I am on tick watch. I have to keep my eyes open every day, do tick checks on my kids, encourage them to enjoy the outdoors with my heart in my mouth, teach them to be safe without teaching them to be fearful, never completely let my guard down. I am on a trip, to a place where ticks are everpresent, in a season when they are abundant. Read the rest of this entry »
Doing the joy dance (or: popping pills)
February 25, 2010 at 11:40 pm (my-son, treatment)
Tags: howto, kids, treatment
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)! Read the rest of this entry »
Chelation?
January 26, 2010 at 9:55 pm (my-son, research, treatment)
Tags: chelation, lead, research
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: Read the rest of this entry »
Loss and Control
January 20, 2010 at 8:33 pm (my-son, thoughts)
Tags: family, thoughts
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). Read the rest of this entry »
Storms and fevers
January 18, 2010 at 7:33 pm (my-son, thoughts)
Tags: chelation, climate-change, lead, thoughts
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. Read the rest of this entry »
Helping a 6 year old to buy into his own treatment
January 11, 2010 at 10:14 am (my-son, treatment)
Tags: antibiotics, parenting
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. Read the rest of this entry »
Finding a doctor
January 7, 2010 at 9:26 am (my-son, thoughts)
Tags: doctors, thoughts
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. Read the rest of this entry »
Diagnosing Lyme in my son
January 1, 2010 at 7:57 am (diagnosis, my-son)
Tags: family
I have waited a long time to make this post, for a two reasons. One is that I am still weighing the implications of writing about someone else’s life so publicly. Another is that I felt uncomfortable discussing anything here before I had told him what we discovered. I have resolved the latter and, at least for now, come to terms with the former. Let me explain:
About 18 months ago (March 2008), my husband and I had my son tested for Lyme disease because he had become chronically ill and very fatigued, unlike his younger self. Although part of his test (the test for current infection) came back positive, we were assured that he did not in fact have Lyme disease. I consulted with an ID doc who specializes in Lyme disease to confirm this and was assured that his symptoms were “within range of normal.” At that time, I had not yet learned enough about Lyme disease to put myself into long term treatment, I still believed / wanted to believe the doctors who told me I was cured, and I believed / wanted to believe the doctors who told me my son was fine. Read the rest of this entry »
Thanks, mom
May 20, 2009 at 9:32 pm (my-son, thoughts)
Tags: family, thoughts
I’ve been trying to think of the right way to say thank you to my mother for over two weeks now (ever since I realized mother’s day was coming up :). But it was only recently that I finally realized what I want to do. This post is for her.
Let me start by describing some of the things she and my dad have done for me this year. Perhaps the most important, to me, is the fact that they seem to have cured my children of a series of immune dysfunction. The children started having colds that they could not lick, ear infections, and even a sinus infection once, the same year that I became symptomatic. For many months of each year they were sick more days than they were healthy. Doctors all told me not to worry, they were in the range of normal. I of course continually fought with the fear that they had Lyme disease like me. My mother felt that our basement smelt moldy, and offered to buy us a device she had found, called a Wave/Humidex. I was skeptical, but she insisted (and paid) so I had it installed. The same month it was installed, my children went back to normal (this was October) and they have been fine ever since. My interpretation is that the mold bloom we had got all of us sick, and in their case, continued exposure to mold kept them symptomatic up until this device was installed. Perhaps it gave me a boost too.
Then my mother-in-law developed extreme pain severe enough to put her in the emergency room. Five days later, the hospital was still flumoxed. My mother suggested a fairly obscure possibility that she was familiar with because it sometimes affects pregnant women. She also knew a diagnostic test for it. No one here had heard of the test, and they mostly ignored the suggestion … but in the end, with no other ideas, they tried the test (walking backwards relieved her pain) and ended up giving the diagnosis my mom had suggested days before. Thanks to her help, my mother-in-law left the hospital with the correct support in terms of physical therapists. Read the rest of this entry »
And then joy
March 31, 2008 at 2:30 pm (my story, my-son)
False positive! I will be double checking this with the local lyme expert on Friday, but it was his *IGm* not IGg that was positive, which would indicate an infection in the last month or so. Since he couldn’t have gotten sick in the last month, it’s probably a false positive. Not only that, every single lab other than the IGm was normal, so he doesn’t seem to be sick at least according to his bloodwork. He doesn’t even have any allergies.
This still leaves open questions, like whether he’s got something else that’s making him tired and sick a lot. On the other hand, he’s 4 and in school, and likely to pick lots of things up. I wish it were easier to know when to worry and when not to.
**** UPDATE **** we have since confirmed that this was a *POSITIVE* test, despite what is said above. See “Diagnosing Lyme in my son” for more details.
