Re-post of parents' appeal for help (from UK WHS Trust forum)

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(3 posts) (2 people)

Re-post of parents' appeal for help (from UK WHS Trust forum)

Posted 5 months ago by Ross

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Ross said 5 months ago

Hi,

I came across the below post on the Wolf Hirschhorn Syndrome Trust for the UK and Ireland forum.

http://www.whs4pminus.org.uk/phpBB3/viewtopic.php?f=10&t=79

I don't personally know the family concerned, but it sounds like they are having a really tough time with their son's almost continual seizures and are reaching out to the WHS community for help.

I think you need to sign up to post, so if you'd rather respond here I am happy to re-post any advice you may have from your own experiences.

Thanks,

Ross
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M said 5 months ago

Hi Ross,

Thanks for enlighting us on her dilemma. Would love to help any way I can, and first by sharing our experience. Although our childrens seizure types were different, i figure sharing never hurts. My daughter went through status, focal, general but never experienced drop seizures or lost consciousness during an episode like their son though.

Anyways, we went through a few meds to finally find the right combo. We tried Dilantin ( not recommended for long term use due to side effects) but aren't they all >.<... Tegretal (for status elipticus), Epilum (spectrum control kind of like Keppra), and Clobazan.

In the end, we learnt that the Tegretal was suppressing the Epilum levels so they weaned us off Tegretal and they added Clobazan and then all was good! We had two amazing neurologists that helped us through this and were extremely grateful

So my point is, make sure they have a good understanding of the medications given to their son and the combinations as some suppress each other. I never challenge a doctors knowledge or competence, but as we all know due to the rarity of WHS, its a learning experience between both sides. We were also actually going to try the ketogenic diet as this was going to be the next step if the last combination didn't work. I've read the John Hopkins Ketogenic book and it gave me a better understanding on the diet and demands of it.

Hope he gets better, it's heartbreaking to hear what they're going through....

Love n Light to all...

M
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Ross said 5 months ago

Thanks for sharing, M. I'm sure there will be many parents, myself included, who can take something from your experiences.

I have re-posted your message on the other forum.

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