is what he said? I thought it was supp to be more than that?

 

He wants me to go to my doc here(i thought he could do it too) luckily, which is why i went to my ped yesterday to try to get a head start on a doc working with us...also my endo is an out of the box thinker, but more with endo stuff and not too peditatric but i believe will help me where he can..so yah try to find a willing doc where you are.

 

60-80 is what he said....

 

wow- I would be in a huge bind, I can't get a doc on board about doing anything outside of what they think here. UGH, thats a good heads up- thanx, I am really glad for you - you have a doc that will do that!!!!

[reactive]

Thanks for you quick reply. It is such a hard call, for us anyway. I don't want to make my son worse but I also think he may have PANDAS and I feel I may never know unless I go this route....Dr. K would probably have us do it...I would never spend thousands of dollars on IVIG without a burst...Dr. K would probably not order IVIG without the burst I imagine?

 

One option I was thinking of is doing the burst and stopping it if tics exploded and not keep him on the rest of the days. I still am unsure -now I am scared...I was convinced now is the right time for a burst that is why I called the doc earlier today for a rx but now that I read these posts I'm not sure anymore. I think I was thinking if the tics worsened some oh well we will deal with it; but the possibility of them increasing for a year...I did not consider that.

[Chemar]

Thanks for you quick reply. It is such a hard call, for us anyway. I don't want to make my son worse but I also think he may have PANDAS and I feel I may never know unless I go this route....Dr. K would probably have us do it...I would never spend thousands of dollars on IVIG without a burst...Dr. K would probably not order IVIG without the burst I imagine?

 

One option I was thinking of is doing the burst and stopping it if tics exploded and not keep him on the rest of the days. I still am unsure -now I am scared...I was convinced now is the right time for a burst that is why I called the doc earlier today for a rx but now that I read these posts I'm not sure anymore. I think I was thinking if the tics worsened some oh well we will deal with it; but the possibility of them increasing for a year...I did not consider that.

 

does your child have tourette syndrome?

 

if not, then the burst should hopefully not cause a tic increase. it is the increase in TS people that is the concern, or in those suspected as possible TS

[Debbie1]

I would be very careful about doing a burst given the stories some have posted. We had a positive experience with steroids, but we also had a very clear cut PANDAS case. If I were in your shoes and unsure of which way to go, I would have the bloodwork done and then do the longer course of antibiotics. You can see where how far that gets you and can always do the burst at a later date.

[PacificMama]

Hi,

I just wanted to offer an opinion from the lyme side since that is something you said you want to rule out. If a person does have lyme disease, steroids are very harmful and can make things much worse.

 

As for lyme testing, you will want to skip ELISA, and go straight to a Western Blot test. Best labs for this are Igenix, and Clongen. Insist with your doctor to use one of these labs. And remember, lyme testing is absolutely inconclusive. A positive test (that is, CDC positive) is usually reliable. However, a negative test does not rule out lyme. Lyme is a clinical diagnosis (as per CDC and every other authority). That is why it's so important to have a doctor who is very familiar with lyme, and reading test results, to make the call.

 

Hope that helps.

[dcmom]

Can you find a local neurologist who works with TS a lot? They may be able to help you as far as what the chances of steroids affecting a TS patient would be. I would also consider talking to Dr Trifiletti about this, you could email him. I totally appreciate anecdotal stories, and really believe them, but it also helps to look at the big picture, including the real chance of whether your child has TS (has anyone told you that?)- and the chance of steroids triggering debilitating tics.

 

Dr K uses the burst as a diagnostic tool. I would email him the stories you have heard, and your concern about the burst, and see what he thinks. Do you have any other options with him other than doing a burst?

 

My girls don't have tics, but the bursts REALLY helped them (though in most cases temporarily).

[reactive]

Thanks for you quick reply. It is such a hard call, for us anyway. I don't want to make my son worse but I also think he may have PANDAS and I feel I may never know unless I go this route....Dr. K would probably have us do it...I would never spend thousands of dollars on IVIG without a burst...Dr. K would probably not order IVIG without the burst I imagine?

 

One option I was thinking of is doing the burst and stopping it if tics exploded and not keep him on the rest of the days. I still am unsure -now I am scared...I was convinced now is the right time for a burst that is why I called the doc earlier today for a rx but now that I read these posts I'm not sure anymore. I think I was thinking if the tics worsened some oh well we will deal with it; but the possibility of them increasing for a year...I did not consider that.

 

does your child have tourette syndrome?

 

if not, then the burst should hopefully not cause a tic increase. it is the increase in TS people that is the concern, or in those suspected as possible TS

Well...I think our situation is a little "complicated" . I have earlier posts on here. Lets just say, my ds9 had a HUGE onset of debilitating OCD, tics, hallucinations, joint and leg pain, staring, spitting, arms waving, jumping and humming and arms flapping, ect at age four. He was completely and utterly incapacitated for about 6 weeks, could not go to preschool. It then took several months for symptoms to go away. Huge onset was 2 weeks after respiratory infection but at that time rapid and culture for strep neg. ASO only test done by neuro at onset. This ASO was neg. So, we were told not PANDAS. Our neuro says TS. Ever since then long hx strep, recurrent strep, tonsils out, strep in family, over last 5 years sx increase with strep or exposure...he does great in summer and bad Dec thru MArch. So now we are looking into PANDAS again. I have autoimmune reactive arthitis and had many strep as a kid.

 

I realize my ds may have TS but no one can explain to us why if that is the case why so severe at age four and why the joint and leg pain and had to be carried at times back then. So I am not sure if he is plain TS. He has many PANDAS symptoms but since the strep was not found at age four it has been discounted by our neuro. My gut tells me more is going on but I could be wrong. My son was sick with a virus again 2 weeks ago, neg fro strep again, my mom watched him for us one day and 2 days later she got a really bad impetigo (SP?) rash. Stuff like that happens to us every now and then. ????????

[Chemar]

hi reactive

 

yes I guess it is possible you are looking at both TS as well as either PANDAS or, if the term is still in use, PITAND, where an infective agent other than strep can trigger all these things

 

as I honestly dont know enough outside of the TS/OCD realm that we have dealt with, I cant comment beyond that.

 

all I can comment on is the personal and anecdotal reports of TS tics increasing after steroid burst

[Fixit]

Can you find a local neurologist who works with TS a lot? They may be able to help you as far as what the chances of steroids affecting a TS patient would be. I would also consider talking to Dr Trifiletti about this, you could email him. I totally appreciate anecdotal stories, and really believe them, but it also helps to look at the big picture, including the real chance of whether your child has TS (has anyone told you that?)- and the chance of steroids triggering debilitating tics.

 

Dr K uses the burst as a diagnostic tool. I would email him the stories you have heard, and your concern about the burst, and see what he thinks. Do you have any other options with him other than doing a burst?

 

My girls don't have tics, but the bursts REALLY helped them (though in most cases temporarily).

 

i have another neuro appt tomorrow???? its been about 9 months since i've seen this doc...she says her son and hubby have ts....

Now a couple of thing i know...missory loves company and i attest to that in my own life. And i've mentioned pandas to this and another neuro in PA that i cried about on the other board and they are not biting on anyone having pandas....i'm mainly going so if DS wants meds i would lilke to be more informed on them...i will now ask about the steriods though. thanks for reminding me

BIG PS.....none of the docs have ordered ANY labs or tests...i have done them all myself....so all diagnonsis is on physical presentation(tics) not looking for any possible other causes...so to them everything is a duck...to me, just because my kid has feathers and wings could mean he's a duck or chicken or a sparrow.

There has been no formal dx , it hasn't been a year yet,but even if they did, so what...they didn't run any test, no mri's and like Dr K says...nobody knows.what's happening with ts...at least he honest....and even though they may be starting to find commonalities in gene links, i would love to see if that very same gene commonality is the same for pandas and pitands

Also on tics the board a woman recently said her boys ts went away after 2-3 years and is now back...and now questioning ts and i think might be on this board now...so being over year might mean diddly..if you are reading i would love for your thoughts

So my concern is pandas and what if i miss the time line as dr k is concerned about his age and what if it is also now towards Ts after so many onsets and i really screw things up, AND go broke

[thereishope]

First, I haven't read all responses so I apologize if I'm duplicating what others have said. He wasn't going to try different antibiotics until you asked about them? Just go straight to IVIG? I know your son is 10 but, and this is my opinion, I would want to try stronger abs first. That's just my opinion. Does IVIG clear a person of bacterial infections that they have at time of IVIG? Even if I did do IVIG, I would still feel more comfortable doing abs prior to treatment and years after.

 

This is my next question, do you want to do IVIG? Is it an option for you, even money wise? A steroid burst helped my son with recovery (w/o IVIG), but it was also used rather early in his second exacerbation after we found out he had strep again. If you believe you would be using it soley as a diagnostic tool, well, if you have that much worry about doing it, I would say to pass. Will he consider still doing IVIG if you skip the streroid burst? How confident is he in is dx? Have you done the Cunningham study?

 

One more question, how does your son react to Ibuprofen?

 

Just don't rush into your decison. Make sure you feel comfortable in whatever you decide.

[Fixit]

First, I haven't read all responses so I apologize if I'm duplicating what others have said. He wasn't going to try different antibiotics until you asked about them? Just go straight to IVIG? I know your son is 10 but, and this is my opinion, I would want to try stronger abs first. That's just my opinion. Does IVIG clear a person of bacterial infections that they have at time of IVIG? Even if I did do IVIG, I would still feel more comfortable doing abs prior to treatment and years after.

 

This is my next question, do you want to do IVIG? Is it an option for you, even money wise? A steroid burst helped my son with recovery (w/o IVIG), but it was also used rather early in his second exacerbation after we found out he had strep again. If you believe you would be using it soley as a diagnostic tool, well, if you have that much worry about doing it, I would say to pass. Will he consider still doing IVIG if you skip the streroid burst? How confident is he in is dx? Have you done the Cunningham study?

 

One more question, how does your son react to Ibuprofen?

 

Just don't rush into your decison. Make sure you feel comfortable in whatever you decide.

 

1) correct, 2-3tests////aso antidnase and mycoplama....then straight to burst...then stright to ivig

i asked about abx and he says i can try if i like but that is not a long term solution or is would be trial at best....i don't get it...hasn't he done long term /or high dose anitbiotics for anyone here.....or is it just me

 

2) i don't know about ivig ...i guess if i had a 90% gaurantee and of an 80% recovery, i'd sell my house.....i know he is 10 and dr k said it wouldn't hurt to try, for a month at longest but that's it...i think he's concerned about ticking clock and that tics are the hardest to resolve.....but only a 60-80 %chance of working...gollyy.....and he said even if it doesn't work doesn't mean he still doens't have pandas

 

3) i'm not sure about ibuprofen....i get concerned giving it so i'v only given one 200mg maybe 3 nights in a row if things are really bad...maybe from being sore from ticcing.....can i give more than that he is 79 pounds...

i'm concerned about bleeding/thinning i also give him 3 fish oil a night which i've read can lead to excessive bleeding if given too much

 

2)did cunning test...105 camk maybe marginal as per eamom and buster pointed out a couple low scores in chart

[Kayanne]

I'm pretty sure (but I might be wrong) that those children who have already had IVIG with Dr. K are the ones who he prescribes longer courses of antibiotics.

 

To try the steroid or not is a hard decision if you are not sure this is PANDAS...your son's CamK score was really marginal. Was the blood drawn before, during or after an execerbation? Did Dr. K have any opinion on his CamK score?

 

Also, I would definetly discuss the steroid with the endo...he should have some insight for you.

 

I think it is wise to dig as deep as you can for answers, if you are not sure this is PANDAS.

 

Steroids were very benefical for us, but our daughter's case was very clearly PANDAS: multiple positive rapid strep tests, a very different child within 2-3 weeks of first strep test, and she responded really well to antibiotics.

 

I completely agree with the other posters that a longer trial of antibiotics would be a good thing to try.

 

Have you tried all the recommended supplements, allergy testing, elimination diets and other things that are frequently mentioned on the TS board?

 

I do think that Dr. K does have a "honed" protocol, perhaps a phone consultation with Dr. T. would give you more answers...I think he believes in really digging to try to find (if any) what type of infection could be causing a child's symptoms.

 

It's a hard call...I'm sorry that you are going through this!

 

~Karen

[Fixit]

I'm pretty sure (but I might be wrong) that those children who have already had IVIG with Dr. K are the ones who he prescribes longer courses of antibiotics.

 

To try the steroid or not is a hard decision if you are not sure this is PANDAS...your son's CamK score was really marginal. Was the blood drawn before, during or after an execerbation? Did Dr. K have any opinion on his CamK score?

 

Also, I would definetly discuss the steroid with the endo...he should have some insight for you.

 

I think it is wise to dig as deep as you can for answers, if you are not sure this is PANDAS.

 

Steroids were very benefical for us, but our daughter's case was very clearly PANDAS: multiple positive rapid strep tests, a very different child within 2-3 weeks of first strep test, and she responded really well to antibiotics.

 

I completely agree with the other posters that a longer trial of antibiotics would be a good thing to try.

 

Have you tried all the recommended supplements, allergy testing, elimination diets and other things that are frequently mentioned on the TS board?

 

I do think that Dr. K does have a "honed" protocol, perhaps a phone consultation with Dr. T. would give you more answers...I think he believes in really digging to try to find (if any) what type of infection could be causing a child's symptoms.

 

It's a hard call...I'm sorry that you are going through this!

 

~Karen

 

Ds has had strep at roughly 10-14 between the ages of 2 1/2 - 8 so about 2-3 times a year, tic with each and remit complet by 4 weeks post drugs...I'm afraid there was too much damage prior to this onset which wasn't pos....titers low....

As per Dr K i'm doing acouple more tests.

I guess per our history Dr K thinks he is pandas...and if i got this right, even if we fail the burst and fail ivig, he doens't feel it necessarily excludes pandas/pit for us, he is still looking for answers and info to( so no matter what i wil always be lingering out there,,,,unsure)

 

Just Got back from endo..i told him we were gf/cf and it didn't get necesaarly get better at that point, but as i look back they were better than they are now.(as they seem worse)..he said it may take a year or more to get the inflammaton down and correct all that is going on

That diet s.jlini!!

i am going to do a lyme titer though i realize that may not be the best test but it's covered by ins.

He's suggesting a stool sample to Enterlabs??? to get a real IGA test....he suspects there could be something there...but i'm getting a full immuglobuline panel as that again will be covered by ins.

I wish i had these test done earlier....all the sudden i now have a couple of docs to work with!!

[PKM]

step 3 ivig.... and even if it is pandas and i am not trying to scare anyone but i'm freaked too...60-80% chance it works

and that's if i can get insurance to cover!!

 

 

 

I can't give any insight regarding the steroid burst decision..........I too may be facing that decision sometime soon and I really don't know what I'll do either. Even though my son's case seems very much like post-streptococcal disease (he was diagnosed with Sydenham's one year ago - he had a lot of chorea and also a lot of tics - things keep getting stirred up with any sort of immune system challenge). Despite this I still wonder - could he somehow have TS too and I might make it worse by giving him a steroid burst??? Tough decision.

 

I noticed that Dr.K told you that the IVIG only has a 60-80% chance of working?? Did he mean 60-80% chance of only one dose of IVIG working but that more doses could work (some children seem to have several doses of IVIG). Also, did he talk about doing plasmapheresis followed by IVIG instead because your son's issues are primarily tic related? I noticed on his Autism One Radio Program interview he stated that this course of treatment was superior to IVIG alone for children who have tics as their prominant or hallmark symptom. Did he address this at all with you?

 

Also did he suggest that he would keep trying to work with you and your son if the first IVIG did not prove to be successful? I thought I had read somewhere that Dr. K had a fairly high success rate at treating these kids - 60-80% doesn't seem that high to me - unless he plans to keep working with you and try other things if that first IVIG doesn't work (I thought I read that he was closer to 90% successful at treating these kids).

 

Thanks

PKM

[faith]

Fixit,

As I've mentioned I did not wind up doing the steroid burst, but we were prescribed a 30 day, so my concerns were a little different. Also, this was a few months ago that I was considering this, but in case you haven't searched the board, here is the thread where I pretty much had the same concerns as you, so you can read some of the replies. sorry to confuse you more, but maybe it will help your decision.

 

http://www.latitudes.org/forums/index.php?...ic=5851&hl=

 

good luck

Faith