I have a question about Dr. K.

[Chemar]

thanks for reassuring parents on that side of it ajcire. that has always been my understanding, that it is still research but showing encouraging results and providing an additional piece of valuable information in the overall case history of the patient

 

 

If I remember from when I did the test it was pretty clear that it was not a diagnostic test as of yet. I see many people encouraging people to have the test done but I don't think anyone can say it is a reliable indicator of PANDAS. I did the test on my ds and for me it was something that was a little concrete that could possibly be a piece of the puzzle but certainly not a determining factor. There was nothing in anything from Dr. Cunningham that led me to believe this could currently be considered a diagnostic tool but it showed me that my son's results were consistent with others who have PANDAS symptoms. I sure hope one day it proves to be a reliable medical tool.

[sf_mom]

It is only one piece of the puzzle 'the Cunningham test'. Some Dr.'s request it to be done that are currently treating PANDAS and other Dr's that are not that familiar with PANDAS are treating as a result of that test. I know at Stanford University here in CA they are treating some kids based on CAM Kinase results and clinical picture. I was only giving Dr. Ks perspective so TRG could save the $400 or felt under pressure to have it done in advance of consultation. If you have them great, if not no worries..... He truly understands the disease, clinical presentation and reviews the patients history in detail. He is currently working with the NIMH/Yale to better define parameters of the upcoming IVIG trail in relationship to PANDAS and the Cunningham test will be part of the trail, as well as some other testing being considered: spinal taps and exotoxins in the stomach. He is also getting ready to publish his findings and has a research individual that I believe is a Dr. at his offices (some of you may have met her) documenting and formalizing his case history..... I believe her salary is paid for by the NIMH. They are hopeful the Cunningham test will be a reliable tool in the future also.

 

Hopefully, that helps.

 

 

 

 

If I remember from when I did the test it was pretty clear that it was not a diagnostic test as of yet. I see many people encouraging people to have the test done but I don't think anyone can say it is a reliable indicator of PANDAS. I did the test on my ds and for me it was something that was a little concrete that could possibly be a piece of the puzzle but certainly not a determining factor. There was nothing in anything from Dr. Cunningham that led me to believe this could currently be considered a diagnostic tool but it showed me that my son's results were consistent with others who have PANDAS symptoms. I sure hope one day it proves to be a reliable medical tool.

 

 

 

Specifically, the Cunningham test, he has similar thoughts and does not put a tremendous amount of 'weight' into the results. He considers them to still be inconclusive and needs further research.

 

I am hearing from some parents who are very alarmed by this, as they say they were urged by some members here on the forum that they should have the Cunningham/CamKinase testing done as it was the only "reliable" indicator of PANDAS.

As it is a costly test, they are now very concerned that they have both wasted their money as well as not received reliable test results

 

Could we get some clarification from both sides of this issue please? as understandably some people are now confused

[Chemar]

thanks for that clarification as well SF Mom which will hopefully also reassure those who are confused on this

[LNN]

We also understood that the test was not a diagnostic tool but rather a strong piece of evidence that we were on the right trail. For us, it gave us a numeric report that we could use to show doctors that something abnormal was happening. Together with our clinical history, it became a very strong piece of evidence. So for parents who are trying to compile evidence, I do recommend the test. Yes it's costly, but it's comparable to the cost of an office visit with a neurologist and its far less expensive than a neuropsych evaluation or developmental pediatric eval. So for some cases, the Cunningham test may be the best way to allocate money if it gets you further along the diagnostic trail than an inconclusive physical exam by a doubting doctor. So long as its understood to be a peak under the hood rather than a definitive answer (which is also all that a physical exam is as well)

[sf_mom]

Again, extremely helpful to have the CAM Kinase results and paper in hand when talking with Dr.s that are not that familiar with PANDAs. Stanford University wanted me to have them prior to appointment, they value the results highly and are currently studying T and B cells in relationship to auto-immune.

 

thanks for that clarification as well SF Mom which will hopefully also reassure those who are confused on this

[Chemar]

thanks for that clarification LLM

 

as an aside, it is a long time since we were at the developmental pediatrician and neuropsychs, but do they cost more than $400 nowadays? My understanding is that is the cost of the CamKinase test.

 

 

We also understood that the test was not a diagnostic tool but rather a strong piece of evidence that we were on the right trail. For us, it gave us a numeric report that we could use to show doctors that something abnormal was happening. Together with our clinical history, it became a very strong piece of evidence. So for parents who are trying to compile evidence, I do recommend the test. Yes it's costly, but it's comparable to the cost of an office visit with a neurologist and its far less expensive than a neuropsych evaluation or developmental pediatric eval. So for some cases, the Cunningham test may be the best way to allocate money if it gets you further along the diagnostic trail than an inconclusive physical exam by a doubting doctor. So long as its understood to be a peak under the hood rather than a definitive answer (which is also all that a physical exam is as well)

[sf_mom]

To see an immunologist at Stanford Children's it was $600 to $700 for the visit and tests $3,800 per child...... not all covered by insurance and they still wanted to run more tests. Plus, I had to have Cunningham results and they wanted to revaccinate.

 

thanks for that clarification LLM

 

as an aside, it is a long time since we were at the developmental pediatrician and neuropsychs, but do they cost more than $400 nowadays? My understanding is that is the cost of the CamKinase test.

 

 

We also understood that the test was not a diagnostic tool but rather a strong piece of evidence that we were on the right trail. For us, it gave us a numeric report that we could use to show doctors that something abnormal was happening. Together with our clinical history, it became a very strong piece of evidence. So for parents who are trying to compile evidence, I do recommend the test. Yes it's costly, but it's comparable to the cost of an office visit with a neurologist and its far less expensive than a neuropsych evaluation or developmental pediatric eval. So for some cases, the Cunningham test may be the best way to allocate money if it gets you further along the diagnostic trail than an inconclusive physical exam by a doubting doctor. So long as its understood to be a peak under the hood rather than a definitive answer (which is also all that a physical exam is as well)

[Chemar]

yikes!!!! and I thought our costs were expensive back when we were having all my son's testing done

 

what on earth are parents doing who are uninsured or underinsured and lacking financial resources to help their kids

 

I know we would have sold our house and everything we own to help our son back when he was in crisis! but it really troubles me how many kids are not able to get help (whether for PANDAS or any illness) because of these high costs.

 

all the more need IMHO for real and meaningful healthcare reform that especially takes care of kids!

 

anyway dont want to go off at a tangent but I am truly shocked by that cost!

[LNN]

anyway dont want to go off at a tangent but I am truly shocked by that cost!

 

yeah, won't go there. In new england, it's a 4-6 month wait for a neuropsych eval, $2000-$3500 paid in advance, and our Pandas doc told us don't do it - they will certainly find delays and issues with your child - the basal ganglia is injured. But they won't be able to tell if its caused by Pandas. So get your child better first, then decide if there's anything left to investigate.

 

I have a mom friend who's waited months for an appt with Dr N from the book and its $1200 for a 2 day workup, plus labs, paid up front. So you can see why the Cunningham test starts to look like a good deal.

 

Pex is $23K if insurance won't cover it, IVIG $10K. But heaven forbid we give our kids antibiotics (all of my local pharmacies fill amox prescriptions for FREE). Things that make your stomach turn and blood boil... These are our children for goodness sake.

[thereishope]

My son sees a developmental ped now. The cost isn't much more than a regular ped. It was slightly over $100 for a visit (not a well child visit).

 

The first visit as a new patient may be higher a is the case with all doctors.

[thereishope]

Oh, I should add, if you are in need of a specialist, do try to look into hospitals that are in your county if money is an issue. Most children's hopsitals will offer financial help. They will either give you a payment plan, a discount, or (depending on income and size of family) no charge at all....If it billed through the hospital.

[sf_mom]

The only saving grace in all of this..... is it is a direct tax deduction if the cost are high enough. We've more than surpassed the amount for 2009. Stanford was even repeating tests I had preformed a month earlier. That is when I stopped and decided to save the money for IVIG if my twins should require it in the future.

 

 

 

anyway dont want to go off at a tangent but I am truly shocked by that cost!

 

yeah, won't go there. In new england, it's a 4-6 month wait for a neuropsych eval, $2000-$3500 paid in advance, and our Pandas doc told us don't do it - they will certainly find delays and issues with your child - the basal ganglia is injured. But they won't be able to tell if its caused by Pandas. So get your child better first, then decide if there's anything left to investigate.

 

I have a mom friend who's waited months for an appt with Dr N from the book and its $1200 for a 2 day workup, plus labs, paid up front. So you can see why the Cunningham test starts to look like a good deal.

 

Pex is $23K if insurance won't cover it, IVIG $10K. But heaven forbid we give our kids antibiotics (all of my local pharmacies fill amox prescriptions for FREE). Things that make your stomach turn and blood boil... These are our children for goodness sake.

[Chemar]

My son sees a developmental ped now. The cost isn't much more than a regular ped. It was slightly over $100 for a visit (not a well child visit).

 

The first visit as a new patient may be higher a is the case with all doctors.

 

 

Oh, I should add, if you are in need of a specialist, do try to look into hospitals that are in your county if money is an issue. Most children's hopsitals will offer financial help. They will either give you a payment plan, a discount, or (depending on income and size of family) no charge at all....If it billed through the hospital.

 

thanks for posting that Vickie

 

yes, our developmental pediatrician payments were more in that area

 

and yes, county health departments are the way to go when income is low and no other financial resources

 

some states also have special healthcare plans for lower income families who are above the medicaid threashold. here in Florida it is called KidCare and parents pay on a sliding scale based on income

 

unfortunately, many people dont even know about it and not all doctors take it

[thereishope]

A lot of people don't realize that the incomes scales for financial assistance through a hospital are rather high. Well, I guess "high" is in the eye of the beholder. I refered to going to one in your county because you are only eligible for the discount if you live in the county. I will take my area for example. I live in Cincinnati. At Cincinnati Children's Hospital if you live in Hamilton county and you fit into their brackets, you can get discounted or free care, even if you have yor own health insurance and you do not need to be getting government assistance. And it's not only for the poor of the poor. No matter what, I say apply for help if you need it. You can apply for that financial help prior to the appt, but the acceptance is good for only 3 months then you apply again. People feel odd at first when you fill out a form for help, but when that money could go to my family rather than med bills, I learned quickly to just apply and see what happens.

 

With PANDAS, we incurred a lot of bills due to bad insurance. I used that financial assistance to help pay for the neurologist, ENT, t and a surgery, and I believe the psychiatrist. Again, it's only when the bill is through the hospital. All ped and reg dr doctor bills, I pay 100% for. When someone in my house has strep, I incur over $500 of med bills to just get strep tests for 5 people! It's ridiculous.

[reactive]

My son sees a developmental ped now. The cost isn't much more than a regular ped. It was slightly over $100 for a visit (not a well child visit).

 

The first visit as a new patient may be higher a is the case with all doctors.

 

 

Oh, I should add, if you are in need of a specialist, do try to look into hospitals that are in your county if money is an issue. Most children's hopsitals will offer financial help. They will either give you a payment plan, a discount, or (depending on income and size of family) no charge at all....If it billed through the hospital.

thanks for posting that Vickie

 

yes, our developmental pediatrician payments were more in that area

 

and yes, county health departments are the way to go when income is low and no other financial resources

 

some states also have special healthcare plans for lower income families who are above the medicaid threashold. here in Florida it is called KidCare and parents pay on a sliding scale based on income

 

unfortunately, many people dont even know about it and not all doctors take it

I have pretty good insurance, but we get denied for anything that smells of "developmental delay" and have to pay ourselves. My son has had to see our PCP four times, an allergist, and neurologist since New Years. Just yesterday he had to have a visit with the ENT. Before X mas he saw developmetal peds and had a speech eval.

 

Breakdown for visits in last 2 months alone:

PCP visits $150 each X4 so $600

Allergist : $300

Neurologist: $377 (he spent 20 min with us and gave us a rx for risperdal that was not needed or wanted)

Speech eval: $648

Developmental ped $171

ENT visit was yesterday, don't know the cost

Also, allergist ordered many many blood tests and did back allergy testing, not sure yet of those costs

Also, we did sinus Xray 2 weeks ago to confirm sinus problem that won't go away

He is on round four of antibiotic currently

He also has other prescriptions

 

Since my insurance is pretty good, I have $15 copay to PCP and $25 to specialists. I don't have to pay for any tests.

The developmental ped $171 was denied, but to me that was a good deal as he told me not to start weekly speech therapy on my ds that would have cost us $80 per week plus our time.

 

Just giving an example how how things can quickly add up. Plus, my other nonpandas ds5 had to go to the ER last week; he had croup but began to have trouble breathing. We almost called 911 but got him to the ER, where he had a breathing treatment and Decadron. I'm sure that will be pretty expensive, but will gladly pay my $50 ER copay...the kid was in respiratory distress...hot steam and taking outside did not help...

 

And...as I've mentioned before my ds9 who is probable PANDAS is mild compared to other stories I have seen.

The hard part is, though, that until this all gets "hashed out" PANDAS or not, exists or not, people like me and people like many others with more severe kids just have to keep searching. I did not even set out on this PANDAS path again until this past December when I found pandasnetwork.org. This is where I learned so MANY of my sons issues could be PANDAS.

 

Thanks for letting me vent a little...