daughter's check up today

[LKS]

My daughter had her yearly check up today at the hospital. A neurologist comes down from a hospital in London and several other doctors attend. This was a general check up and a review of her anti-epilepsy medication. As she has been seizure free for 2 years now they want to start bringing the medication down. And I'm petrified. When I think back to what she was like before they had the epilepsy under control I just feel sick. She had so many seizures during the night that in the end I slept in the same room. She had many absences at school and her education was severly disrupted. I know they should review drugs but I'm so scared. The neurologist also said that I should really be thinking about special schools for when she transfers to secondary(she is in year 4) but about 3 years behind her peers.There is a part of me that still hasn't come to terms with my daughter's condition even though its 3 years since she was diagnosed.

[nellie]

LKS, <'> <'> <'>

 

I know, it's tough.

 

Nellie <'> <'>

[jayjay]

<'> <'> Be Strong and you and your daughter will be fine sending loads of these <'> <'> <'> <'> <'>

jayne xx

[loulou]

Hi LKS,

 

<'> <'> <'>

 

You must be absolutely terrified about reducing your daughter's medication. I can't begin to imagine how frightening it must have been for you when she was having seizures. My son has chronic asthma and that's scary enough.

 

I'm sure the Doctors will reduce the medication VERY slowly though, and with close monitoring.

 

Thinking of you,

 

Loulou x

[Kathryn]

LKS,

 

Just sending a few <'> <'> your way

 

K x

[Clarkie]

Hi there

 

Do you trust these doctors? If you do, then you must believe they will not reduce her medication for a condition as serious as epilepsy that would endanger your daughter.

 

Sending you lots of <'> <'> <'> <'> <'> <'>

and wishing you peace of mind.

 

Clarkie

Edited March 17, 2006 by Clarkie

[Brook]

<'> <'> just wanted to send these. <'> <'>

 

Brook

[Helen]

Awww LKS <'>, you're in my thoughts <'>

[barefoot wend]

LKS

 

It must be very difficult to contemplate a reduction in meds when things have been going well. Will be keeping everything crossed for you and your daughter.

 

Barefoot

[Malika]

Have many of those <'> <'> <'> <'> Hope it will work out well in any case if she is unwell the medication can be presribe again, but I know it is so worrying, in Epilepsy once you have found the right medication it is a big step.

 

Take care.

 

Malika.

[board]

My daughter had her yearly check up today at the hospital. A neurologist comes down from a hospital in London and several other doctors attend. This was a general check up and a review of her anti-epilepsy medication. As she has been seizure free for 2 years now they want to start bringing the medication down. And I'm petrified. When I think back to what she was like before they had the epilepsy under control I just feel sick. She had so many seizures during the night that in the end I slept in the same room. She had many absences at school and her education was severly disrupted. I know they should review drugs but I'm so scared. The neurologist also said that I should really be thinking about special schools for when she transfers to secondary(she is in year 4) but about 3 years behind her peers.There is a part of me that still hasn't come to terms with my daughter's condition even though its 3 years since she was diagnosed.

just want to say all the best to you and your family thinking of you jill

[LKS]

thanks so much all of you. Couldn't come on before as I had been watching extreme makeover (home edition) and I was a snivelling wreck. I do trust the doctors and they were very good at explaining things and said if I wasn't happy, we would leave things as they are for now, but I know the time has come to move her on. We will have to go through all of these tests again, which my daughter hated. One of them is a sleep deprivation e.e.g. which is the pits. But the plus side of all of this is that we might be able to bring her medication down to the lowest level its been which can only be a good thing, as no parent wants to see their child continually take medication for years and years. I so appreciate all of your support you are all wonderful <'>

[MumTee]

<'> Thinking of you LKS - my cousin has very severe epilepsy and had to be monitored in intensive care when she reduced some meds so I really feel for you <'> all I will say is to trust your own instincts and if you feel you are being pushed in any way, take a bit of time to think it through and dont be afraid to question every decision the professionals make until you are completely happy. Also, make sure all this happens at a time that suits your whole family if possible - you'll need your strength up because you'll have a few sleepless nights worrying even when it all goes perfectly! Though your Docs are fab - to them this is a review that is due, for you its going to be a big deal and not a little bit scary I would guess,

<'> all the best to you <'>