CUNNINGHAM TEST RESULTS QUESTION

[pastacey]

Hi,

 

Son has rages, anxiety, swearing, OCD, some tics, driving ADHD and bipolar symptoms. All can on at same time when he was 7. Out of the blue. He became a different person. Now he has ups and downs. Meds don't work well.

 

We are waiting for the amazing Dr. L's interpretation of the Cunningham results but it could be weeks. She is taking time off. I love her dearly and want to be patient.

 

Sill, I'm frantic to understand.

 

Son tested in Cunningham as follows:

 

CaM kinase - 150 (mid- PANDAS range)

 

anti-lysoganglioside 320 (above normal mean which is 147)

 

anti-tubulin 250 normal range

 

anti-dopamine-1 2000 (above normal mean which is 1056)

 

anti-dopamine-2 4000 (normal ranges)

 

Pat

 

If this were your kid, what you would you do while you wait for Dr. L? Should I consider this PANDAS for sure? Are there any doctors out there who can tell me their interpretation? Should I approach my DAN doctor about giving abx? He is willing to do so. Son had a rash with Bactrim years ago so noone has giving him penicilin for years. DAN is willing to try.

[Phasmid]

I would find someone who follows the recognized treatment protocol in Dr. L's absence. I would not wait if this were my child.

[peglem]

Hi,

 

Son has rages, anxiety, swearing, OCD, some tics, driving ADHD and bipolar symptoms. All can on at same time when he was 7. Out of the blue. He became a different person. Now he has ups and downs. Meds don't work well.

 

We are waiting for the amazing Dr. L's interpretation of the Cunningham results but it could be weeks. She is taking time off. I love her dearly and want to be patient.

 

Sill, I'm frantic to understand.

 

Son tested in Cunningham as follows:

 

CaM kinase - 150 (mid- PANDAS range)

 

anti-lysoganglioside 320 (above normal mean which is 147)

 

anti-tubulin 250 normal range

 

anti-dopamine-1 2000 (above normal mean which is 1056)

 

anti-dopamine-2 4000 (normal ranges)

 

Pat

 

If this were your kid, what you would you do while you wait for Dr. L? Should I consider this PANDAS for sure? Are there any doctors out there who can tell me their interpretation? Should I approach my DAN doctor about giving abx? He is willing to do so. Son had a rash with Bactrim years ago so noone has giving him penicilin for years. DAN is willing to try.

I'd try either zithromax or augmentin- treatment dosage. You said he has ups and downs...when he has the downs, try prednisone. But, if you see improvement with abx, that's a clue that bacteria is playing a part. When you do get to see Dr.L, response to abx and steroids would be good info to have for her.

[EAMom]

How much does your son weight now? I would ask the DAN! for either high dose Azith. or Augmentin XR. Azith. might be better to try if they are worried about a Pennicillin allergy...but I don't know if someone who reacts to Bactrim would necessarily have a problem with Pen. In my mind Pen/Amoxcillin/Augmentin are more closely related...so if there is a Pen allergy I'd stay away from Augmentin.

 

I'd personally would want to wait until my son had been on high dose abs 1-2 mo. b-4 adding on a steroid (in case infection is lurking). But, meanwhile, you could add on advil to the antibiotics.

 

Have you gotten current throat cultures on you son and family members? It might be a good idea b-4 starting abs.

Edited June 7, 2010 by EAMom

[bgbarnes]

Hi,

 

Son has rages, anxiety, swearing, OCD, some tics, driving ADHD and bipolar symptoms. All can on at same time when he was 7. Out of the blue. He became a different person. Now he has ups and downs. Meds don't work well.

 

We are waiting for the amazing Dr. L's interpretation of the Cunningham results but it could be weeks. She is taking time off. I love her dearly and want to be patient.

 

Sill, I'm frantic to understand.

 

Son tested in Cunningham as follows:

 

CaM kinase - 150 (mid- PANDAS range)

 

anti-lysoganglioside 320 (above normal mean which is 147)

 

anti-tubulin 250 normal range

 

anti-dopamine-1 2000 (above normal mean which is 1056)

 

anti-dopamine-2 4000 (normal ranges)

 

Pat

 

If this were your kid, what you would you do while you wait for Dr. L? Should I consider this PANDAS for sure? Are there any doctors out there who can tell me their interpretation? Should I approach my DAN doctor about giving abx? He is willing to do so. Son had a rash with Bactrim years ago so noone has giving him penicilin for years. DAN is willing to try.

 

For me my Cam K was enough to have me FULLY convinced of PANDAS- I would try and get he ABX ASAP! Your 's is definitely PANDAS range. The other parents have a better idea regarding does and type!! Good Luck!!

[kimballot]

Hi Pat - I agree with everyone above. I would add in that I would get baseline bloodwork before starting abx. ASO, DNASE B, mycoplasma, lyme (I believe it is western blot that they ask for), Immune status panel, S pneumonaie titers (all 14). Some docs also look at C3D immune compounds now. Perhaps your DAN Doc could order those? This will give you a picture of your son's levels in exacerbation.

[Fixit]

I'd personally would want to wait until my son had been on high dose abs 1-2 mo. b-4 adding on a steroid (in case infection is lurking). But, meanwhile, you could add on advil to the antibiotics.

 

I think this is huge.. from personal experience i would agree to at leat wait a couple of weeks to a month at minimum before steroids

and remember to keep the abx in check...we needed to desperately add.antifungals to keep things in check....

 

I KNOW....when the fire is raging you just want to throw everything at it.....it is so hard to wait!!!!

Edited June 7, 2010 by Fixit

[dcmom]

pastacey-

 

How old is your son now? How long have you been dealing with this?

 

I would pretty conclusively consider this pandas.

 

It is possible that there is or isn't a current infection. I would not wait. I would get him on either treatment dose of zithromax or high dose augmentin. I would do this for 30 days. Be sure to do probiotics as well. In the meantime, you could do some bloodwork to screen for lyme, strep titers and myco P.

 

After the month of antibiotics, I would definately consider a month long, tapering steroid burst.

 

Where in PA are you? I may have a doc for you.

[pastacey]

pastacey-

 

How old is your son now? How long have you been dealing with this?

 

I would pretty conclusively consider this pandas.

 

It is possible that there is or isn't a current infection. I would not wait. I would get him on either treatment dose of zithromax or high dose augmentin. I would do this for 30 days. Be sure to do probiotics as well. In the meantime, you could do some bloodwork to screen for lyme, strep titers and myco P.

 

After the month of antibiotics, I would definately consider a month long, tapering steroid burst.

 

Where in PA are you? I may have a doc for you.

 

I Live in Massachusetts. I love Dr. L so much and trust her -- not to say that the other PANDAS experts are not as lovable. My son has had this problem for 6 years. We did try antibiotics once for about a month three years ago with no noticeable results.

 

Thanks,

pat

Edited June 7, 2010 by pastacey

[pastacey]

Forgive my ignorance -- perhaps it was Augmentin that he reacted to, but that was ten years ago, and he just got a rash on his face. he does though have mold allergies still, which come and go. He weighs about 98 lbs.

 

How do you define high dose specifically?

 

How much does your son weight now? I would ask the DAN! for either high dose Azith. or Augmentin XR. Azith. might be better to try if they are worried about a Pennicillin allergy...but I don't know if someone who reacts to Bactrim would necessarily have a problem with Pen. In my mind Pen/Amoxcillin/Augmentin are more closely related...so if there is a Pen allergy I'd stay away from Augmentin.

 

I'd personally would want to wait until my son had been on high dose abs 1-2 mo. b-4 adding on a steroid (in case infection is lurking). But, meanwhile, you could add on advil to the antibiotics.

 

Have you gotten current throat cultures on you son and family members? It might be a good idea b-4 starting abs.

[dcmom]

Pat-

 

We see Dr L, too, and love her as well.

 

I was not really suggesting that you find a new doc, but more suggesting that you not wait to start treatment. Has Dr L been treating him for pandas?

 

I guess what I am thinking, is to get him on antibiotics now- for a month- while you wait for her to return.

 

There is SO much waiting with pandas. Waiting to get the right diagnosis (for some that takes years), waiting to get to the right doc, waiting to see if treatments work, waiting to add another variable, etc. All the time our kids are suffering. I cannot stand the waiting. If you could do the antibiotics, and then maybe even the steroids, while you are waiting to get to Dr L- you will have sped up the process...

 

That is IF you can find another willing doc.

[EAMom]

Any way you can remember dose and type? (For example, if he was on Augmentin, without improvement, I'd try Azith this time around.)

 

 

As far as doses:

I'd try 500mg 1x daily Azith. for a 98 pounder

or

AugmentinXR (assuming no allergy) 1000mg 2xdaily--this was the dose Sammy was on and he was about that size.

 

Maybe others will chime in with more Augmentin info. (my dd is on Azith.)