New to forum - need help with Cunningham numbers

[Mammom]

Hi all,

 

I am new to posting on the forum, but have been reading since June. At that time, DS7 developed sudden onset of tics, extreme hyperactivity, mild OCD, four days after beginning treatment for strep throat infection. He was treated with Augmentin for 10 days. His symptoms continued to increase to include bedwetting, nightmares, and constant vocal tics. I first made contact with Diana P. via Pandasnetwork.org, and she has been extremely helpful. We saw Dr. L in August who did prescribe antibiotics prophylactically. She suggested the Cunningham test. I waited to see if symptoms were abating, but finally had the test run at the end of Sept.

 

I wonder if anyone can explain these results: Cam Kinase II - 156 (this one I understand is above the median for Pandas on supporting doc. sent). It's these other numbers that I don't really understand: Anti-Lyso. - 320, Anti_Tubulin - 1000, Anti-Dop1 - 2000, Anti-dop2 - 8000.

 

Any input would be greatly appreciated. It appears that those posting on this forum are much more informed than any local doctors that I have been able to discuss this with.

 

Thanks much,

Dana

[faith]

Hello Dana,

what abx is he on and how much? do you feel it is helping at all? Was this his first time having strep and those subsequent tics and behavior? What happened when he was on the Augmentin the first time for the 10 days? ....

 

Faith

[Mammom]

Hello Dana,

what abx is he on and how much? do you feel it is helping at all? Was this his first time having strep and those subsequent tics and behavior? What happened when he was on the Augmentin the first time for the 10 days? ....

 

Hi Faith - He actually had an earlier bout of strep last sept., where he was treated with a 10 day course of omnicef. I actually noticed a few tics 4 - 5 days into the treatment, and the quickly cleared up. So, then in June he was treated with a 10 day course of Augmentin but I don't remember the dosage. I have always felt that perhaps the antibiotic/dosage in June contributed to the problem - like maybe if I had requested Omnicef again, he would have had a quick cessation of symptoms. But I will never really know this for sure. At any rate, we are on Pen VK 250mg (2x/day). He is better with new behaviors/movements seeming to come on one day and be gone within a few days. His hyperactivity comes in bursts, rather than the near constant fidgitiness that occurred in the beginning. I don't know if the antibiotic has anything to do with this. Dr. L did not seem to think it helps with symptoms - only if there is ongoing or active infection.

[faith]

Dana,

so you are trying to treat an underlying infection? but you don't know if he actually has any infection presently? if she doesn't think the abx is for the symptoms, then what did she prescribe it for? just to keep infection at bay? what will come next according to Dr. L. we are schedule to see her soon. Are you son's symtoms mild at present?

 

Faith

[Megs_Mom]

I wonder if anyone can explain these results: Cam Kinase II - 156 (this one I understand is above the median for Pandas on supporting doc. sent). It's these other numbers that I don't really understand: Anti-Lyso. - 320, Anti_Tubulin - 1000, Anti-Dop1 - 2000, Anti-dop2 - 8000.

 

Thanks much,

Dana

 

All of your other numbers are in the normal range, assuming these are the results at 2 hours? The first 3 are at the top of the normal range. Based on your anti-lyso, I am guessing that you see little to no OCD - is that right?

[peglem]

Mammom,

If you email Dr. Cunningham's lab with questions, they are very, very good at getting back to you and explaining things!

[Mammom]

I wonder if anyone can explain these results: Cam Kinase II - 156 (this one I understand is above the median for Pandas on supporting doc. sent). It's these other numbers that I don't really understand: Anti-Lyso. - 320, Anti_Tubulin - 1000, Anti-Dop1 - 2000, Anti-dop2 - 8000.

 

Thanks much,

Dana

 

All of your other numbers are in the normal range, assuming these are the results at 2 hours? The first 3 are at the top of the normal range. Based on your anti-lyso, I am guessing that you see little to no OCD - is that right?

 

You are right - any OCD is minimal. He did start biting at cuticles and finger nails, which I assume could be construed as OCD?

Yes, my note from Adita says 2 hours.

[Mammom]

Dana,

so you are trying to treat an underlying infection? but you don't know if he actually has any infection presently? if she doesn't think the abx is for the symptoms, then what did she prescribe it for? just to keep infection at bay? what will come next according to Dr. L. we are schedule to see her soon. Are you son's symtoms mild at present?

 

Faith

 

 

No, our strep titers were low taken just prior to the office concult with Dr. L. So, she felt there was no active infection. He did present only with minimal/mild symptoms in her office. She did see some tics as well as chorea (piano fingers, milk maids grip, something with his tongue and also his toe). His symptoms are always worse at home or just with family. At the time of the office visit he had multiple motor tics and absoutely constant vocal tics (cough, throat clear, snort), but she did not see much of this . The next step for us was to get the cunningham test, but Dr. L thought maybe we should wait for an exacerbation. I went ahead and had the test run because we continued to have sypmtoms and still do. She prescribed antibiotics because I wanted to prevent another infection while he was stilling healing...

 

Dana

[momofgirls]

I just want to add that my daughters cam k was only 137 and anti neuronal titers were all normal. Our doc prescribed 1200mg augmentin a day. At six weeks on this dose symptoms are almost gone. She had moderate tics and mild OCD.

[EAMom]

Dana, Faith,

 

IMO antibiotics are important for a few reasons:

1) prevent another strep infection

2) immune modulation/anti-inflammatory effects (commonly know with Azith, but may happen with other abs???)

 

3) and...(this may not be what Dr. Latimer believes, but I do based on experiences of myself, many others on this forum, and also Saving Sammy)...long term full-strength anti-biotics (much more than 10 days! I'm talking possibly months/ years) really do more for pandas symptoms than just the low dose pen prophylaxis.

Saving Sammy actually gives a really good example of this. I believe (I'd have to check the book) he stayed on that really high dose of Augmentin for 3 years and then a couple more years on a lower dose....until well past puberty.

 

I don't know if it is that these kids actually have low levels (possibly in amounts that are not easily cultured, or in areas that are not easily cultured) of intracellular strep hiding out in their bodies and /or they have an altered immune system against strep so the "typical" 10 day course of antibiotics "and the strep is gone" does NOT apply to them, or some other explanation. But whatever it is, many find that these kids do best on higher doses of the right abs for longer periods of time.

 

I should add that these kids can be very very sensitive to strep. My dd reacts when family members have strep (even though she herself is on full-strength azith). They also react to other bacterial infections (which the abs would help prevent)/viruses (which the abs shouldn't really help).

[Mammom]

I just want to add that my daughters cam k was only 137 and anti neuronal titers were all normal. Our doc prescribed 1200mg augmentin a day. At six weeks on this dose symptoms are almost gone. She had moderate tics and mild OCD.

 

Hi Momofgirls,

 

Thanks for that information. It is very helpful to hear the experiences of others. We have been on the PenVK for about 2 months. Again, the lessening of symptoms from onset to now may or may not have anything to do with this.

Is she still on the Augmentin at that same dose? I really don't know how I might get someone to prescribe that for us. The doctors we have seen seem to have more of a "let's wait this out" or "it will get better as he gets older attitude". It's just really discouraging.

[Mammom]

Dana, Faith,

 

IMO antibiotics are important for a few reasons:

1) prevent another strep infection

2) immune modulation/anti-inflammatory effects (commonly know with Azith, but may happen with other abs???)

 

3) and...(this may not be what Dr. Latimer believes, but I do based on experiences of myself, many others on this forum, and also Saving Sammy)...long term full-strength anti-biotics (much more than 10 days! I'm talking possibly months/ years) really do more for pandas symptoms than just the low dose pen prophylaxis.

Saving Sammy actually gives a really good example of this. I believe (I'd have to check the book) he stayed on that really high dose of Augmentin for 3 years and then a couple more years on a lower dose....until well past puberty.

 

I don't know if it is that these kids actually have low levels (possibly in amounts that are not easily cultured, or in areas that are not easily cultured) of intracellular strep hiding out in their bodies and /or they have an altered immune system against strep so the "typical" 10 day course of antibiotics "and the strep is gone" does NOT apply to them, or some other explanation. But whatever it is, many find that these kids do best on higher doses of the right abs for longer periods of time.

 

I should add that these kids can be very very sensitive to strep. My dd reacts when family members have strep (even though she herself is on full-strength azith). They also react to other bacterial infections (which the abs would help prevent)/viruses (which the abs shouldn't really help).

 

 

Yes, EAMom, I have read many of your posts. Your knowledge has really been helpful, and it just seems like you are onto something with these kids needing full strenght abs for an extended period of time. I am really not sure if I should try the Augmentin or Zithromax. Not that I can get anyone to prescribe either of them without an active infection. I asked our ped. several time in the weeks following onset for another course of antibiotics....but was never given anyting until Dr. L.

 

Dana

[EAMom]

I think Dr. Latimer would be more open to Augmentin than Azith. Is she local for you? Can you let her know the Camkinase confirmed pandas and that you saw some (or minimal? if that's the case) improvement on pen but would like to try a 1 mo. trial of high dose of Augmentin to see if you can make even more progress....it seems like a reasonable request to me!

[EAMom]

No, our strep titers were low taken just prior to the office concult with Dr. L. So, she felt there was no active infection.

Some kids just don't get elevated strep titers, even with an active infection. Ours had low titers (2mo. after FEVER/onset of behavior change) despite having positive cultures (both throat and perianal) for strep at the time. When we rechecked her titers 1 mo. later (3 mo. post FEVER/onset of beh. change) they were even lower.

I should also note that some kids have strep infections hiding out in places that people don't typically culture. Diana found out her son had a sinus infection only after it showed up on an MRI and girls can get vaginal strep.

 

 

He did present only with minimal/mild symptoms in her office. She did see some tics as well as chorea (piano fingers, milk maids grip, something with his tongue and also his toe). His symptoms are always worse at home or just with family.

Sometimes a video helps if your son has worse symptoms at home.

[Mammom]

I think Dr. Latimer would be more open to Augmentin than Azith. Is she local for you? Can you let her know the Camkinase confirmed pandas and that you saw some (or minimal? if that's the case) improvement on pen but would like to try a 1 mo. trial of high dose of Augmentin to see if you can make even more progress....it seems like a reasonable request to me!

 

 

Yes, I have e-mailed an called several times both to request a trial of another antibiotic and to let her know of the Cam score. I have not had any response from her since August. I may try to to a phone consult or maybe a follow up office visit, because she is just an hour and a half drive.