medical records show strep 19 times in 36 months!

[Kbossman1]

What is so weird to me is that I haven't been successful in convincing dd's pediatrician that she has PANDAS, he even has it written in her medical records that I questioned PANDAS back in 2008. Finally got her medical records yesterday....took 3 weeks to get them. In the last 36 months, from 10/2007 until 10/2010 she had confirmed strep throat 19 times.....and that's including all the times after her tonsils were removed in 2008. She was diagnosed with moderate to severe OCD in 2009. What is so hard for the dr's to understand about all this???!!!?????? She is the definition of pandas to me......so I don't understand why I've been begging for help for all this time, and no one will listen. We have our bloodwork results, we have our records, and we are on our way to see Dr. B on December 16th, hopefully to finally get some help with preventing her from picking up strep anymore!

What I wish I could understand is the link between pandas and lyme.......We had a tick bite in April this past year, and she got a rash on the bite 3 days later, just a hard red bump, but I took her to the dr for it, so we have the date and documentation. She has been complaining of not feeling well (headache, stomach ache, says everything hurts) since May this year. She frequently wakes me up at night to say that she doesn't feel good, so I don't believe that it's for attention.....I belive that she really doesnt' feel good. She was positive for IgM band 23, but no other bands present on the western blot ( labcorp) so I'm wondering if this mystery illness that the drs don't see is Lyme. What I wish I could figure out is the connection between why so many kids with pandas have Lyme.....does anyone have any ideas proven or not?????

[dabel]

I do not know a lot about Lyme yet. I am learning and it can be quite complicated. I do have one child that has it for sure with others that are suspect and we are waiting for test results. My son was in many times over years with complaints of joint pain, eye pain, etc. Now he is having central nervous system symptoms and it is frustrating that this was missed for so long! The testing through the clinic sucks! He has tested neg there twice. I recently read a thing posted on the Lyme forum that was written by Dr Ann Corson - pediatric lyme specialist - that only one species specific band needs to be present to demonstrate exposure to bb therefore confirming a clinical diagnosis of Lyme disease. The bands I noted are...18,23-25,31,34,39,83-93. The band you mentioned is one of these. There are many other mother's here that know much more than I about this since this part of our journey is new. I am sure some of these other parents will chime in as well but I just wanted to share this info as I found it helpful.

[EAMom]

Hmmm.

 

I wonder if these are 19 separate infections or 1 (or a few) infections that never really cleared.

 

What antibiotics were your dd on?

 

Also, I would be sure to check family members (throat cultures, even if there are no symptoms) as it is also possible your dd was clearing the strep but then getting reinfected from a carrier family member.

[Kbossman1]

Hmmm.

 

I wonder if these are 19 separate infections or 1 (or a few) infections that never really cleared.

 

What antibiotics were your dd on?

 

Also, I would be sure to check family members (throat cultures, even if there are no symptoms) as it is also possible your dd was clearing the strep but then getting reinfected from a carrier family member.

 

Well, here's the scary part.....I have four kids; ages 7,6,4, and 3. All four of them get strep....no symptoms, well, they don't have your normal high fever, no eating, miserable symptoms....they all 4 do have stinky breath, and some very strange behavior/ or whining, temper tantrums when step is around. (I know....I'm scared to death!!!) So far, only our oldest has presented with any OCD behaviors, and has been diagnosed with OCD at Duke in NC, but it's been very hard to get a dr to agree with me. Any time that any of the 4 kids has strep....I take the rest in. Then we usually end up back in with all 4 after meds to make sure that it's gone. I get the strep....but I'm miserable. My husband get it occasionally with symptoms, and sometimes w/out.....which is really confusing. Then there's my mother-in-law....who had it twice w/out symptoms, so now I make her go in each time they have strep.....and she doesn't like it, but I don't really care! It's made me look crazy in the eyes of most people that I care about.....I make our neighbors/friends take their kids in, and I babysit two kids during the week, each time we have strep....their mom takes them in too.

 

It's been ###### for the past couple of years.....going in to see if they have it, then going back to make sure that they don't. It's always been so confusing because sometimes it's gone.....then right back....no one knows. Now I feel like my family and friends all think that I'm crazy ....I'm always insisting that someone go to the dr....or taking my kids to the dr. I seem like the worlds most worry-some mom when it comes to sickness, and truth is.....if it weren't for strep throat, my four kids would be extremely healthy! Other than my oldest saying that everything hurts... all of the time. Ok, thanks for listening to the rambling. Let me know if anyone out there has any suggestions or theories about what with the PANDAS and Lyme together??

[Kbossman1]

Oh yeah, and we've used Zithromax, amox., augmentin, clarythromicin, cleocin, bicillan, Omnicef, and Penicillan.....

[KeithandElizabeth]

Hello:

 

Here is my take on the lyme/PANDAS question:

 

PANDAS and/or PITANDS represents neurological and/or psychological symptoms in response to strep, mycoplasma, and/or lyme (borrelia). There are probably additional bacterias and viruses that can lead to these same symptoms, but these three seem to be the most prevalent on this forum.

 

I think that it is critical to rule out lyme disease and mycoplasma because both of these bacterias lack a cell wall and can become chronic. Lyme morphs into three different shapes, including a cyst form that hides from antibiotics.

 

It is important to test for lyme via IGENEX because this private lab includes lyme specific bands, such as band 31 and 34, that the CDC took out of their lyme tests because of a lyme vaccination that was supposed to come to market.

 

Hope this helps!

 

Elizabeth

Edited November 30, 2010 by KeithandElizabeth

[kimballot]

I want to throw my two cents in the mix here... 19 strep throat infections in 36 months? I agree with EA mom that she may not have cleared it - either that or she is immune deficient or you have a carrier in the house (or a combination of all 3).

 

The lyme just adds to the mix and increases the likelihood of a reaction (as Elizabeth stated).

 

Have you seen a PANDAS or lyme doc? I would think a good immune work up (including mycoplasma and igenex lyme testing) would help you to understand what is going on. I do think there are lyme doctors who would not even need igenex to start treating, though - given her history and positive band.

 

You might want to post on the lyme board as I am sure folks there can give you even more direction.

[KeithandElizabeth]

i just wanted to add that my son had chronic strep 2 years ago and his tonsils are horribly crypted. At the very naive time in my life, I thought that maybe my son had a fantastic immune system because he continually had strep for a year and was never physically ill...... he just changed mentally and then we would give him antibiotics and then he would "come back" to us and then change again a few weeks later. The cycle continued until he no longer improved with antibiotics.

 

I agree with EAMom about testing the whole family for strep and I also think it is important to test for mycoplasma and lyme via IGENEX.

 

Elizabeth

Edited December 1, 2010 by KeithandElizabeth

[Kbossman1]

Thanks for the advice.....and my daughter sounds the same....chronic strep, and it seems that antibiotics are not as "magic" as they once were. We do have an appointment to see Dr. B in 2 weeks......I can't wait! We also have been to see 3 ent drs and an infectious disease dr in Chapel Hill, NC and got different opinions from each one....ughhh! Next Dr. B, and maybe an llmd....and who knows maybe we'll figure this out oneday.....and I'll keep crossing my fingers that my other 3 children don't start to show signs of OCD ever! I can't tell you how much this forum helps, just knowing that there are so many other parents out there going through the same thing.....and confirming what I already knew...which was that I'm smart, NOT crazy! LOL