3wk flare DX Sept 12 - lab question

[kleek3]

Hi All!

 

Apologies in advance for neglecting the boards. It seems as if things were going well and I forgot where we started with this PANDAS dx. These boards got me through a year and here I am again with a similar screen name as before. (I can't seem to get Admin to reset my kleek3 username;).

 

DS5 now has been in a 3 week flare now. We have doctored with T since Sept12. I love him! He is an amazing man, but I can seem to get a response to emails. I know how busy he is and I'm taking matters into my own hands this week. I reprinted his lab slip and had our local Ped re-order the sleu of regular labs Dr. T has written for us.

 

My problem is that I'm not sure our Ped knows how to read them or what to do once we see her. I feel lost, I feel like I'm playing the doctor again - something that I'm certainly not. The MycoP has been something that we have never cleared on a lab slip.

 

I have heard some of you ask in the past about Lyme. How do you know when to presue Lyme? DS5 had labs I believe Western Blot and it was negative a year ago. We did the genetic testing with Dr. T and have been giving heavy doses of LCarnitine, B-12, Iron and a multi vitimin (along with prophylactic abx). We have done very well until about a month ago when the tics, bed wetting and emotional liability has reared it's ugly head again.

 

If we still have the MycoP, what is the next step? Any thoughts would be greatly appreciated.

 

Kristin

 

[Dedee]

I'm not sure what you meant that you still have the Myco P. Do you mean the titers are still positive? In regards to the negative Lyme western blot, just because the test says it is negative does not meant that it is negative. You need to do some research and educate yourself on Lyme disease. You can't take your Doctor's word when it comes to Lyme. Few Doctor's (including Dr. T) are truly trained in the proper treatment of Lyme disease. You need to see an LLMD (Lyme Literate MD). Lyme is a clinical diagnosis and can not be ruled in or out based strictly on a lab result. Lyme tests have a very high false negative result. You must see an LLMD in order to rule out Lyme. Also, if you are dealing with Mycoplasma and are having difficulty getting rid of it you should be aware that it can be a co-infection of lyme. LLMD's are trained to treat Myco. Both my Son and Daughter had Myco for a long time and we could not get rid of it until we started seeing an LLMD. They know how to deal with these stealth pathogens. Myco is very hard to completely eradicate. It takes months to years of the right combination of antibiotics. You need to find the right physician asap. At a minimum, see if you can get a prescription from your ped for some biaxin while you find the right doctor. This will hold things off (hopefully), until you can find and get into a good LLMD. Best of luck.

 

Dedee

[kleek3]

Dedee,

 

Thank you for the response. I got his labs today and have finally reached Dr. T for an appt Wednesday. I have to be honest, I'm not a doctor - sometimes I get so overwhelmed with the amount of info it takes to attempt to solve this puzzle. I will ask him about the myco p and the igg igm piece still isn't clear either. I took a 5 month break because we were doing so well and I feel lost all over again. I have been reading about the Mycop being a co infection of Lyme. AIn the beginning of this journey we tested once and not again.

 

I know this for sure. He is in a flare, my entire family is trying so hard to cope with the craziness Pandas has brought to our home. I have faith and believe we will find a better place not only for my son, for all of our children I will reply once I hear from T.

 

KK

[kleek3]

Good Morning!

 

Update - After going over the labs DS5 still has high levels of Myco Plasma in his blood. We had a follow up with T and decided to switch him to Biaxin for 10 days to see if it calmed the flare. It has not. We also decided to move forward with the IVIG.

 

Question for you all...We will have our GP administer the IVIG locally so that we can stay home while he is getting treatment. Our GP (Ped) will use our hospitals infusion center. Dr. T said that he will do the work up and that DS5's Ped will reach out to BCBS about covering the procedure on insurance vs. paying for it outright. Have any of you gone this route? I'm hoping to hear some of your experience and hope. There is a small part of me that says travel to NJ and have T do the procedure, the other side of me says put it in Ped hands bc it will happen in a much more timely manner. Thoughts please?

 

KK

[T_Anna]

We have done 5 HD IVIGs all at home through walgreens infusion. The most important thing is a good infusion nurse (infusion center should be ideal). I think you want to be sure there are no active infections.

 

T.Anna

[JoyBop]

If it were me if rather not have to travel. Also, if you ever needed it done again everything would be in place. What's rate do you live in? Would your insurance even cover a procedure out of state? Honestly, if you had a great dr like Dr T guiding and educating your child's local doctor, that is gold!!

[kleek3]

We live in NY State and I guess another question would be am I to contact BCBS to see about coverage or is the Ped? Also on t_annas thought - I don't believe we have ever completely cleared infections.

[JoyBop]

You should call your insurance co and ask about coverage for IVIG, but be certain not to mention PANDAS. many insurance company's outlaw this procedure with any mention if it. Ask them to email you their policy for IVIG coverage. You don't have to tell them anymore than your physician mentioned that your child might be needing it. You don't want to give them any red flags.

Do you have an HMO or PPO? Did bc cover your visits to dr t? If you have an HMO you are stuck in your network unless you can win an appeal. If you have a PPO you may be in luck, but again, it all depends in your plan. Another question for your insurance co. Do I have coverage with a participating doc in NJ? If dr t is not and he does it at his office or surgical center it may not be covered. Its very complicated.

The risk in having your ped order it without knowing everything I'm suggesting you know upfront, you may be banned from the IVIG when they hear about pandas. Every plan if different and some DO cover it. You want to know that before your dr goes for a pre auth. I work in a dr office and deal with these issues a lot, but every state is different.

Where I live, insurance plans specifically exclude pans/pandas and any experimental treatment with IVIG. My plan goes so far as to exclude anything post infectious. (Encephilitis). If your company allows coverage for post infectious encephalitis that may be the way to go. If not, your doc will have to be a little more creative.

Some have no problem getting coverage but for most of us this isn't the case

 

I have heard the code for autoimmune encephalitis of an unknown cause with mental status changes has been successful for some.

 

Bottom line: get the coverage policy, it might even be listed online. Google it for your specific plan.

Find out if you can have a non emergent procedure out if state. Find out the facility it would be done at with either doc. If you find that it had to be done by your ped, have him email or call dr t to get advise on how to bill. I'm sure he's the master!!

If you have any specific questions pertaining to insurance feel free to ask.

[kleek3]

Good Morning,

 

After 2+ weeks now the med change to Biaxin is not cutting it. I reached out to T again to see where we stand with the IVIG. His office says we are in the works. They are very busy and basically be patient. In the meantime, my DS5 has injured my girlfriends daughter, point blank making a very bad choice with absolutely NO sense of consequence to his behavior. His aggression towards others is a challenge to say the least. This boy is in a flare that I cant seem to help with the med change. Our last hope is the IVIG.

 

With that being said, I asked our Ped to refer us to an infectious disease dr to do more testing for Lyme - just to be sure we have turned over EVERY stone. This Dr called her back and with some explaining to this new doc, his response was that he knew exactly who the specialist was in NJ and that he would not see our child. That he suggests referring him to another Neurologist at Strong in NY.

 

I'm not sure if this doc was outright saying PANDAS isn't "real", but that was the impression I got from our Ped. I know that more information is better. However, how many Doctors do I need to bring this child to before we get some help for this boy? I know that many of you have seen numerous doctors. I guess I just feel frustrated with the treatment we are getting now. We have a scheduled appt. with Dr. B in April. In the meantime, do we wait and continue with a med that isn't working at all? I feel so frustrated and that his care is beyond my control this minute.

 

I may just be venting, I know others have been thru the same and then some. I guess I just looking for some guidance. I need more communication, I need to have response to questions. I need open lines of communication and guidance. I am not a doctor. I love Dr. T. I'm not taking away from what and where he has gotten us. It's just not enough at this point and I'm feeling alone. What do we do? What next? Any suggestions from you other warriors would be greatly appreciated!

 

KK

[Thesuzie]

Dd12 just had ivig ordered by dr T on Monday and Tuesday. We also live in NY and used a local infusion company. I have to admit, it took daily phone calls to get all of the orders completed and corrected and it was pushed back a few days. However, from what I have read on this forum, he covered all bases with the dosing and medication and the whole experience ran smoothly. The nurses at coram infusion were great. On weds, she had a killer headache, I had read about prednisone and had some left over from a recent respiratory illness. I called dr t and he approved the same dose. So, my only suggestions would be to follow up with phone calls to him until you have what you need and to request an rx for prednisone in advance.

 

Also, I have bcbs and it was covered. I called my employer (union) and was connected to a bcbs rep who contacted dr t. The claim was submitted by coram with a dx of immunodeficiency. My dd is 74lbs, they quoted me $8282, as I had planned to pay and not wait any longer.

 

You also mentioned waiting for dr. B. I was very frustrated by the experience. Although he expressed his plan for her care, nothing happened and over a 6 month period, her health declined rapidly. I really don't want to project any negativity, my mistake was my ignorance because it took me way too long to realize I needed another plan. When I contacted dr t, I was desperate. But that was a good decision, within 4 weeks of our initial appt, we have significant progress!

[kleek3]

The suzie,

 

I so needed to hear just exactly that statement this morning! Thank you for that information. Would you mind if I PM you to get dx codes and if I have any other questions? We are exactly there...desperation. I will tie a knot and hang on! Thank you again!

 

KK