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qestion re; epilepsy - Page 25 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
Hi guys, we've been away for a few days respite break. OH was no worse than he'd have been at home and we needed the time-out so we thought what the heck!
We wanted to spend a little time doing some fun things with the grandbaby before the surgery and spica casts all start - it's going to be a long road I'm afraid!

Wee souls has dislocated hip since birth and NHS missed it so at 16months the treatment will now begin!

We're upto high doe and stressed so OH is still struggling but we're hanging on in there!
How is everyone else?
M x
Marie, the baby will get used to a plaster spica before the rest of his family do.My grandson at 18 months old, managed to open his bedroom window( 2 safety catches were on and needed to be released at the same time),and fall out, onto a concrete path 13 foot below.He ended up with no head injury thankfully,but a full arm plaster and plaster up to the hip on one leg.He was crawling around like a little soldier within 24 hours. He hauled himself up on the coffee table when he wanted to be upright.Washing was the only thing that puzzled him!
Glad you have had a good break.xx
Hi Daisy and thanks for the cheering thoughts. I'm glad your grandson manged to get around! Kids are resourceful aren't they! lol
Jessie goes in on the 25th of June for the first lot of surgery and cast fitting, please keep us in your thoughts.
Thankks,
M x
Jessie goes in on the 25th of June for the first lot of surgery and cast fitting, please keep us in your thoughts.
Will do xx
Thanks Crocus! M x
Hi all,
Marie, will be thinking of you, 25th is my DD's birthday, so won't forget xx
How is everyone else doing?
Crocus, how is Hubby coping knowing your DD is low? How are you coping? ((hugs)) & don't forget to look after yourself too xx
Paul, how is Lisa? x

Hubs Epilepsy Nurse appointment went very well, she was lovely Image
45 minutes we were with her!

She went through all the basics, much of which I have learned from you guys (thank-you) , but there were one or two things she pointed out I didn't know....
...one thing she said is very important was to make sure Hubs always had the exact same brand of meds, not a cheap/different version as this could cause more seizures. I didn't know that, I thought they were all exactly the same, she says not.
I know he had different brands of his previous pills, - I had to warn him when they were a different shape as he would panic thinking I had filled his pill box wrong! - maybe this caused problems?

She also said I have to chase up the Sleep Apnoea clinic, we need this a.s.a.p as we know tiredness and stress are triggers, so I will be on the phone today.

She has increased his meds slightly and I am to phone her in 4 weeks to let her know how he is doing, but I can call anytime if I need advice.
We see her again in 8 weeks time.
And Hubs has now finally had a definate dx, Partial Complex Seizures. We hadn't yet seen it in writing so I asked if she could forward a copy of the report to us.
All in all a good meeting Image
x
Hi sturdy, glad the appointment with the epilepsy nurse went well. I have always found the epilepsy nurses to be lovely too. They are usually very knowledgeable and seem more approachable than the doctors, so you can ask them all your questions. Image
We had problems with different brands of anti-convulsants too - the people in the pharmacy now know to get in the proper brands for him, although if your GP specifies the actual brand name on the prescription, then the pharmacist shouldnt use a generic.
DD isnt upsetting him, because although he knows about her, unless he actually witnesses anything it doesnt actually impact upon him - out of sight really is out of mind Image
Interesting that your hubby has been referred to the sleep clinic - so has mine! He had to wear a little gadget on his wrist that was attached to his little finger, I had to fill in a sleep diary and we are now waiting for an appointment. I think we are probably at the same stage
Take care everyone xx
So confused! Went to sort out Hubs increase in meds (he was seeing GP anyway) but haven't ended up with the same brand as it wasn't on GP's computer list, and apparently the chemist only get what the wholesalers send them Image
Left a message with the Epilepsy nurse and haven't started Hubs on the increase yet until I hear back.
Chasing my tail once again!

Crocus, Hubs visited E.N.T in May, the consultant there decided not to do their initial tests, but send hubs straight to the sleep clinic at Manchester as he also thinks the apnoea is having an adverse effect on the seizures.
Got in touch with them yesterday and it will be a while yet before he is seen, but it will be within 13 weeks! Not sure how Hubs will cope in a strange hospital away from home, could be interesting Image
xx
Went to sort out Hubs increase in meds (he was seeing GP anyway) but haven't ended up with the same brand as it wasn't on GP's computer list, and apparently the chemist only get what the wholesalers send them Image
Not true sturdy - they can order specific brands, but its cheaper to get whatever is sent, so thats what they do. If the GP specifies a particular brand then thats what they should supply, but they often dont as usually it doesnt make any difference. Epilepsy is one of the few conditions when it does matter. I had to get a bit bolshy about it and the GP contacted them too, but now they get the right brand in.
Continuing with the old drug regime is the way to go. Hope it gets sorted soon.
Hi guys, it's so important re: the drugs and Epilepsy action and National Sociaty for E have a letter re - continuity of drugs for people with Epilepsy, it's listed in the NICE guidelines so there's no excuses for pharmacists to opt out! You need to google and then print it off - we did too and hey presto meds hassles fixed well, for another bit at least! Image
Crocus is right! If GP writes the brand on the 'script they must give you exactly what he has written - maybe getting it clear with the GP will be the way to go too!
Good luck, keep strong!
(((hugs)))
M x
439 posts