Dissapointing Outcome

General Blog
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Very bad day for Emily my Daughter today. After pushing it through the bureaucratic system She completed a two day course of Lidocaine infusions with absolutely no relief. She was distraught , we all thought this would be the silver bullet.

As we were halfway through the second infusion an email arrived from Germany stating that her blood tests showed negative for the SCN9A gene mutation associated with EM. This is good for her future should she decide to ever have children however doesn't help with the debilitating effects of this hideous disease. It does however indicate that She does not have a Sodium Channel defect which would explain why the Lidocaine infusion did not work.

We have tried everything or almost everything western drug wise, Tegratol, Amitryptiline, Misoprostal, Lyrica, Endone, Tramadol, Aspirin, high Magnesium doses, Lidocaine patches and now Lidocaine infusions, no point moving to the Mexitiline oral analogue, its only effective when Lidocaine works.

Reading Dr Cohens web site it appear that the only real things left to try are SNRI's or Methadone, the medical team have ruled out Methadone because of side effects and the list of SNRI's scare us , very potent drugs.

We have been told to keep taking the Lyrica and Tramadol , not that effective, we have also been told she will have to have counseling and perhaps learn to live with the pain. Not a great thing to hear about your 13 year old who has ambitions and certainly not not acceptable for my Wife and I.

So after reading a UK Naturopathy website containing a testimonial from a patient who had chronic EM we have decided to pursue a Naturopathic approach , cant hurt and it will be a month before our next out patient appointment for Pfizer controlled western Ju-Ju.

For anyone in the UK this may be worth a look if you have not seen it already, This is not a plug, I don't know if the testimonial is even real, however I have no reason to doubt it. If its helps someone/anyone then fantastic.

http://livingnutrition.eu/about/ see Helena's story.

Here in Adelaide we have booked a 90 minute session with a highly recommended Naturopath a week Saturday. Like I said it cant hurt.

If anyone out there after taking the time to read this can recommend anything I may have missed it would be greatly appreciated. I will keep you posted on the Naturopathic approach.

Thanks

David

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I am sorry Emily has had such a rough time, David. I hope she find relief soon!

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Saw the Naturopath yesterday ( two hour consultation) and have now started the following regime , he says it will take two up to two weeks to start having the full effect so here's hoping.

Fish Oil capsules 2 per day morning and evening.

Magnesium 2 per day morning and evening.

Nervagesic (which I was not aware of) two tablets in the morning two in the evening

Organic Turmeric one capsule four times a day

Herb blend liquid containing Horse chestnut ( Aesculus hippocastanum), St Johns Wart which is a specif type, low in Hypericin at only 0.21 mg per millilitre and also Centella (Centella Asiatica). She has 5 mil of this 3 times a day.

She is also still taking Lyrica which has no interaction with any of the above. Hoevwer the Lyrica is oding very little. Meeting with the Medical Team at the end of the moth to see where we go next , the hope is these Natural remedies will start working.

Hopefully it will give her some relief , poor kid . house bound and unable to do to anything She used to do , soul destroying. Ill keep you posted if these natural remedies prove to be effective.

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Just looked at the ALA stuff , thanks Tizzy, which is interesting. again I wasn't aware of this might have a word with the naturopath about this as well although at the moment Emily is taking so many supplements She might start rattling.

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Dear David,

I wanted to write to you to offer support and strength. I am so sorry to hear that Emily has this awful disorder. I was upset to learn that I had it at the age of 59 - it would seem an enormous burden to bear at 13. If I hear of anything in my next travels to doctors which help me, I will be sure to share the news.

One question to ask - and I am sorry if this sounds invasive- I have an eating disorder and was told last week that the EM may be the result of my slighty LOW but chronic low sodium. Is Emily's sodium level normal? I was told that the chronic low sodium could damage or effect the sodium voltage channels,

Just trying to help....

Best,

Jordy

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Hi Jordy,

Thanks for the support, Emily has had quite a few blood tests after a hospital admission, they did quite a few all came back normal.

Regards

David