kids, thoughts

Liberating Constraints

Somebody asked me a few days ago, how I am able to live with and accept the impact of Lyme disease on my life. The resulting conversation helped me achieve a new understanding of what it means to live with a chronic condition.

Because Lyme disease is potentially curable, I find myself living with constant cognitive dissonance. On the one hand, I must believe I can be cured. Otherwise why treat? Also, treatment is less effective if you don’t believe in it. This creates a situation that requires faith.¬†On the other hand, I must accept things the way they are. Otherwise I would constantly be unhappy with my lot. This is not always easy. After getting everything back, losing pieces of myself again is at times agonizing. There’s nothing I can grapple with physically in this fight, and sometimes I get tired of fighting. But in the end, giving up would be far worse than continuing, so I keep going. Continue reading “Liberating Constraints”

kids, my-son, treatment

Doing the joy dance (or: popping pills)

It might seem like a small thing, especially to an adult who does it all the time, but for my son, swallowing pills has not been possible … until yesterday. This might seem like a small thing, but the daily number and volume of bad smelling, bad tasting liquids we’ve had to ask him to consume since December has been extremely challenging for all of us. My son’s stamina and determination have been tested daily. As have my patience and parenting skills.

When my son was able to substitute pills for one of his most distasteful fluids, it was like a weight was lifted over all our shoulders. After he swallowed the last pill for the evening, when we were still cheering, he said to me, “mommy, I feel like I am flying!” I felt like I was flying too. I had promised him a dance of joy and that I would dump the liquid the pills replaced down the drain, and I treated him to song and dance as I poured along with the whole family’s cheers.

Sometimes the small things are so big! And sometimes the big things are so physically small (like a pill)! Continue reading “Doing the joy dance (or: popping pills)”

diagnosis, kids, my-son

A mom’s worst fear

ADDENDUM 11/24/2010: I’ve modified this post to reflect some of my more current understanding about Lyme disease. Mods are marked with the word ADDENDUM below.

I’ve been worried about it since I got my diagnosis… but it was only recently that those worries turned into action. I brought my son in to see his doctor last week because he had another ear infection, and we sat down and talked about how often he’d been sick in the last year and a half … and I was shocked to discover a pattern similar to my own — sicknesses of various sorts monthly almost the entire time. Sometimes even more frequent, and for one two month period less frequent. This is a child who had never had an ear infection until the year he turned 3, and was not frequently sick. I was also concerned because he seemed fatigued more frequently than I’d expect — in fact, his teacher told me that he often appeared glassy eyed by snack time.

I decided that I couldn’t wait any longer and asked his pediatrician to test him for lyme. If I was right, and didn’t find out for another year or longer, I’d be so angry with myself. If I was wrong, I’d feel bad that I made a child who is scared of needles get blood drawn, but it seemed like much less of an issue. Luckily (and of course) my pediatrician was able to take a less biased view of the whole situation. She pointed out that we needed to test for other causes, so we did allergy tests, blood work, and a Western Blot. We skipped the ELIZA and some other tests that he might need, but even so he had 8 vials of blood drawn. Needless to say, this was very traumatic and I’ve been feeling guilty all week. Until today.

Today I called his pediatrician, and the office said the blood work had come in. I requested that they have a doctor look at it, and my heart sunk when an hour later the doctor called to tell me that his IGg was positive (this means that he may have been exposed, but not recently). My first reaction was to imagine him going through everything I’d been through. Logic was completely absent, and so was self control. Since then 3 hours or so have passed, and I will have even more information after I’ve seen the test results (I’ll probably post an update then). In the meantime, I contacted a very special pediatrician who is based in Pittsburgh and is a leading researcher on pediatric lyme disease. He’s been a great help to me in interpreting my illness and he also helped me see my son’s situation more clearly. I also spoke with a doctor in Ohio who specializes in integrative medicine and will talk later today with my homeopath/MD. Here are the results of my conversations so far:

  • The Western Blot, especially in absence of an ELIZA could indicate that he has a disease other than lyme (such as CMV or Epstein-Barr). This is because it tests for antibodies, some of which are not specific only to Lyme. When I see it, I’ll know much more about how likely it is that he really has lyme disease. Everyone I spoke with wants to see our results to interpret them more carefully and we will be faxing them around later today.
  • It is expected that he would have an IGg but not IGm both because he’s had these symptoms for some time, and because (if this is lyme) he’s only been in Frick park once since my diagnosis and was likely exposed to it when I was — ADDENDUM 11/24/2010: I have since learned that this over simplifies the situation and really is only believed by folks on one side of the lyme wars. In my son’s case, this interpretation turned out to be incorrect.
  • Fatigue, as a symptom, is fairly rare in young kids with lyme, and might indicate other illnesses — ADDENDUM 11/24/2010: This is also disputed.
  • Children tend to respond very well to treatment. Oral antibiotics for about a month is not an uncommon treatment — ADDENDUM 11/24/2010: This is a very short amount of treatment, especially for a chronic case of Lyme disease
  • The lyme researching pediatrician will see us this Friday at his clinic at Children’s Hospital. If it is Lyme, he can help us with the treatment. If it is not, he will help us track down what it is. It’s great to have such a top hospital so close by.

I am also diligently looking into alternative options (still searching for them for myself, and of course would want to understand if they could help my son). I spoke with the folks in Ohio at the integrative medicine center in Columbus. They seem actually willing to work in the context of multiple treatments and not as solo silo-type doctors. They specialize in helping folks who seem to have gotten sicker than one would expect from something, by adjusting diet and other things to try to make the immune system work better. By looking at bloodwork, they can tell if they are likely to be able to be of help. They are willing to take a look at both my bloodwork and my son’s if we want. In addition, I have a friend who’s nephew has lyme disease. He is being treated with ongoing antibiotics and has been on them for 3 years because his symptoms recur when he goes off them. I truly hope that my son doesn’t need that sort of treatment, but I asked her for this doctor’s phone number so I can find out more about when that sort of approach is recommended and used. It is very scary to be in the position of deciding which side of the lyme wars I believe in not only to guide my own future but that of a child who is just at the start of his life. I don’t want to screw this up!