Family introduction

[Dawn DeBois]

Hi Lori! Thanks for introducing your family! I’m so happy to hear that the combination of Ruzurgi, Mestinon and now the addition of IVIG is really helping your daughter. I found the same thing. I was on 3,4-DAP (now called Ruzugi) and Mestinon when my LEMS kept progressing. The antibodies still needed to be stopped.  Ruzurgi increases the amount of acetylcholine releaesed and mestinon slows down how fast the body processes it; but those two alone do not stop what’s causing LEMS- those pesky P/Q and sometimes N-Type Calcium Channel Antibodies! Many patients find they need to add immunomodulation (IVIG or plasmapheresis) or immunosuppression to slow down the antibody attack. I’m so glad to hear your daughter’s personality is coming back!  The change my friends and family witnessed when I started IVIG was amazing. I call my treatment a 3-pronged approach.

[Veerle Van der Eecken]

Hi Lori,

My daughter Emma was diagnosed with LEMS ten years ago. She was 12 years old at the time. In August 2010 she was cycling easily 20 kms and in October of that same year she couldn’t walk anymore. With 3,4 DAP and Mestinon she got better, but for outdoor transfers, she is in a wheelchair. Unfortunately IVIG didn’t work that well for her…

The last 10 years have been a journey with ups and downs and one of looking for answers everywhere. And it still is because LEMS itself is also an “up and down” story, sometimes with good moments and sometimes with (very) bad moments. Today my daughter is quite stable when it comes to muscle weakness, but she is suffering a lot from chronic pains (severe stomach issues, joint pains and headaches) mostly due to the side effects of her medication (and she is taking a lot).

At this moment I am putting a lot of research into the use of CBD. I am looking for a neurologist who is willing to subscribe it because it is illegal in Belgium (I forgot to mention that we live in Belgium, that small country in the heart of Europe ;). We have to go abroad to actually get the CBD. It is very complex, but I heard great stories about it and (hopefully) I will be able to start CBD in the very near future.

Here’s an interesting informative video about cannabis and how it works for epilepsy, chronic pain, cancer, parkinson etc…:
https://www.youtube.com/watch?v=1C6sRkah0mQ

[kristin]

Hello,
I’m Kristin, and my 11-year-old daughter Nienke was diagnosed with LEMS in February of this year. She’s been experiencing symptoms for two years, although we didn’t recognize them as such at first. We’ve been seeing a pediatric neurologist for a year and a half. It’s been a long search. Her symptoms became increasingly severe, she stopped gaining weight, and everything became increasingly difficult for her.

After another examination at the hospital, including a lumbar puncture and an MRI, she suddenly became so ill that she had to be treated in the intensive care unit for almost two weeks.
But at the end of this treatment (with IVIG, Mestinon, and plasmapheresis), the diagnosis was finally confirmed.
She is currently receiving Mestinon and prednisolone and had her second IVIG last weekend.

Unfortunately, Firdapse is only approved for adults in Germany. We’re still waiting for approval from the health insurance company for it to be prescribed as an off-label use.

Lori’s column gave me a lot of hope. Perhaps there are other parents of children with LEMS here?
I would be delighted to exchange ideas!

[Ashley]

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Hey @Kristin !

I’m so sorry that your daughter is going through this as well!

It is so disheartening that Nienke is unable to use Firdapse at this time!! Hopefully you are able to receive approval soon from your insurance company! Firdapse is a game changer for so many of us!

I am happy to hear that Nienke is no longer hospitalized although I’m sure that was quite the ordeal and so stressful for both of you! @Lori Dunham is so awesome and we love having her for insight about LEMS in children. I think Grace may be the only child I know of with LEMS, but maybe @Lori Dunham knows of other children or parents to connect with.

Either way, we are so happy you found us and that we could offer you some hope! Things will get better! Sometimes IVIG can take a few months to feel the full effects so hopefully things will continue to improve for Nienke!

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[Ginny Boynton]

Hi Kristin,

I believe 3,4 DAP is available in Germany. If not directly from a manufacturer, you can try a pharmacy for compounding. If you would like information to look into that you can send me a private message on Facebook if you have it – Ginny Hersperger Boynton. If not, I can give you my email address.

[Ashley]

@Ginny.Boynton Thanks for sharing! 🙂