@veerlevandereecken
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Veerle Van der Eecken replied to the topic Spammer Alert in the forum Using Our Forums 2 years, 3 months ago
Hi Dawn,
Just to let you know that I received a strange email today through Lambert Eaton News Forums.
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Veerle Van der Eecken posted a new activity comment 2 years, 6 months ago
Hi Dawn,
There were 3 reasons why we didn’t continue with IVIG:
1 It didn’t give the expected results (she was better, but not that much).
2 At the time (in 2010), the IVIG treatment was only covered for 60% by the health insurance in Belgium. And the cost for one IVIG treatment was over 6,000 EUR (> 6,600 USD)!
3 After the treatment, she had…[Read more] -
Veerle Van der Eecken replied to the topic Family introduction in the forum Family Forum 2 years, 6 months ago
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…[Read more]
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Hello Veerle,
I’m so sorry to hear about your daughter. “Rare Parents” are the strongest parents I know.
I have a question about IVIG “not working” for her. How long was she on it, and do you know what her dosage was? My neuro was very clear with me that A) It could take several months of treatment to gain benefit and B) I had to do a very…[Read more]
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Veerle Van der Eecken became a registered member 2 years, 6 months ago
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Welcome to the Lambert-Eaton News Forums,Veerle! Happy to have you join us. Take a look around in the different forums, and be sure to read the Using Our Forums post from Kevin Schaefer, our Forums Director here at BioNews. We have another mom of a young female LEMS patient in our group. Lori Dunham’s post in our Family Forum is a great place for…[Read more]
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Hi Dawn,
There were 3 reasons why we didn’t continue with IVIG:
1 It didn’t give the expected results (she was better, but not that much).
2 At the time (in 2010), the IVIG treatment was only covered for 60% by the health insurance in Belgium. And the cost for one IVIG treatment was over 6,000 EUR (> 6,600 USD)!
3 After the treatment, she had…[Read more]-
Veerle, I’m so glad you are finding benefit in this forum. As much as this club isn’t one that anyone ever imagined or asked for, we are happy to have you here with us.
IVIG is exceedingly expensive. This I know. Are there any patient assistance programs in Belgium? There are various ways that one can minimize side effects -such as the horrible…[Read more]
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Here is the link to my column about IVIG. I also wrote a more extensive piece for my blog, The Battle Within, about a year into treatment. You might find these helpful Veerle.
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Veerle, I’m so glad you are finding benefit in this forum. As much as this club isn’t one that anyone ever imagined or asked for, we are happy to have you here with us.
IVIG is exceedingly expensive. This I know. Are there any patient assistance programs in Belgium? There are various ways that one can minimize side effects -such as the horrible…[Read more]
Here is the link to my column about IVIG. I also wrote a more extensive piece for my blog, The Battle Within, about a year into treatment. You might find these helpful Veerle.