Ellie has been really tired the last two days. She has been fighting a cold and it has been freezing here in New England. Low pressure days and snow and ice hugging the walls of the house. The wood stove keeps it all at bay but the cold creeps into the corners ready to pounce and the low pressure is keeping our energy low.
Winter Solstice. Shortest day of the year and the sun god seems to be fighting the moon goddess by being glorious and glaring off the snow making the most of his truncated day.
I am tired. Tired after a fight. Things are somewhat resolved with Ellie's school. I will go in after the new year and sit in for the week and make sure it's a good new plan. I will never again trust the trusted so well as to leave Ellie in a new situation without sitting in and checking once, and twice and again and so on. Two new classrooms instead of one. One new teacher and one old to share the split level needs of my aware, eager to learn child who happens to be quadriplegic and whose spine is always in danger of contortion. Positioning is important.
But she's tired my little one. She's growing. She's off her Cisipride. We ran out, the manufacturer took it's time and then when we got it 2 days ago we asked ourselves if we should put her back on. Ellie's GI doc told me of a new study about it that showed Cisipride is linked (in rare cases of course) to increased seizures. Great. What if it was the Cisipride that brought on the seizures in the first place? What if she goes off it and the seizures go away? What if we can get her off the seizure med that saps her energy? What if?
Ellie does have a cold and cough. What to do? Put her back on it and see if the cough goes away? Keep her off it and trust her cold is the cause of her cough, the same cough we all have. She hasn't had a temp so no aspiration -right? Her nurse listened to her lungs today and confirmed her cough is all in her throat. These are the type of considerations I face - every day. Her life is precious to me. My experience dealing with the medical issues she has is always a weighing of short term gains against long term consequences. My experience as a mother is all highs and lows and fear and wonder and sadness about what is not and thankfulness and joy about what is. Ease seems to be the missing part of the potion, testing my ability to be happy and carry on. I wonder if the moon goddess knows anything of that and is trying to provide a time to rest and reflect with her constant night?
3 comments:
If you can possibly get away without the Cisipride I think I would, if I were in your shoes. Reglan isn't much better (and has even been shown to cause depression and neurological damage, which Ellie certainly doesn't need!), but Cisipride is bad for the liver and can cause arrhythmias...ugh. Motility is a tough one to address. My youngest has problems with low motility and residuals, and you know what seems to have helped him the most? Miralax. It seems to help keep things "moving" for him (most of his vomiting would occur when he was "backed up"). Our GI docs have not offered us any drugs specifically for motility because they say the side effects outweigh the benefits, but said that if we did come to the point where something was necessary they might suggest erythromycin. Of course long-term antibiotic use isn't an idea I would be wild about, myself, but have you ever heard of that? It might not hurt to ask if you feel like motility is still a significant issue for Ellie.
Hi MFA Mama, thanks for the support. Ellie is on Myralax and I have often wondered if we would ever get to the point where it would be enough. I am sooo not open to putting her on antibiotic as motility enhancer - the doctor who suggested that should rethink because the long term consequences for the kid doing that are pretty bad. Sheesh. That is such short term thinking - I hate that. However, Ellie is still off the Cisipride - I really thought about your comment and have kept her off it. She has a cold and a cough - but constant runny nose so it's probably postnasal drip. I've had her lungs listened to twice and they are clear so...it looks like we are done with it!
You're so right about the Myralax though and not letting her get backed up. There are other things too like MSM which helps keep things moving and repairs tissues at the same time. Now that she will be off the Cisipride we can relax a little about scary drug complications and maybe see if she can get off the seizure meds.
I am glad you are able to help your youngest with just Myralax. Happy Holidays!
Kathryn, I didn't know that about seizures and Cisapride. Now I'm wondering if it may have been part of Susanna's seizure onset. Anyhow, she's off it now too and is doing ok without it. I am grateful we were able to take it for a time, though... it sure helped get us through the worst.
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