Methylprednisolone pulses

Strange couple of days, Xenon DNA test kit arrived today so we can send Emily's DNA to Canada and see what the study finds, we know she doesn't have the SCN9A gene mutation however they may find something else and hopefully this will lead to finding a successful treatment for all.

Medical Team called me today they are admitting Emily for three days worth of high dose methylprednisolone pulses. There appears to be some evidence of its efficacy in pediatric EM. We are due to go in on the 2nd of June , hopefully She will get some relief , who knows even remission. Seeing her back at her old self will undoubtedly be the best day of our lives.

What's the update, Davipot? How is Emily doing?

Hi ,

Methylprednisolone pulse therapy failed to make an impact, Emily now on 100 mg Amitriptyline and Oxcarbazepine titrating dosage up from 50 mg gradually to maximum 300 mg. We have to wait several weeks to see I any of this is helping. Worrying rash and lesions on her leg so hospital are conducting many more blood tests. So far they have picked up very minor things like a slightly overactive thyroid , nothing to worry about and Helicobacter pylori in her gut which can cause stomach ulcers, this probably due to all of the medications She has been on.

The Hospital are looking at another admission for a fortnight at which time they will also introduce Mexiletine into the mix, strange because the Lignocaine infusion failed however they are somewhat frustrated and baffled.

We just keep fighting on , just like everyone else and hope that we hit a solution and soon.

Thanks for asking

Wishing her a speedy solution. Keep us posted.