First round of lab results in.......

[Dedee]

So we finally got the complete report on all the lab results yesterday. We had gotten partial results a few weeks ago when the office called to say her strep titers were elevated and that was when we gave the Bicillin injection. I wasn't really even sure what all she had drawn. So long story shorter, her immune pannel was normal with IgG and IgA both within normal limits. Biggest things that stood out of everything was that her inflammatory pannel was elevated indicating a long term inflammatory process. Very low Vitamin C & D levels. She has yeast in her gut. Also has 4+ Strep in her gut. The differential on her white count shows neutrophils very high and lymps low. She also had that when they did pre surgery lab work in December for her hernia surgery. Her albumin level was slightly elevated, and her Serine levels were low. Other things she tested for were CMV, Epstein Barr, Methylmalonic Acid, Fecal parasites, Digestion and absorption levels all were normal. I was disappointed that she didn't test for Mycoplasma P. or Lyme. I will have her test for those with the next draw.

 

Her interpretation was that she most likely has chronic encephalopathy (elevated inflammatory pannel). This is also supported by the fact that she had improvement with her steriod infusion. We discussed the immune system and she believes it is very likely she has what they call chronic variable immune deficiency disorder (?). Although her IgG and IgA levels are normal now, if you follow levels consistently over a period of time what you see is that there are times when they remain normal then they drop for several months then back to normal. She said we have to follow and start building a case for IVIG. She wants to do several steriod infusions about every two weeks apart. We would draw blood before each infusion (she would be stuck anyway). Then document her response to the steriods and watch immune markers, inflammatory markers and a few other things. If response is positive then hopefully insurance will cover. This is when I started to cry. I told her I didn't know how long my family could make it while we "built our case". She said maybe by us going to see Dr. Murphy next week we could get extra support from her and if not we could try some phone consults or something.

 

I guess I was just hoping for that big neon sign that says this is it and here is what you do. You would think I would know better than that by now. This isn't my first time around the PANDAS block, but I have higher expectations now because I think since there is more research now we should be able to kick this quicker. Ok, So I have my reality hat back on.

 

I think my biggest fear now is that the Cunningham test that we sent off will come back normal. OMG, I would die. I almost wish I hadn't done it. Of course it's not that I WANT my child to have PANDAS but I just can't take anymore ambiguity right now. Gosh, I know I am rambling. I am so confused. I know we need to do more follow up lab. What do you guys think? And how in the ###### am I supposed to get my family and my precious dd through this wait?

 

Dedee

Edited March 3, 2011 by Dedee

[eljomom]

HI Dedee-

I am sorry you are feeling the way you are---nothing definitive--but I can relate. I will say, even with Cunningham results being high, very high in fact, we are NO further along here with my daughter. Pandas doc is, in my opinion, passing the buck, sending us to I.D. doc, who did NOTHING for us...all because my dd still functions. "Don't count the tics as indicator"--well, they are! And theres' still ocd, etc. too, just not debilitating. So I wouldn't worry so much bout the Cunningham, as even the pandas docs (well, mine at least) aren't treating just based on them.

 

I am envious of all the lab work your doctor ordered....can I ask what kind of doc you are seeing that ordered all that? Also, what test showed the inflammatory markers? Do you know what the panel is called? Also, very intersting that your doc (if mainstream medical) ran stool tests for gut....wish I could find someone to do this stuff!

 

Hoping your apt. with Dr. Murphy is productive.

[Dedee]

We see the Nurse Practioner in an Integrative Medicine practice. She is very compassionate and knows more about PANDAS than the average doctor. She treats Autism and has treated some PANDAS. I wouldn't say she is an "expert" but there aren't very many of those around. She is more than willing to work with any of the "big guys" as a resource, so I think she will be a big help for us. I have sent her several research articles and she has been very appreciative. Still, as I have said before, it's great to go to a doctor who teaches ME something instead of the other way around. Anyway, I guess we will get that next week. But this NP says not to worry, we will find the right person to lead this journey and we will get where we need to be. That's helpful. I just need to be more patient I guess.

 

So the inflammatory markers ar a high Quinolinic Acid and 5-HIAA Ratio in Urine, and then blood sample was a high Sed rate, and she said the continued high neutrophils show the immune system trying to fight off chronic illness.

 

So what were your Cunningham results? And who is the PANDAS doctor who says your daughter is "debilitated" enough? Can you find another doctor? I mean who is he to say she isn't debilitated? You are her Mother. You know her best. If your perception and your daughters perception is that she is debilitated, then she is. It isn't his world you are living in. He doesn't live with you and experience what you do. I say throw HIM out with the dish water. I'm on a little bit of a soap box today. I just hate for someone to try to tell you what you are experiencing. Huh?? I'm in a crisis but I'm not crazy. Ok, I'm going to stop now.

 

Dedee

[SSS]

Hi, I know it's so overwhelming.

I just wanted to add something:

There is a VERY Pandas literate woman on the yahoo groups- she is not on this board.

She's rather 'famous' for always posting about PANDAS, her son has it, LOTS of parents email her about PANDAS, etc.

She ALWAYS says:

If the stool test comes back high #4 for strep, you have PANDAS. She says she has never seen a non PANDAS kid come back with a level 4. To her, that means PANDAS.

Just an opinion.

Take care, sending PV's---

(and waiting for our CamK results was pure torture.)

Edited March 3, 2011 by S & S

[P_Mom]

Dedee...was she sick at all recently with anything? I mean, before the draw?

Edited March 3, 2011 by P.Mom

[Dedee]

She had a upper respiratory infection in November / Dec. I think these labs were drawn in Feb. She had a cold recently, but that was after the draw.

[T_Mom]

S+S--can you provide the link to the woman you mentioned, or the Yahoo group? I have never heard of this--thanks.

[SSS]

Okay, I'm not saying she is the guru, know it all of PANDAS, she's a Mom just like us, in the trenches. She's been around a long time, healing her kids and herself. She mentions PANDAS on other yahoo boards (and on the yahoo PANDAS board) quite a bit, and frankly, if it hadn't been for her putting a bug in my ear, I would probably never be where I am now.

The group is:

 

http://health.groups.yahoo.com/group/pandas_autism/?yguid=410291249

 

Don't let the word autism throw you (we don't have autism, but sure thought we were somewhere on the spectrum for a long time.)

It does not have a terribly big membership, and probably lots of cross-over from here to there- but, it's always good to find our kin. Lyme is also discussed there.

[SSS]

By the way, I think I posted my own personal link. So don't spam me or get me in trouble ;-)

It is easy to sign up for yourself.

Thanks.