Tuesday, July 6, 2010

Testing Your Baby for Lyme

So you've devoted the past nine months to making sure you do everything in your power to keep your baby Lyme free. Safe antibiotics throughout the pregnancy, lots of vitamins and approved supplements, extra rest, but mostly prayers and crossed fingers because you know there's still so much unknown about the disease, so all you can do is hope for the best.

I'm not one to offer a strong opinion here, as I'm aware that everyone's Lyme journey is different, but I will break my rule and urge you to do one thing: Test that little babe as soon as he or she comes out. Even if the tests aren't always accurate, there's a chance you might catch those little buggers before Lyme takes hold for the long run. You've got nothing to lose but some money, and it will cost you a hell of a lot more to treat than it will to prevent.

Prior to last week, I had no idea about where to go or what to do in terms of testing once the baby is actually born.

As usual, number one thing to do is make sure all of your doctors are communicating about your progress and treatment course (even if communicating means you personally deliver updated information regarding your status and charts).

It took a little bit of going back and forth between OBGYN and LLMD, but I came across the following information
(Keep in mind, there are probably a bunch of different ways to handle testing, and your doc might offer something different. Please share if that's the case. This is just one option):

IGeneX, the same super-awesome lab that does all of our adult Lyme testing out in CA, also offers cord blood testing for infants. It's not something I've seen on the main site, but when I contacted customer service via email, they promptly responded and gave me the following information:

* The blood testing they do comes from the cord blood and is collected painlessly and immediately after birth

*You can request to have a test kit sent to your house (no doctor order necessary--you can do it yourself) by emailing customer service or calling them

*You'll want to order the test kit a bit early (maybe a month or so? You never know if junior is going to show up unexpectedly)

*For reference, the test number to request is #477

*There is no immediate charge. They will send the test directly to your house. You will enter your credit card number on the form that goes along with the blood sample to be sent in, and you'll be charged once Igenex receives the sample

*The cost of the test is $235 (A hell of a lot less than what I expected/compared to adult testing, so I'm wondering if it's not as extensive as other tests. Sorry, don't have any info about that yet.)

*Whomever delivers your baby will know in advance (have this conversation earlier than later!) to collect the cord blood in your kit

*I'm not exactly sure how blood-sending works. Common sense tells me you can't legally leave the hospital with vials of blood, so I'm assuming the hospital staff will send it out to IGeneX. Again, make sure your delivering doctor knows this in advance

*Results are sent to your home. It's up to you to report the findings back to your LLMD

*If there aren't any spirochetes found in the cord blood, chances are, the antibiotics worked! If they do find traces, obviously, whatever goes through that cord goes to baby. I hope none of us have to experience that, but if it happens, it's not necessarily the nasty, lingering, chronic Lyme that we have. My LLMD said that if it's caught early like this, we'd just put our little guy on a baby dose of antibiotics

There's always the possibility that the baby will test negative but will display Lyme symptoms later on down the road (my LLMD recommends testing the baby again a few months after birth, just to be safe), but let's stay positive for the time being.

It's good that we're not in the dark about our own disease, and we know what to look for. As you probably know already, some symptoms can be sneaky, and a two-year-old isn't going to be able to say, "Mommy, I have vertigo, fifth cranial nerve swelling, and some neuropathy!" In addition, keep an eye out for unexplained pain, developmental and speech delays, signs of Autism, and neurological symptoms.

Again, I do have faith that since we know the drill and we know what we're treating, we won't have to become the horror stories we sometimes read about. It's all about being proactive and staying educated.

I will post more info on testing as I get it. In the meantime, take care, and keep cool (it was over 100 degrees here today! No one wants a cooked baby. Or a melted mommy!)


  1. Thanks so much for posting this, great information!! Do you mind me linking or posting this on my blog? I know a phew lymies that want to become pregnant and I hope I will be able to in the future.

  2. Thanks, Julie! I'd love it if you shared this on your blog or with friends! It's been hard finding info on the subject, so whenever I come across something I want to share it with as many people as I can. :)

  3. It's wonderful that you have been able to get this information and know exactly how to handle this when the time comes. With so many unknowns, to have a plan in place sounds very reassuring -- and empowering.

    I realize nothing is definite, but this just feels like very good news.

  4. thank you so much for this. i know you posted it a while ago but it answered so many things for me. i was just diagnosed and am 7 1/2 months pregnant. totally "lost" at the moment but your blog is really helping me :-)

  5. Thanks for reading everyone! k, congrats on the pregnancy and the diagnosis. Now you can take the necessary steps toward getting better! Please email me if you have questions or just want to talk. There's a lot to take in with the initial Lyme diagnosis--finding out while pregnant is even harder! I can't imagine how overwhelmed you must feel. You'll get through this!