to burst or not to

[Fixit]

OK…had consult with dr K today.

He still thinks it is very likely a case of still being pandas.

 

DS presents with tics…in the past and on occasion we have had oppostional behavior.

I would walk on eggshells sometimes to not upset…we have terrible handwriting and erasing…and he used to draw all the time very well…and stopped because it did get bad and he didn’t like his own work. He has recently regained interest in drawing. Not too much opposional stuff anymore, 1 or 2 complusions I guess, but really just tics. And not to retrace all history but it would always be 1 tic and now we have several.

 

Dr K wants a couple of tests and I asked about the lymes, he said ok but not too interested in that…(.i’d like to make sure I get the right lymes test, not just the titers right, any suggestions?)

 

Here’s my concern…(and I hope I am wording this right and not leaving anything out or implying something wrong) after the blood draw, Dr K wants to do a 5 day burst. I am so scared….He thinks anti’s may or maynot improve anything and would probably be a short term improvement. If the burst works it is more/more likely pandas and even if it doesn’t work it doesn’t necessarily exclude it either. That would just be a really good tester. Ultimately he recommended IVIG as my ds will be 10 soon and tics are the hardest thing/last thing to get rid of and I need to step it up because of his age. I am scared of the burst as I have heard that if it is TS that it will make things worse. Dr K said no that’s not true. Mind you, I think so called TS will ultimately be a form of Pandas/Pitands one day(allergies etc) and Dr K (if I’m wording this right)thinks similar but it will be another 10 years(great ). (as I am concerned, if you asked prior to this onset I would be classic pandas with complete remit 4 weeks post antibiotics,,,,,did it become TS)(Dr K doesn’t know either as he is very honest in his thoughts) Oh and he really focuses more on the pandas side than the pitands as I guess it is easier to follow and have more consistency with it

 

Anyway, should I do the burst??? If it makes things worse, for how long? Can you do anything to quite the worsening? Does anyone regret doing the burst? Has anyone avoided the burst for the same reason?

 

I mentioned the thyroid thing to him and he doesn’t feel there is a correlation and if there were he feels it would be more towards the hyper side?? That part I don’t get.

 

Again maybe as per Buster once replying to me…maybe I will be that first person,,,with the new strain, new correlation or what ever….why can’t I fall within the margins?

 

Also, has anyone relinquished pandas for another answer?

 

I would love any and all replys. And you really smart technical people please chime in

[Chemar]

fixit

I am going to just mention again of the potential problem with a steroid burst *if* your child may in fact have TS

 

some people with TS react with more tics if they are exposed to steroids

 

that doesnt mean it will be that way for everyone, but there is always the possibility. It happened to my husband where tics he hadnt had since childhood re-emerged after a prednisone burst to help with severe inflammation from a spinal injury. I have heard from other people with TS who had tics wax after steroid treatment

 

if your child is PANDAS then I know the steroids are very beneficial! so I am not negating the treatment at all....

just again mentioning the possibility of increased tics IF Tourette Syndrome

[7upMom]

Fixit

 

I know you are ? the burst right now, but do you think your ultimate goal is the IVIG after your visit today with Dr K? Or do you feel more confused now?

[Fixit]

fixit

I am going to just mention again of the potential problem with a steroid burst *if* your child may in fact have TS

 

some people with TS react with more tics if they are exposed to steroids

 

that doesnt mean it will be that way for everyone, but there is always the possibility. It happened to my husband where tics he hadnt had since childhood re-emerged after a prednisone burst to help with severe inflammation from a spinal injury. I have heard from other people with TS who had tics wax after steroid treatment

 

if your child is PANDAS then I know the steroids are very beneficial! so I am not negating the treatment at all....

just again mentioning the possibility of increased tics IF Tourette Syndrome

 

Do you know or have any ideas why that happens?

And is your husband better and how long did it take for it to get better?

 

I just don't know what to do...again i would say pandas till this point, but i am doubting myself...

The anitbiotics would always! work till this onset...But because i can date it 4/6/09 dr k still wants to follow this path..and this onset was also 1 tic but over time we add 1 about every 6-8 weeks????? we currently a have about 5 different kind in a day and rotating in and out with 7-8

[Chemar]

no, my husband's tics have not returned to pre-steroid burst levels and are more elvated than they have been since he was a child. He is in his 60s

 

I am not a biochemist etc but from my understanding it has to do with the stimulation of dopamine or maybe altered dopamine receptors that occurs with corticosteroids? I am not sure that anyone has actually done research on it so this is pure speculation on my behalf. I know there has also been discussion on this happening with androgenic steroids, and that this *may* be why more boys than girls manifest TS

 

it is one of those things that I only mention because of our personal experience re my husband, and also the anecdotal reports I have from others on the subject. My son's GI doctor had also heard of it, as when my son was also dx with Crohn's , the doctor agreed it was too risky to give him prednisone as it may trigger his tics

[7upMom]

no, my husband's tics have not returned to pre-steroid burst levels and are more elvated than they have been since he was a child. He is in his 60s

 

I am not a biochemist etc but from my understanding it has to do with the stimulation of dopamine or maybe altered dopamine receptors that occurs with corticosteroids? I am not sure that anyone has actually done research on it so this is pure speculation on my behalf. I know there has also been discussion on this happening with androgenic steroids, and that this *may* be why more boys than girls manifest TS

 

it is one of those things that I only mention because of our personal experience re my husband, and also the anecdotal reports I have from others on the subject. My son's GI doctor had also heard of it, as when my son was also dx with Crohn's , the doctor agreed it was too risky to give him prednisone as it may trigger his tics

 

Chemar,

If one has a family history of t/s and ocd and tics don't wax/wane how are you supp to know 1/ if its t/s or Pandas and 2/ if its tics from tourettes or ocd type tics ?

[Chemar]

Hi 7upMom

we have a family history of TS, dating at least 3 generations that we know of

all have had OCD co-morbid with tics as part of the Tourette Syndrome, and have manifest what our doctor called "tourettic OCD" ie where tics and OCD sometimes "morph" into each other

all have had tics that waxed and waned

 

I dont know much about PANDAS beyond what we were told by Dr Murphy when my son was evaluated by her back in 2001 so I honestly dont know how doctors would differentiate what you are asking about 7upMom

 

from my limited understanding they look at a combination of history, cultures, titres etc and now also the camkinase results to determine whether PANDAS

 

the difficulty I think in terms of the steroids is that some kids do also have genetic TS as well as PANDAS. I guess that is when one would need to be careful

 

the "textbook" criteria for TS is to have motor and vocal tics that wax and wane and are present for at least a year continuously. I do personally think that family history should also be considered before giving a TS diagnosis as I think many kids who tic with OCD may be dx with TS when in fact it is something else causing them, eg PANDAS or some of the other things we discuss on the tics board

 

but I am first to admit I dont know much about up to date PANDAS info

 

was just posting because of the steroid burst question

[Fixit]

Fixit

 

I know you are ? the burst right now, but do you think your ultimate goal is the IVIG after your visit today with Dr K? Or do you feel more confused now?

 

Well, he said if i want to try antibiotics the go 875mg augmenton 2x a day? would that be the right dose and the right drug?

 

he thought it would be a waist of time??? but when we had onset we only did 2 weeks of 250mg cephalexin 2x...

he doesn't seem to believe in the saving sammy thing?? don't quote me but that was pretty much the gist...

 

he said step 1...get new titers and a mycoplamsa test ,that's it ,,,,,i asked about lymes, said if i want he didn't think that was a point, maaayyybbeee if i were NE i reminded him we did live in PA 4 years and go up there frequently.

 

step 2 steriod bust

 

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!!

 

Thats its..and don't get me wrong...he wasn't cutting me off...he just seems to have hoaned his work (i guess in my case) to just this;;;;

 

Soooo....i don't know.......i'm afraid to stop writing..my options seem so few

[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?

[reactive]

Chemar:

 

Can you elaborate more on your husband? When did he do his burst? And how long has he been worse? My ds9 has increasing tics over last few days. I am struggling with this also and just earlier today called the neurology office to ask for a steroid burst. I don't know if they will give it to him. We were given a rx for risperdal on Friday 2-12-10 but did not yet start it. Over the weekend my ds9 tics increased even more and last night they were really bad. He was crying about his head bobbing and his eyes darting. We have a lot of PANDAS symptoms too...and plan to see Dr. K. I thought now would be a good time to do the burst to use it as a test before even seeing Dr. K.

 

Two things happened this weekend. First, his last day of Omnicef for an upper resp. infection was this past Sat. but on Fri night we started veramyst from the allergist which I think has a little steroid in it. I stopped the veramyst after Sun so he got that for 3 days, just in case that was increasing the tics. But after no antibiotics he is getting a weird "strep smell" again...our family doctor smelled it on him in Janauary and gave him antibiotics for it even though rapid strep in throat was negative (I have a prior post on here about that). So I don't know if tics increasing is due from veramyst, stopping the antibiotics or stress (going to doctors and talking about tics seems to increase tics)

 

I want to do the burst as the test to see if I get info from that for Dr. K. But I don't want to make him worse permanently...I can't tell from your post about your husband how long after the burst did symptoms worsen...are you saying it is permanent? I don't want to mess up here and make him permanently worse if he is TS.

[colleenrn]

Fixit-

Are you saying that your child only did 2 weeks of Keflex at 250mg/ twice per day? If that is the case, I would think a trial of a longer course would be warranted.

The thing about Amoxicillin/Augmentin is that it won't reach intracellular strep like Zithromax will. Have you tried Zith yet? Not sure what to say about the steroid burst b/c I have not done it with any of my children yet. My sister did it with her two children and had good results. During a bad flareup in her son, he was on an extended course (forget exactly how long, but weeks) and then tapered off. He did great while on steroids.

Colleen

[dcmom]

fixit- this is so hard. I feel for your position. We had it easy in that we had a clear pandas with strep onset, and no tics. So we did the abx and the burst, and ultimately pex.

 

I don't know Dr K, but think he has dealt with this a lot, and is very straight forward and realistic in what he is telling you. I do think a long term course of full strength abs, slowly tapering while watching symptoms, to a prophylactic dose is a good idea. I don't know if Saving Sammy dosage is necessary. But, I think his opinion (i am guessing here), to which I would agree, is that this is really autoimmune in nature. So he isn't concerned right now about a lingering infection, but that autoantibodies are triggered with immune challenges. So his ultimate goal is to get the ivig to disrupt this autoimmune process.

 

I think you need to look at the risk vs benefit, and unfortunately, look inside yourself and go with your gut. Antibiotics are a good idea, so I would start with that. Get the tests he requests, and to give you peace of mind, have the lyme test done (someone on the forum recommends a certain test that is the best- others are not so sensitive). If the steroids really make you uneasy- tell him that you just can't do it.

 

IVIG- well that is the current "gold standard". You may have to pay for it out of pocket, and there are NO gaurantees. But, if things are bad enough- then you will ultimately decide to go for it. It all comes down to possible risk vs possible benefits.

 

One of the hardest things about pandas is, nothing is "for sure".

 

I wish you the best, keep us posted.

[Fixit]

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....

[Fixit]

Fixit-

Are you saying that your child only did 2 weeks of Keflex at 250mg/ twice per day? If that is the case, I would think a trial of a longer course would be warranted.

The thing about Amoxicillin/Augmentin is that it won't reach intracellular strep like Zithromax will. Have you tried Zith yet? Not sure what to say about the steroid burst b/c I have not done it with any of my children yet. My sister did it with her two children and had good results. During a bad flareup in her son, he was on an extended course (forget exactly how long, but weeks) and then tapered off. He did great while on steroids.

Colleen

 

right just the 2 weeks

 

that's what i thought zith, was supposed to be better at this...

Can anyone else back that up....and at what dose, since i have to go back to my ped myself?

 

any reason you are waiting out the burst???

[Chemar]

Chemar:

 

Can you elaborate more on your husband? When did he do his burst? And how long has he been worse?

 

Hi

 

my husband had the steroid burst almost a year ago and his tics are still elevated compared with prior to the burst

 

his TS tics were minimal prior to it and had been for many years. they used to be high when he was a child, but had reduced to an occasional eye blink or throat clearing for decades

 

immediately that he started with the steroid burst on prednisone (day 1) his tics began to wax and by day 3 it was so bad that he couldnt even walk he was ticcing so much, and also very loud vocals

 

as mentioned above, his tics are still elevated, almost a year later.

 

his may be an extreme reaction because of his age and general health. but I have heard from other people who have noticed an increase in tics with steroids too.

 

I guess it is a hard call to make and I am not in any way suggesting that this isnt a very beneficial treatment for PANDAS kids (and for autoimmune illness in general)

 

just cautioning on the possible tic triggering effect for those with Tourette Syndrome