After not know anything about this horrible condition, Since finding out on Friday my 6 year old daughter Chloe has it but not in the "normal" place's ive been keeping track of her daily activities and have noticed it happen's more in the afternoon, after her shower/bath in the evening and as soon as she wakes up she's in pain. How do I shower her without the water being to cold for her to get in??? Its very cold at night where we live so I dont want to put her in a cold shower and end up getting sick. She's on Gabapentin at the moment, 1 tablet 3 times a day and theres a chance she will have to go up to 2/3 tablets 3 times a day the dr has said. Any help/advice would be greatly appreciated as im at a total loss :(:( Think its all just hit me and im a mess!!
Would it be possible for your daughter to hold an ice pack covered in a flannel on her effected area while taking a warm shower.? I find showers much better than baths. Also is she better off sleeping with no underwear and a night dress to try and keep her cool at night.?
She not long had a shower and I had it cooler than normal but not to cool, if that makes sense!! She held an ice pack there for a few minutes so its better than nothing, will keep this going and hope it helps her, Thanks so much for advice I really appreciate it:)
Yes it did make complete sense, glad that she gave it a try. Fingers crossed it will continue to help her.
She had pain about an hr after her shower but not as bad as the night before which was a good thing, I have a conference call with her dr's this afternoon, I have my long list of questions ready!!! Thanks for your advice:)
Dr's prescribed melatonin yesterday to help with her sleeping, they are going to organize for her to see a neuro dr, genetic dr and a cardio dr!!!
My pain gets worse in the late afternoon/early evening and also after I take a bath. I know what you mean about taking a cold bath. It is not any fun. I try to take my bath before 5:00 and I use a portable heater to warm up the bathroom while I take my bath so I don't shiver. I don't take showers as often because the standing up with the heat of the shower really makes my EM intense.
Maybe you could try the early afternoon time frame for your little ones bath. I hope you find something that will help her out.
Another member gave me a tip for showering a while ago, it only works if you have a shower thats over a bath tho. I run some cold water in the bath then shower with hot water, the coolness of the bathwater on my feet stops me flaring to badly. If I bath I keep my feet up on the edge of the bath and only put them in once I'm almost finished and ready to wash them.
octoberfarm said:
My pain gets worse in the late afternoon/early evening and also after I take a bath. I know what you mean about taking a cold bath. It is not any fun. I try to take my bath before 5:00 and I use a portable heater to warm up the bathroom while I take my bath so I don't shiver. I don't take showers as often because the standing up with the heat of the shower really makes my EM intense.
Maybe you could try the early afternoon time frame for your little ones bath. I hope you find something that will help her out.
Thankyou heaps, Ill try the earlier bath/shower aswell as having cold water in the bath then shower her, the gabapentin seems to have eased the pain a little, shes only on 3 tablets a day at this stage until I talk to the dr again and then hes going to up the dose.
I was on gabapentin at the very beginning of my initial flare up. It worked a little bit for a while, but then wore off. If this happens for your daughter I highly suggest trying Lyrica. It took 70% of my pain away in 3 days. I’m on it along with cymbalta now and it has reduced my pain greatly to where I’m living a normal life, just eating healthier and having tingles/prickles instead of excruciating burning.