AAHH! It's more Cunningham results!

[fuelforall]

Well,ds9's initial number is back

Cam Kinase 134

Taken before IVIG treatment, not in exacerbation.

 

He is back to his old PANDAS self Wednesday and Thursday after seeming better Monday and Tuesday

 

No word yet on the titers.

 

Now it's time to tell the MD we need to experiment with long-term high dose antibiotics. I am well aware of all the negatives associated with it but my boy has had this problem(pandas) in some form or other since he was four, when the vocal tics began.

A year ago, when titers came back high (you know, the Dnase ASO stuff) we put him on zith 250 a day for a while. We also tried Omnicef and some other drug which aggravated the situation so we went back to zith.

Looks like its Augmentin experimentation time. Should I push for six weeks worth? Start at 250 a day, work up to 1000 by end of week?

A steroid burst seems useless- it only determines whether PANDAS is present and that's been confirmed already.

 

Looking to Worried Dad's example with Augmentin because I do not see how continued IVIG can help here.

 

Michael

[faith]

Michael,

could you refresh me on your sons symptoms. do you feel that number correlates with the severity of his symptoms? 134 is in the lower range, do you feel that fits your son's presentation? does he still hve vocal tics?

 

Also, is he on abx right now, or are you trying to get a doctor to prescribe it?

 

What do you mean by "back to his old PANDAS self"? you are post IVIG and things are not much better yet?

 

you never did the steroid burst? If so, how did that go?

 

Faith

[fuelforall]

Sure thing, Faith.

The number probably does correlate. His tics are mild (EXCEPT THE LONG TERM VOCAL ONES) and his OCD is mild, based on what I'm reading around here.

134 is just below the median, according to Cunningham's assistant. It's like a 4 on the scale of one to 10.

IVIG has done zip. That's what I said. Atrocious behavior, constant anger, vocalizations, silly noises, facial stuff, which have become learned over several years of having this issue (i suspect). He has the issue of going from silly to angry and back whenever his brain is idle or he is bored or whenever it strikes him. He does have times where he can be totally quiet, as though a switch has been turned on (or off)

 

As I said, he gets Zith twice a week prophylactically. He got more zith last year when titers came back high but it had no effect. Other drugs had worse effect. We never tried augmentin, my doctors don't like it, but who knows?

Never did steroid burst. Doctor is afraid of negatives there and not sure there's much point now.

Michael

 

 

Michael,

could you refresh me on your sons symptoms. do you feel that number correlates with the severity of his symptoms? 134 is in the lower range, do you feel that fits your son's presentation? does he still hve vocal tics?

 

Also, is he on abx right now, or are you trying to get a doctor to prescribe it?

 

What do you mean by "back to his old PANDAS self"? you are post IVIG and things are not much better yet?

 

you never did the steroid burst? If so, how did that go?

 

Faith

[faith]

Micheal,

there might still be time for the IVIG to kick in and start seeing some results. don't know, not been there. but probably you are right about upping the abx, only twice a week probably isn't doing much. What doctor did IVIG with you? they didn't do steroid before that? what negatives did they feel it would have?

 

 

Faith

[fuelforall]

Micheal,

there might still be time for the IVIG to kick in and start seeing some results. don't know, not been there. but probably you are right about upping the abx, only twice a week probably isn't doing much. What doctor did IVIG with you? they didn't do steroid before that? what negatives did they feel it would have?

 

 

Faith

 

I hope you're right about the iVIG because i'm feeling ripped off right now :}

Dr. Ken Bock. He isn't really versed on steroids and PANDAS, in many ways, he's still catching up with the new stuff from Dr K and Cunningham and so on . But he said he had had a bad experience trying steroids on a Pandas kid.

[memom]

Dr. Ken Bock. He isn't really versed on steroids and PANDAS, in many ways, he's still catching up with the new stuff from Dr K and Cunningham and so on . But he said he had had a bad experience trying steroids on a Pandas kid.

 

 

Have you read his book on the new childhood epidemic? If not, I would suggest you pick up a copy and read it. Eye opening and informative. He does mention Pandas in the book.

 

Ellie

[fuelforall]

Dr. Ken Bock. He isn't really versed on steroids and PANDAS, in many ways, he's still catching up with the new stuff from Dr K and Cunningham and so on . But he said he had had a bad experience trying steroids on a Pandas kid.

 

 

Have you read his book on the new childhood epidemic? If not, I would suggest you pick up a copy and read it. Eye opening and informative. He does mention Pandas in the book.

 

Ellie

Yes I read the book two years ago and came to him because of it. But he does seem to be a little behind on PANDAS issues. He had a patient in it who benefited from antibiotics but after the book came out, the child regressed and IVIG was needed. That's Nancy's daughter, Nancy has blogged here from time to time.

Without him, I would not have known about PANDAS. The trouble is, nothing has worked on my son so far and he is sick. I am very frustrated because I was hoping for some results somewhere.

[smartyjones]

[ Atrocious behavior, constant anger, vocalizations, silly noises, facial stuff, going from silly to angry and back whenever his brain is idle

 

I feel quite sure you've followed this path if you're with Dr. Bock, but thought I'd add it just in case not. . .

my son's presenting symptoms were mostly commonly described yeast symptoms. some of what you describe could be yeast related. Without technical facts, I feel there's a big relationship with the strep and yeast - not due to antibiotic use - my son hadn't been on abx for 2.5 years when symptoms presented. there was a study on here recently that mentioned an enzyme in the gut that is instrumental in digesting gluten and casein that binds with the strep if strep is present. I definintely feel there is something going on with the strep in the gut inflamming yeast.

 

My son has made some really good improvements, but I see some of the yeast-type behaviors returning in the past week or so - like shirt chewing.

I was recently reading some old info from Jacquelyn McCandeless on this forum and she recommended AquaFlora. We are not going to use that b/c we are with a ND who wants to try a similar product that isn't as strong.

 

i know it is so frustrating to feel you're grasping at straws for something to work and i apologize for throwing another one in the mix, but just thought it might be something to consider. . .

Kathy

[bronxmom2]

Hi Michael, I just wanted to say sorry that you're experiencing this disappointment.

 

As faith said, don't give up yet! I think it hasn't even been 3 weeks yet...

[fuelforall]

Hi Michael, I just wanted to say sorry that you're experiencing this disappointment.

 

As faith said, don't give up yet! I think it hasn't even been 3 weeks yet...

 

Kathy and Kristin, you are both correct.

Kathy, I went thru a lot of the yeast stuff for several months before coming to the pandas diagnosis. My son's yeast was retaken a few months back- stool sample - and it came back okay, Bock did not seem concerned with it. My son had been on so many anti fungals it makes me ill to think of it. bLEAH. That said, he gets twoprobiotics a day. I try not to allow to much sugar but you know how it is. He did gluten free, casein f ree a while and it did not help much really. The Pandas got in the way.

Kristin, Dr K said the same thing to me, he said maybe eight weeks. Don't change the prophylactic drugs at all (!) Twice a week is plenty.