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)”

my-son, research, treatment

Chelation?

So, as I mentioned, my 6 year old has been diagnosed with heavy metals. In particular, he had a very high amount of lead in his urine on a “provoked urine test”. As a result, I find myself in a similar realm of uncertainty as I did when the Lyme diagnosis arrived — except that I know less about lead and chelation than I do about lyme (now). As with Lyme, there is uncertainty in the testing and the treatment. Here is what I’ve been able to find out so far: Continue reading “Chelation?”

kids, my-son, thoughts

Loss and Control

In the past couple of months, I’ve had to make an unexpected transition, from patient to caregiver. As a caregiver, I am faced with all the uncertainties I faced as a patient, and the additional responsibility of asking an innocent to step into the unknown with me. He has placed his trust in me completely, and I must provide a wall of certainty against which he can rage and storm over the trivial (powdery textured pro-biotic/yogurt mixtures) and the tremendous (the fear and pain of a blood draw that often ends in nausea and vomiting). Continue reading “Loss and Control”

my-son, thoughts

Storms and fevers

My son had one of his most difficult days in weeks today. He had a doctors visit, which he physically fought to avoid, followed by the realization that he will need bloodwork tomorrow and monthly afterwards. At the doctor’s office he heard that he has something else wrong with him — Lead — that will require yet more medicines and supplements. I hope to say more about that later, but you can imagine how we felt when we found out he has the issue of multiple heavy metals to deal with on top of the Lyme.

By the time he got to dinner, the thought of doing one more thing he didn’t like (such as taking his medication) was completely overwhelming to him. On top of that he was overtired after waking early a few days in a row, and simply could not pull himself together. We had over an hour of difficulty, including a complete break to go upstairs and put on P.J.s with mommy doing everything to provide that extra love, before he was able to gather himself and down the drugs.

None of this is surprising, it is part of what we go through right now on a regular basis (though this is worse than usual). Instead, what awes and touches me is what happened after it, at bedtime. Continue reading “Storms and fevers”

kids, my-son, treatment

Helping a 6 year old to buy into his own treatment

One of the more challenging parenting experiences I’ve had in years has been the process of helping my son to accept and support our efforts to treat his Lyme disease. He dislikes medicine (in general) and especially dislikes medicine that has a bad aftertaste (as his Ceftin does). As a result, we have in the past given him a lot of leeway about taking optional medications such as cough medicine, and he has rarely taken anything for more than a few days. But for his treatment to be successful, he currently has to take two doses of antibiotics each morning and one each evening, along with probiotics at lunch time (I can’t give him an evening dose without waking him up, so I’m hoping the lunchtime dose will suffice). Additionally, he has to do this for weeks to months, so he has to do it willingly as I can’t possibly force him or bribe him to do it twice a day for an unknown length of time.

The good news is we got there, he is doing a great job of it. I still have some big hurdles to get past with him (we haven’t even discussed the need for monthly blood work for example, something that causes him to vomit each time we do it and is hugely emotionally trying). But the medicine he takes, in a routine fashion, without fail. Continue reading “Helping a 6 year old to buy into his own treatment”

my-son, thoughts

Finding a doctor

Once we figured out that my son had probably been exposed to lyme disease, my first step was finding a doctor who could confirm my layperson’s diagnosis and help us determine how to treat him. I felt a sense of urgency because I was worried about the 18 month lag in treatment (minimum) and the presence of neurological events that might have been caused by Lyme disease.

However, I had a very difficult time finding physicians who would treat Lyme disease in children. The doctor who had helped me through my own Lyme disease does not treat children. The most famous pediatric Lyme specialist, 80 years old and embroiled in difficult court cases because of his passion for helping sick children and his non-traditional approach (from an IDSA perspective) seemed overly busy. Another top physician, trained by him, was currently just beginning to call back folks who’d asked for appointments last June. And so it went. Continue reading “Finding a doctor”