Results of seeing Dr K (first visit today)

[pixiesmommy]

So... we printed off a list of symptoms we have seen in the past and presently and took that with the most pertinent (we felt) tests, bloodwork results, etc and gave them to Dr K first thing. He immediately nodded and said she is classic PANDAS. He circled all the ones that jumped out at him- lots of strep in past few years, changes in speech/babytalk/fake languages, paranoia/hallucinations, history of unexplained fevers, bedwetting (sudden onset), tics, and a few more... said these are classic symptoms and the other things vary from child to child and is just the interesting icing on the cake.

 

For those who have never seen him, let me tell you, he is a breath of fresh air!!! He not only listened, but he rattled off lists of symptoms that we had not even THOUGHT to include in our list and it was right on the money. It brought tears to my eyes. He said we get so caught up in getting our kids through the bad patches and waiting for the other shoe to drop that our expectations become lowered and then you start to overlook things when you can just make it through the day. He is SO right. Her whole personality has been lost, including her joy for life, even when we are having a "good" patch.

 

He suggested leaving her on the Abilify 3mg if the psych wants to, or eliminating it on Friday if we need to because of the EPS (shoulder spasm), but either way to go ahead and get some bloodwork done. He wants us to get both done at once- his and Dr Cunningham's. He is actually part of the Cunningham study it sounds like (they even had kits in their office for bloodwork/serum collection for her.) Then we are going to do 5 days of steroids (Prednisolone- which is liquid Prednisone) and observe for a total of 14 days (including the 5 she is medicated.) My husband and I, as well as my ILs are to observe her and write about what we see, independently, without sharing our conclusions with each other. Then we are to email him the results at the end of the 14 days. He said not to get hung up on the details. The steroids are a diagnostic tool... if she improves then she definitely has PANDAS, and he said it would be very black and white (the difference in her behaviors.)

 

Since she has probably had PANDAS for more than a year, and probably more than a few years, he recommended going straight for the IVIG treatment due to that and her age (9.)

 

It felt like SUCH a simple visit.... almost TOO easy, after all we have been through these past few years with her. It was so refreshing to see someone look at her holistically (physical symptoms of fever, etc and behavioral of OCD, etc.) I wish we had found him sooner, but alas, there is a reason for everything.

 

Tomorrow we are off to get blood drawn and start the meds and then we wait!!!

[ShaesMom]

What is "his" blood work???

[Suzan]

Wow, great visit! You make me want to hop on a plane and go see him. Congrats and good luck! I too am interested in hearing what blood work he is drawing.

 

Susan

[pandas2boys]

Wow, great visit! You make me want to hop on a plane and go see him. Congrats and good luck! I too am interested in hearing what blood work he is drawing.

 

Susan

 

We did the phone consult with DR K ($325), and we hung up the phone with the exact same impression that pixiesmommy did. The only problem is the distance, we're from NJ. It would be very difficult to find a local Dr who would be willing to give us IVIG based on Dr K's say so. Only after that phone consult did we hear about Dr Latimer who is only a 3 hour drive and we have an appointment scheduled with her. But Dr K still gladly responds to our questions via email.

[pixiesmommy]

ASO titers and Anti D Nase B (I'm sure I spelled that wrong.)

 

Those are the same as Cunningham, correct? I think he just wanted blood drawn for himself as well as for the study so that he could be sure we got the results back. He said we should get the results back from him as soon as Friday.

[peglem]

ASO titers and Anti D Nase B (I'm sure I spelled that wrong.)

 

Those are the same as Cunningham, correct? I think he just wanted blood drawn for himself as well as for the study so that he could be sure we got the results back. He said we should get the results back from him as soon as Friday.

 

Cunningham does not check for ASO or AntiDnase titers. She checks Calcium/calmodulin kinaseII levels and 5 antineuronal antibodies.

[Buster]

The Cunningham tests are quite different from the ASO or Anti-DNAse B tests.

 

ASO and anti-DNAse B are commonly used to look for a prior strep infection that occurred in the last 2-6 weeks. ASO and anti-DNAse B both require a baseline as they are only meaningful when rising. A falling titer means nothing. A stable titer apparently means nothing. Most people don't have a baseline, so many labs indicate that a high value is positive -- but that's not always true as you could be on the downramp.

 

Cunningham's tests are not checking for strep, but rather are testing for a specific antibodies in the blood stream (24.3.1) that seems to interfere with neuronal signalling by competing with a brain chemical (lysoganglioside GM1) and memory formation (by triggering CaM Kinase II). In addition, Cunningham runs some other tests for additional antibodies that compete with other brain signalling chemicals (tubulin and dopamine).

 

The Cunningham tests are not testing for Strep. They are testing for residual antibodies that could cause problems in brain signalling if the blood-brain barrier is breached.

 

There are longer write ups about this in this forum -- let me know if you need to post #.

 

Regards,

 

Buster

 

 

ASO titers and Anti D Nase B (I'm sure I spelled that wrong.)

 

Those are the same as Cunningham, correct? I think he just wanted blood drawn for himself as well as for the study so that he could be sure we got the results back. He said we should get the results back from him as soon as Friday.

[pixiesmommy]

Sorry, sometimes I get lost with all the lingo as I am trying to absorb!! Forgive me for confusing the two and Thank you so much for clarifying!!

 

Dr K said the tests would tell him if she had had strep in the last YEAR though!!!

[pixiesmommy]

We went to get the bloodwork and they could not read Dr K's handwriting, so no bloodwork yet for us

 

Once we clarify what all he is ordering, I will list it here.

 

I'm still confused though about the ASO and Anti-DNAse B. If that does not show/prove anything, then why order it? Would it be for future comparisons?

 

Also, I'm confused about why some drs are seeming to treat w/steroids (in addition to using it for diagnostics) versus the IVIG. He said he had seen 5 days of steroids have a lasting effect for as long as 96 days. Is one more dangerous than another?

 

He said he was going to be in Germany next week because they are in the process of using a new diagnostic tool for PANDAS and he wants to learn about it. I wonder if he will start using something new when he returns.

 

I also talked to him about using a PET scan and participating in the study in Detroit, but he said a PET scans and/or MRIs are useless. I did reading about PET vs. MRI when looking at the basal ganglia and it sounds like apples vs. oranges. I wonder, even if he thinks it is useless (and maybe it is to him), if we should still have a PET done, and how that would impact any insurance coverage probs if it DOES show issues in the basal ganglia.

 

So many questions are swirling around in my mind....

[peglem]

I'm still confused though about the ASO and Anti-DNAse B. If that does not show/prove anything, then why order it? Would it be for future comparisons?

If these titers are elevated it is usually evidence of a recent strep infection, and yes, it can be used as a baseline measure for comparing future levels. The tricky thing is though, that if these titers are low it does NOT mean that there hasn't been a recent strep infection...I assume Dr. K knows this, but most doctors do not and misinterpret the lab results.

 

Also, I'm confused about why some drs are seeming to treat w/steroids (in addition to using it for diagnostics) versus the IVIG. He said he had seen 5 days of steroids have a lasting effect for as long as 96 days. Is one more dangerous than another?

 

I don't know the risk/safety comparison of the 2, but IVIG is very, very expensive, so if you get good results with steroid burst the thinking (for some) is why not treat with the less expensive and less invasive method, as long as it is effective.

 

I don't have information on the scans, but I do have an opinion. Scans are another one of those procedures that are very expensive, and unlikely to prove or disprove PANDAS, but if treatment for PANDAS does not seem to be working, I'd do the scans to check for/rule out structural problems.

[Worried_Dad]

Hi, pixiesmommy:

 

Don't want to discourage you... but if you're considering Dr. Chugani's PET scan research study in Detroit, it's not likely to help with insurance coverage, or even with convincing other skeptical local specialists. Our son participated in the study back in March 2008, and sure enough the scan showed inflammation in the basal ganglia (per Dr. C). However, since it's part of an ongoing research study, the results are "closed" and confidential until the study concludes. Dr. C was a great guy and generously offered to speak with our local docs about the results. Even though he's the director of ped neuro at Children's Hospital of MI, however, our local docs dismissed his findings and recommendations because he "hasn't published his data." Arggghhhh!!!

 

Sorry to be negative. It's just so frustrating when you can't get any local docs to even order tests, so you volunteer for research studies that are relevant, and the docs dismiss them anyway. We also participated in Dr. Cunningham's blood test research study - which showed anti-neuronal antibodies in our son's blood completely consistent with PANDAS (per Dr. Cunningham) - and she has published her results widely already. Still didn't convince the "local skeptics."

 

For us, at the stage we were at back in early 2008, it was a confirmation that the PANDAS diagnosis was the right one and that we were on the right track. So it gave us some peace of mind. Just didn't help much with convincing local docs or insurance co.

 

Hope you have better luck!

 

 

We went to get the bloodwork and they could not read Dr K's handwriting, so no bloodwork yet for us

 

Once we clarify what all he is ordering, I will list it here.

 

I'm still confused though about the ASO and Anti-DNAse B. If that does not show/prove anything, then why order it? Would it be for future comparisons?

 

Also, I'm confused about why some drs are seeming to treat w/steroids (in addition to using it for diagnostics) versus the IVIG. He said he had seen 5 days of steroids have a lasting effect for as long as 96 days. Is one more dangerous than another?

 

He said he was going to be in Germany next week because they are in the process of using a new diagnostic tool for PANDAS and he wants to learn about it. I wonder if he will start using something new when he returns.

 

I also talked to him about using a PET scan and participating in the study in Detroit, but he said a PET scans and/or MRIs are useless. I did reading about PET vs. MRI when looking at the basal ganglia and it sounds like apples vs. oranges. I wonder, even if he thinks it is useless (and maybe it is to him), if we should still have a PET done, and how that would impact any insurance coverage probs if it DOES show issues in the basal ganglia.

 

So many questions are swirling around in my mind....

[pandas2boys]

If these titers are elevated it is usually evidence of a recent strep infection, and yes, it can be used as a baseline measure for comparing future levels. The tricky thing is though, that if these titers are low it does NOT mean that there hasn't been a recent strep infection...I assume Dr. K knows this, but most doctors do not and misinterpret the lab results.

 

From Dr K's website -

 

(6) Significant elevation of AntiDNase B titer is common, but not necessarily present in every case. Negative AntiDNase B titer does not absolutely exclude the diagnosis of PANDAS.

[Buster]

Hi PixiesMommy,

 

Started a reply on the lingo here but asked Chemar to move this subtopic to it's own thread. Look here:

http://www.latitudes.org/forums/index.php?...ost&p=36261

 

 

 

Regards,

 

Buster

 

Sorry, sometimes I get lost with all the lingo as I am trying to absorb!! Forgive me for confusing the two and Thank you so much for clarifying!!

 

Dr K said the tests would tell him if she had had strep in the last YEAR though!!!