We began the month of November with a phone call. The doctor who treats my Lyme had ordered the testing for sweet little man's cord blood, cord tissue and placenta at birth. The results came in and I got a call on the first. Sweet little man tested positive for Lyme.
Now, there is some amount of room for error here. The test that came back positive was the PCR of the cord tissue. The PCR test basically takes DNA fragments found in tissues and replicates them many times to see what the DNA is from. So the test could indicate a lot of things. It could indicate that sweet little man has Lyme. It could be active infection from me. It could be a fragment of DNA from the Lyme bacteria that my body had already eradicated. There just isn't a way to know. What it does tell us for sure is that there was exposure and that is reason enough to treat. The Lyme bacteria is spiral shaped making it particularly well suited to pass through tissues in the body. It can be stored anywhere, not just in blood cells, making it difficult or impossible to track in the body. There is no definitive test for Lyme.
Since the worst possible case is that sweet little man has Lyme, that is what we move forward with. To ignore it might have disastrous results. AND that is pretty much where the "truth" as agreed upon by everyone ends.
My doctor gave me a couple of names of "Lyme Literate" doctors (LLMDs) as she cannot treat Lyme in children. She'd already called around to a few doctors to give me an idea of what treatment might entail and to see if any were accepting new patients. On the list there was a doctor located seven or so hours away, one located about an hour away and one local doctor who would require that we change pediatric practices to be treated. She also offered the idea that we should start with our pediatrician to see if she would be interested in treating him. I sort of knew that she wouldn't.
I know at this point if you don't have a lot of experience with Lyme you may be scratching your head and asking yourself, "Why wouldn't the pediatrician want to treat the Lyme?" Oh goodness, are you about to find out. :o)
Lyme is one of those modern things that seems to have attracted a lot of controversy. This is the way that I understand the controversy (and buckle in, kids, this is gonna be long!): Some doctors believe that Lyme is best treated with 21-28 days of antibiotic therapy believing that any lingering symptoms are not Lyme acting on the body, but simply the body's unique response to this particular bacteria which basically brings on an immune response (which is highly active after the bacteria is gone). Those doctors believe it is normal for this to happen for some time after the course of treatment as the body "settles down" after the infection leaves. Some doctors believe that Lyme is best treated with antibiotic therapy until symptoms resolve believing that symptoms are not the body attacking itself but the bacteria attacking the body. Because the Lyme bacteria is spiral shaped it can "hide" in different parts of the body that may be vulnerable. This is why the testing is so inaccurate. They can give you a test of your blood, but that doesn't mean that the bacteria isn't in tissue somewhere. So it isn't like you can just run the test and decide whether or not you have Lyme. Both sides agree on that. Both sides agree that left untreated (or undertreated) that Lyme can develop into a persistent condition that can cause permanent neurological damage and even death. Both sides also agree that there simply isn't enough research to back up their medical opinion.
Lyme gets everywhere, but doesn't necessarily stay in any one place. It's in many secretions of the body and there is some disagreement about whether or not it can be passed through breastmilk (or through sex for that matter). There is no disagreement about whether or not antibodies to Lyme are found in breastmilk so by breastfeeding I may or may not be giving Lyme to sweet little man, but I'm definitely giving him antibodies to Lyme and allowing him to fight the disease.
The whole debate is further exacerbated by the fact that the original treatment guidelines used by the CDC were developed by a panel from the IDSA (Infectious Disease) which included members who accepted money from insurance companies and had other conflicts of interest. This creates a lot of suspicion around those CDC guidelines since insurance companies (and members of the panel) stand to gain by discouraging the long term use of antibiotics for Lyme. Recently, the IDSA formed a new panel which was vetted to avoid conflicts of interest and that panel agreed with almost all of the original guidelines except one. They changed their position that chronic or persistant Lyme does not exist and now they account for it. ILADS (International Lyme and Associated Diseases Society) also has vetted guidelines supporting the use of long term antibiotic therapies, sometimes using combinations of more than one antibiotic, to treat Lyme. It seems that both sides, though in direct opposition to one another, have enough science on their side (and somehow not enough at all). I think most doctors simply stand to the side and are happy not to treat at all and avoid the controversy.
So.. I'm a consumer and I'm caught in the middle. There's really not a ton of science in either direction and both sides make a bit of sense. If there's not any evidence that long term antibiotic use is helpful and since it may be possibly harmful, then it doesn't make a lot of sense to use extended therapy to treat. BUT it makes an equal amount of sense to treat symptoms of the disease until they are gone. As an adult with Lyme, I feel like it is better to be safe than sorry. I've seen people with persistent Lyme and I know I just can't go down that road. I'm pretty sure if my liver was going to fail it would have done so from drinking diet coke. So for myself I've gone down the road of long term antibiotic treatment. I know how my body is supposed to feel and I feel like if I start to have severe side effects from the use of antibiotics that I can discuss that with my doctor. It all goes out the window with the sweet little man, though. He can't tell me if his symptoms appear or worsen or if the antibiotics become too much for him. I wasn't positive of what my pediatrician would say about sweet little man having Lyme and I wasn't even sure what I wanted to be done for him.
So... an appointment was made. We visited our pediatrician who told us which side of the debate she stood on. She firmly believed that 21-28 days of antibiotics was enough. She didn't tell me that sweet little man could not have Lyme (some doctors believe that congenital Lyme disease is a myth) and she did not minimize the importance of treatment even though he is a newborn (and basically asymptomatic). We told her that our doctor had found an LLMD in the area who was willing to consult with her if she'd like to treat sweet little man. She told us that she knew this doctor and that they simply had different philosophies about the issue. She warned me that this doctor treats outside of the CDC recommendations and to be careful with that. She invited us to seek out a second opinion with an LLMD and told us that she would not be offended. She also consulted an infectious disease specialist whom she works with often and prescribed amoxicillin for sweet little man according to that doctor's recommendations.
We began giving it to him. We received a 28 day supply of the medication.
Because we felt like this wasn't enough for sweet little man, we made an appointment at the doctor an hour from our home, but the one who would treat his Lyme and not require that we change pediatric practices. This doctor does not take our insurance (something I'm finding is quite common in Lyme treatment) but we felt like the cost would be worth it to treat our little guy. The first appointment available was for December 5th. My LLMD tried to call and get the appointment moved up since we were both concerned that sweet little man's immune system is so undeveloped at this point. They were firm in the appointment so we started the prescription from the pediatrician and waited. I also took comfort knowing that breastfeeding was making at least some difference.
The rest of the month kept moving forward like things always do!
With three kids in the household it's difficult to get out without an extra adult so we spend many days inside. This sort of limits our regular photos to random shots that I take during the week.
Mister W loves to play pretend and lately this mostly includes talking on the phone. He puts the phone to his ear and says, "Hello?" He then proceeds to talk and talk and talk to whoever he's talking to which is usually either daddy, his uncle or pawpaw. It is super cute.
I've been sewing some diaper covers. We love our cloth diapers around here (sooooooo cheap!) and I found the cloth I needed to make some really cute covers at a local fabric store. I was getting ready to take photos of the cover when sweet little man started crying. Miss L hopped right up next to him to sing and love on him. She is just the best big sister ever!
AND here's my cover. :o)
Have you been wondering if mister W has stopped putting food all over himself everytime he eats? The answer is no. He hasn't. Note the wrinkly skin on his forehead where some food has dried on his head. Gotta love spaghetti night!
Miss L loves her daddy on spaghetti night too!
This picture is just funny. Miss L is making a face because her orange juice is tart. Brad snapped the photo from a lucky angle and at a lucky time. I just think it's hilarious!
I had been looking at birth announcements before sweet little man was born. I was anxious for his arrival and searching online (because I knew I wouldn't have time to make them) seemed productive! What really ended up happening was that I ended up looking at lots of stock photos and I had in my mind what I wanted on that announcement. One afternoon during quiet time I got out my portrait lens and went to work. I took a lot of photos, but they really turned out!
We recently moved all of our toys downstairs, which has been FANTASTIC. It has also resulted in some interesting interludes in my day if I'm upstairs while they are playing downstairs. One day I was upstairs doing something and up comes miss L and mister W for a "concert." They were playing violins. :o)
After how awesome I felt taking photos of sweet little man for his birth announcement I decided that maybe we should try for a family photo for our Christmas card. We decided we'd try the following Saturday.
It wasn't quite that simple. We had the park picked out, but that day we got a late start and hit traffic. I was so worried that we'd miss daylight!
When we got there we picked a nice spot on a hill that was still in the sun. I set up the camera and tripod and took a couple of test shots of the kids who were very interested in the camera. :o)
I finally got everyone where I wanted them and fired a couple more test shots.
We missed the self timer on our first try.
Not sure what happened here...
Finally, we were all there and seated, but there was a lady walking past.
...and finally, the perfect shot. I'm so happy with this. I'm really thinking I'll print it and put it on the wall. I love it!
I wanted to get some shots of everybody so since I had a family photo I was happy with before the sun set. I don't know what it is about this one, but I like it.
I tried and tried to get one of the big kids. Mister W is just too into that toddler thing to make it easy. I managed to get a few, but none with both of them smiling. :o)
I think this is our best one!
Mister W is hollering at the top of his lungs here.
Brad even got a few of me.
Another great one of the family.
Around mid-month, at just about the same time even, miss L's speech teacher and her OT suggested that she be discharged because she'd met her goals. Sensory processing disorder will never go away for her, but it will get easier as she learns to manage her world. She's made such AMAZING strides in the past year and now it's up to us to keep it going here at home. I have to say I love having the extra time to spend at home!
For Thanksgiving my parents, sister and cousin K came to visit. I do not know how I missed taking photos! Miss L had a BLAST playing with her cousin K. While they were at the hotel swimming Brad and mister W took a few minutes to look at some black friday ads. I just thought it was so cute that I couldn't resist taking a few photos.
He found one with toys and shoved all the rest to the side. We're starting them early I guess!
Saturday we met with some old friends. Miss L and her friend K are just two weeks apart in age. We've added more kids since then but they are old friends. How did I only get a couple of photos that day?!
Since then it's been life as usual (for the most part). Miss L apparently had some bills to pay this day.
...AND sweet little man turned one month.
At one month he weighed 9lbs. 9oz. and was 21 inches long. He's got a whopping case of reflux, but given his family history that's not too bad. He's a strong boy and loves lifting that head up. He's a great eater and loves being worn. He's very portable and though he hates riding in the car he loves being worn in the sling or wrap.
The big kids picked out a giraffe for sweet little man before he was born. Here's his first giraffe photo!
November was a big month for sure. We got a call late in the month that a spot had opened up at the doctor we needed to see for sweet little man's Lyme. We took him in and they remarked that he is the first newborn they've seen (which gives you an idea of just how amazing a thing that really is!). They set us up with a treatment protocol which includes several months of antibiotics. We haven't decided what we're really going to do yet. We don't want to under treat and end up with chronic or persistent Lyme. On the other hand we don't really want to give our newborn more antibiotics than he needs. It's something we're in constant prayer about. We just don't know what's right at this point. We've got a visit with our pediatrician tomorrow to help sort it out, but given that we already know which school of thought she comes from, I'm not sure it's going to help much. We just are trying to navigate what's right (and we may decide to continue antibiotics for another month or two, but discontinue after that).
We also decided to have the big kids tested for Lyme. Those tests came back positive so it looks like we'll be returning the doctor to have them treated as well. We aren't nearly as worried about the antibiotics for them. So I imagine that visit will be easier. We'll keep you posted. Brad gets tested tomorrow.
So glad to be caught up! I'll try to stay on it! Have an awesome week!
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