Symptoms of Lyme Disease in Babies

Our visit with the pediatric Lyme specialist went well--much better than we'd expected.

"Your baby doesn't look at all like a Lyme baby."

Best thing I'd heard in ages, but of course, my immediate response was, "Well, what does a Lyme baby look like?"

Here are a few helpful things I learned during our appointment, including some signs to watch out for after your baby is born (Keep in mind that this is just another opinion among many--each doctor has a different take on the Lyme transmission subject. This particular doctor is considered the best for kids, and I genuinely liked him and what he had to say):

- This LLMD has seen about 400 newborns, half ended up having Lyme, half were fine. Most of the sick babies came from mothers who didn't know they had Lyme during pregnancy and hadn't been treated with antibiotics

-If a mother is on one antibiotic during pregnancy, she has a 50/50 shot of passing on the disease; If she's on two antibiotics throughout, Lyme transmission is pretty much unheard of

-There are other ways to test your baby in addition to cord blood testing. The placenta can be tested, foreskin on a boy, and urine samples

-Positive Lyme test results don't necessarily mean your baby is infected. IGeneX tests look for DNA fragments from the bacteria. That means that at some point during pregnancy, DNA from the bacteria was present in the blood that was shared with the baby. That doesn't mean it was an actual live infection. It could be mom's dead bacteria that was killed by antibiotics, or it may not have even been enough bacteria to make an impact. The test simply shows that something was there. This brings up the question of whether it's worth it to get anything tested at all, since it's impossible to tell what a positive result means.

If I had the opportunity to do it all again, I would still have the boys' cord blood tested, and I'd add in the placenta test (not really interested in urine or foreskin testing). Much of it has to do with the fact that I sleep better at night knowing what we are facing, but now I also know how assertive I have to be with laying the groundwork for treatment based on the initial results. Wyatt's test came back negative, and though I will have him tested once he is a little older, I don't have the sense of urgency that I do with Emmett, who had a positive test. We have actual documentation on file with all doctors, Lyme literate or not, so in case his health declines, or we face other Lyme related problems later, we can trace it back to the beginning. Doctors cover their asses; we're covering ours--I refuse to deal with anyone telling me I'm crazy or paranoid if my kid has strange symptoms five years down the road. I journeyed through that section of hell while trying to get my own diagnosis, and I won't put that on my son.

-If the cord blood or other tests are positive, a Western Blot should be done on the baby to confirm. It's hard to get blood from a newborn (their veins are pretty much nonexistent), and it's even harder to watch your baby in pain. I just kept reminding myself that Emmett wouldn't remember anything from that day, and it was going to help him in the long run

-90% of Lyme babies that come into this doctor's office are what he calls "floppy babies." That have very poor muscle tone and they have no head control. That's the number one sign of Lyme Disease in a baby

-Lyme babies will also have painful joints. How do you tell if a baby has painful joints? When you touch/press the knee, ankle, wrist, etc, the baby will cry out and retract in pain. At the very least he or she will flinch and whimper

Here are a few other symptoms to look out for:

+ Sleep disturbances
+ GI problems / severe colic
+ Poor feeding / failure to thrive
+ Projectile vomiting
+ Weight loss
+ High irritability
+ Sensitivity to light and sound
+ Not wanting to be held
+ Frequent infections (Serious infections. Blocked tear ducts and such don't count)

Some of these things come with the territory when you have a baby, for instance, they wake up a lot. Most parents have an irritable baby at some point, who has a meltdown after a long day of being overstimulated. I think the doctor is talking about severe instances that never let up.

When I expressed concern that Emmett has terrible reflux, hates everything, never sleeps, and can cry like someone's torturing him for six hours at a time, he said that reflux and digestive problems are signs of Lyme, but a doctor can't make a diagnosis based on this alone, as many otherwise healthy babies suffer from painful reflux. Same thing goes for irritability. The idea is to rule out some symptoms--if the irritability and crying subside after reflux treatment starts, you know what the problem was. If the baby is still experiencing may of these symptoms after reflux treatment, he or she should be evaluated again. In Emmett's case, the other symptoms improved by 75% within two weeks of reflux treatment. More serious symptoms like poor strength, growth, and muscle tone/head control should send up a red flag right away.

I'm not going to lie--I'm still scared, and I wonder if I passed this on to my little one. I do feel much better knowing that treatment for him would not be long or intense, and that he can go on to live the normal life of a healthy kid. Blood test results won't be in for another week, and I'll let you all know as soon as I hear something.

As we went to leave, Emmett's doctor smiled at me and said, "Don't you give up either, dear. You're much more fixable than you think!" It's too bad this guy only works with children--I'd be happy to let him take a crack at treating me. I still have hope that in a few years all of this will be a distant memory, and I can tell my kids, "We had a rough stretch when you were babies, but we're all fine and well now."

Cord Blood Positive for Lyme

When I began this blog at the beginning of 2010, I promised myself that I would write from a positive perspective. I have every intention of keeping that promise, even though I am about to share some sad news:

Yesterday the cord blood sample we sent out to have tested for Emmett came back positive for Lyme.

I don't have many details yet. I called my OB's office yesterday morning to check on the test results, as I hadn't heard anything. One of the nurses returned my call and said, "Yes, we got the results. Something came back positive for Burg-derrr...I'm not sure how to say that..."

"Borrelia Burgdorferi?"

"Yes, that's it!"

My heart sank. In fact, I think it fell right out of me. And before sheer panic set in, I politely thanked her for the information, asked her to fax it to our pediatrician and my Lyme specialist, hung up the phone, looked at my sleeping baby, all curled up and cozy, and couldn't even cry. I was stunned.

Again, I don't have much information yet. For all I know we could be jumping the gun here--maybe she read the results wrong--she clearly wasn't sure about what she was looking at. Maybe the baby is showing my Lyme antibodies, which would actually be a good thing. Maybe I'm in complete denial, which is very possible. Time will tell.

So, it looks as though this blog has taken an interesting turn to say the least. For those of you that have ever wondered what would happen if your baby did test positive for Lyme, stay tuned. I will continue to record our journey so you can read about our successes and failures with the hope that you will be able to get the help you need and avoid the setbacks we come across.

My LLMD is in the process of reviewing the lab results and will call us after he consults with the most respected and well known pediatric Lyme specialist in our area. That makes me feel a lot better. If we did catch a real case of Lyme, at least we caught it early.

I keep reminding myself that even if this is true, the baby is not in the severe amounts of pain that I've endured. I always forget that I've had twelve years of infection causing damage to my system. We are blessed in the sense that we caught this right away and can take care of it before it becomes a larger problem later in life.

We have an appointment with our pediatrician tomorrow. This could prove to be beneficial or a huge mistake--I'm thinking mistake, but I want to keep everyone involved with our children's health in the loop. Our ped doesn't believe in congenital Lyme transmission (she's not hostile about her opinion and she's great to our children), and I'm wondering what she will do when she sees a positive test result.

As much as I love Lyme doctors, I am a little nervous about having them jump right in and treat our baby, as they tend to be heavy-handed with the antibiotics when treating adults, and I don't want to harm or overmedicate our infant. We figured that the pediatrician will take a conservative approach, the Lyme doctor will take a more aggressive approach, and my husband and I can sort through it all and hopefully find a happy place in between. We are in extremely unfamiliar territory, so we want every bit of information possible, from both sides of the fence.

Our LLMD's office called last night and told us not to panic and that everything will be fine. Emmett has no signs of harm or abnormalities and that we wouldn't even be able to start treatment until he is three months old since his system is so new and fragile.

Emmett does seem strong and very alert, though he has not been as healthy as our first. His umbilical cord stump got infected underneath, and the first week he was home, he had to go to the E.R. for a staph infection. Last week his eyes got infected due to blocked tear ducts. Could be completely coincidental--I just get nervous when frequent infections are present.

For those of you now questioning what I've been writing about all along, I can't say I blame you. I'm not sure how this happened or if these results are even anything serious yet. All I know is that we went by the book, so to speak. We did everything we were told, and I have shared everything that some of the best LLMDs in the northeast have told us:

That transmission usually only happens in untreated mothers.
That being on antibiotics throughout pregnancy will protect the baby.
That even though I may have been feeling like crap throughout the pregnancy, my baby was not being affected

I'm really hoping that this is just a misread of the test results or that there is some explanation for a positive result, because it is so rare. I truly believe that.

There are so many happy, healthy babies out there born to Lyme Mamas. I've talked with these women. I know they exist. Our first born is completely fine for what it's worth.

I would give just about anything to be able to tell the world that my newest son is one of these healthy babies. We will do whatever it takes to get him there.

That said, any moms out there have any experience with a positive IGeneX cord blood test? I recall a comment or two a while back regarding the topic and there was question as to whether it was an active infection vs. presence of mom's antibodies. To the moms that posted, if you're still reading this, will you please let us know how everything turned out for you?

Any info is greatly appreciated.