Party Time

This is a weekend of birthday parties. Yesterday, Kyla went to a very special luncheon for her friend Riley's birthday. They played dress-up and had a tea party. Kyla had a great time. Last night, we went to Riley's party and had a blast. Today, Kyla goes to a party for a friend from school.

Kyla has now been back on 5 mL of Mestinon for a little over a week. She is doing well, but her eye trouble continues. She's pretty much back to normal. Her bladder problems are kind of hard to track. For the two weeks we were on the lower dose, her urgency to go to the bathroom was just like it always has been. Her incontinence seemed to be a little better. We noticed yesterday that her incontinence was pretty bad, so that is something we have to consider going forward.

Since we are generally vague on what is a high dose of Mestinon and what dangers come along with a higher dose, I called the drug company that makes Mestinon to see if there are any dangers they know of. I have read the label on the bottle several times and couldn't find a whole lot about overdosage. All I could find is that there is a point where the Mestinon will start to make the patient weaker instead of stronger. When I called to talk to the drug company, I got to talk to one of their pharmacists. She told me exactly what the bottle says, which is that if we give our child too much Mestinon, she will get weaker. She also told me that each person responds differently to Mestinon, therefore the company doesn't have a specific dosage recommendation. She says that we need to follow the directions of our doctor and work with our doctor to find the right dosage for Kyla. She did say that side effects, such as nausea, vomitting, and stomach cramps, will increase with higher doses. Kyla doesn't seem to be affected by those, however. I forgot to ask her about Kyla's bladder problems and if Mestinon is known to cause bladder problems.

As for the Albuterol, I still do not see any improvements from taking it. We will probably try to add another dose in the near future to see if there are any improvements. Dr. Engel told us to try to get her up to 2 mg, 3 times a day and we're currently at 2 mg, 2 times a day. It doesn't seem to make her as shaky anymore, so adding a dose shouldn't be too hard. We'll continue to update her progress on the Albuterol.
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