Dr K- one year post-IVIG checkup

[pixiesmommy]

One year checkup today w/Dr K for our post-IVIG done once on Sept 10-11, 2009.

 

He wrote Rx for bloodwork for all 4 of us for ASO/Anti-Dnase B titers, which we had done immediately after leaving his office.

 

Said he does not believe there is a significant correlation b/t Lyme and PANDAS and in his exp. 2 of 400 patients have come back positive for Lyme, so no tests order from him on that front. (We will probably pursue IgeneX on our own just to put our minds at ease, since we did live in the south and had tick bites, so that is a real possibility and would explain a lot about my own health as well.)

 

Keeping her on abx through Dec. to get past the current rampant strep season (2 in her class just today called in with strep!!) And then... we are on our own unless she exhibits significant PANDAS symptoms again.

[thereishope]

So it went well. That's great! I wish he had extended her scipt at least until the end if the school year, though or at until April since strep is still pretty strong even in March. Have you made any personal decisions about antibiotics after the Dr K script ends?

[ajcire]

I am confused. Dr. K has only had 2/400 patients with lyme? Just from posters here aren't there more than that? Does he not put faith in the igenex test and if not did he express why?

Edited September 14, 2010 by ajcire

[philamom]

Well, I told him my daughter's results 13 months post IVIG.

[ajcire]

Philamom, I'm not sure I understand what you mean by that. What was his response to your daughters results?

[philamom]

Philamom, I'm not sure I understand what you mean by that. What was his response to your daughters results?

I had a phone consult scheduled with him 13 months after her first ivig (she is currently doing ivig with Dr. B but I wanted to keep him in the loop as well). I cancelled when I received the positive lyme results, so I could figure out my next step. At the time, I informed him of the Igenex results but never heard back. I wanted to get his opinion on the Igenex testing, but could not afford the expense for that specific inquiry.

 

edit- I just re-read my post and wanted to add that no questions were asked in my email. I just simply stated "my daughter received a positive Igenex WB lyme result and at this time I need to cancel our appt, until further evaluation". The reason why I scheduled the appointment was to get his opinion on whether my daughter should or shouldn't be on proph abx. Once I received the lyme result, she was back on abx anyhow. Dr. K has been extremely helpful to us and always answered my emails!

Edited September 14, 2010 by philamom

[pixiesmommy]

He was just dismissive- not about the IgeneX test in specific, but about Lyme having anything to do with PANDAS symptoms in general. The feeling I got from him was that since IVIG had clearly worked to eliminated 95% of her PANDAS symptoms (his figure, not mine) then there was no reason to go searching any deeper, since clearly PANDAS is THE answer and we have received an effective treatment.

 

On one hand, I agree with him. Yes, we absolutely have seen amazing positive results from the IVIG, however, if there is something else lingering that can be tested for and treated, in order to bring her 100% back, then I don't understand why NOT to do it. The testing does no harm, and it has a specific goal in mind (ie- I'm not just running a gazillion blood tests in hope of finding a random answer and putting her through a potentially unnecessary medical ###### to do so.)

 

My opinion is that Dr K is a phenomenal PANDAS dr. PANDAS is what he diagnoses and treats- but that is the. end. of. story. I am the parent, the one who lives with the child, and while I am thankful every day for Dr K and all of the help and guidance he has given us, I am still going to pursue the things that he may not think are necessary or helpful, like NRT, chiropractic, dietary changes, and additional diagnoses and treatments, if and when I feel they are warranted. This has nothing to do with my opinion of him as a PANDAS dr. If he didn't have that narrow focus, then he would not be able to treat as many children as effectively and efficiently as he does. I would never ever discourage anyone from seeking out treatment from him.

 

However, like with any doctor, we are the parents and it is our job to question and continue to do the best we can for our kids. For me that does not end with IVIG and prophylactic abx.

 

Again, Lyme for us would explain so much- like why I have had so many rheumatic symptoms from such a young age, why DH started having similar symptoms when we met, and of course, the PANDAS symptoms that haven't completely cleared. The link to melatonin intrigues me, as I have an almost-3-yr-old daughter who is on melatonin because she cannot sleep without it, and is still up repeatedly during the night. So much in our family points to Lyme that I feel it would be foolish to let it drop. The next step is definitely the testing with a lyme specialist.

 

As far as continuing the abx- I won't do it alone, like ordering illicit abx or anything. I may move her to olive leaf extract or something, but we will definitely stay in the care of some sort of doctor or team of doctors. We plan to continue with NRT, try to find a homeopath who will treat the entire family, potentially seek out a DAN! doctor, and definitely find a lyme doctor (as soon as possible.)

 

We ran the ASOs/anti-Dnase B yesterday and Dr K said to call back in a week for those results. We'll treat whomever is the carrier, however best we are able, and hopefully he will give advice and work with our current family dr on that. We haven't ruled out going to an ENT to see if we have strep hiding out in sinuses, etc (Pixie has been checked previously and did not.) None of us but the toddler have tonsils, though all of us have adenoids other than DH.

 

There is definitely a lot to think about. March is definitely a rough time for us, but again, Dr K said we would only cut ties until/unless there was a PANDAS flare and then he would re-evaluate treatment again. I have no doubt that he would prescribe abx for us again in March if we were in crisis.

[ajcire]

I apologize if you mentioned this somewhere else already and I just missed it but what symptoms are you still seeing in your daughter?

[sf_mom]

You said it so well. Our family will be forever grateful to Dr. K too!!!

 

One thing I learn from our LLMD.... Is you need to test the mother first (especially if you are symptomatic) to investigate what might have been passed while pregnant. If the child got LD or a co-infection while in-utero it is very possible your child/children do not make antibodies because it doesn't recognize the bacteria as foreign. So, the standard antibody test might give you a false negative. If you understand it might be congenital LD then you can target DNA testing (most reliable) in children via the urine verses a blood draw that tests for antibodies.

 

So, for $260.00 you can have the basic Western Blot done through Igenex to determine your situation first.... rather than spend a lot of money testing your daughter 'initially'.

[JAG10]

We haven't ruled out going to an ENT to see if we have strep hiding out in sinuses, etc (Pixie has been checked previously and did not.) None of us but the toddler have tonsils, though all of us have adenoids other than DH.

 

What is the rationale behind removing the tonsils, but leaving the adenoids in???

[Suzan]

Again, Lyme for us would explain so much- like why I have had so many rheumatic symptoms from such a young age, why DH started having similar symptoms when we met, and of course, the PANDAS symptoms that haven't completely cleared. The link to melatonin intrigues me, as I have an almost-3-yr-old daughter who is on melatonin because she cannot sleep without it, and is still up repeatedly during the night. So much in our family points to Lyme that I feel it would be foolish to let it drop. The next step is definitely the testing with a lyme specialist.

 

Hi, I have a question about the melatonin, you said there is a link there to lyme? I am interested in hearing about that since my family (me included) can't go to sleep w/o melatonin. The more I learn about lyme, the more I am wondering if maybe that is my issue rather than my autoimmune issues (or in addition to). I just can't get over thinking if I had lyme, I should be way sicker. I just had many years of doing very well but I have been heading down hill the past few months.

 

Susan

[EAMom]

Again, Lyme for us would explain so much- like why I have had so many rheumatic symptoms from such a young age, why DH started having similar symptoms when we met, and of course, the PANDAS symptoms that haven't completely cleared. The link to melatonin intrigues me, as I have an almost-3-yr-old daughter who is on melatonin because she cannot sleep without it, and is still up repeatedly during the night. So much in our family points to Lyme that I feel it would be foolish to let it drop. The next step is definitely the testing with a lyme specialist.

 

Hi, I have a question about the melatonin, you said there is a link there to lyme? I am interested in hearing about that since my family (me included) can't go to sleep w/o melatonin. The more I learn about lyme, the more I am wondering if maybe that is my issue rather than my autoimmune issues (or in addition to). I just can't get over thinking if I had lyme, I should be way sicker. I just had many years of doing very well but I have been heading down hill the past few months.

 

Susan

 

I don't know lots about Lyme, but it seems that it is one of those diseases where some folks get really sick, and others not so sick. In "Cure Unknown" they also talk about "rash only" strains of Lyme. So, I suspect there is huge variability in how sick someone gets depending on the individual, what else the individual has going on health wise (co-infections, other problems), and the strain (or strains) of Lyme the person is infected with.

[EAMom]

Well said Pixies Mommy!

 

AND...I suppose if it turns out your family is Lyme positive, that answers the question about whether you'll stay on antibiotics (at least for a while!).

[pixiesmommy]

I don't know if I can explain the PANDAS symptoms that are still present. A lot of them are probably more "learned" at this point than actually triggered by infection; however, when we have an infection, we do see an increase.

 

Here are a few that come to mind:

-sensory processing issues

-extreme exhaustion, easy fatigue

-aches and pains, and not processing pain properly

-headaches that seem to coincide with exposure to strep/viruses

-cold sores in the mouth

-sore/raw inside of nose

-clumsiness/lack of coordination

-mild tics in hands/eyes

-VERY easily frustrated

-still needs rather strict routines and "hand holding" through unfamiliar territory

-memory issues, along with some... not sure if it's lying or just forgetfulness or...? (we called this manipulation when she was initially diagnosed with bipolar, and then the neuro thought it may be seizures, but it is neither)

-eye issues - repeatedly fails visual field tests but there is nothing physically wrong with eyes as far as neuro and opth. can tell

-some regression in handwriting, baby talk, etc occasionally that is not for play or intentional

 

 

I have no idea why the would leave adenoids- very weird, if you ask me.

 

Yes, EAmom- I was thinking the same thing about the abx!

 

Melatonin- I read a link that was posted on the board linking lack of melatonin to Lyme. I don't have any further info, but it is definitely intriguing!

 

I assume we will start with me for the Lyme tests- you are right in that it makes the most sense. Most of the doctors who are .. ahem.. intelligent... about autoimmune disease will ask a lot of questions about MY history as well as Pixie's, because of exactly that genetic pathway.

 

*We have emailed ILADS and called the LLMD number and can get no response from either. We'll keep trying, but I'm already frustrated! Why can't someone just pick up a stinking phone when you need them to!?

 

I'm dying for the titers to come back and might try to call Dr K tomorrow. The lab said it would be 2 days, but he said give it a week. I'm terribly impatient and want to get started with treatment if we have a carrier. I wonder how they determine who is the carrier if we are all high titers? I'm still slack in figuring out the technical/lab side of things....

[EAMom]

Keep us posted Pixies Mommy!

 

It'll be interesting to see what shows up on both the strep titers and Lyme tests.

 

Personally, if Lyme is all neg, I'd think about repeating IVIG, to see if you can get further improvement. It's interesting that Dr. K. feels only 1 IVIG (for most kids) is needed (he defines success as 75% improvement or greater within 3mo.) while other docs (Dr. Latimer, Dr. B.) recommend multiple IVIG's right off the bat. My feeling is that the "right" answer lies somewhere in between...1 may work for some kids, but others need 2 or more (and this should be decided on a case by case basis, with near 100% as the goal, not 75%....b/c 75% of really $hitty still isn't great.)