My Daughter has been diagnosed with absences

[philprice216]

Hi all I am after any information as my bright beautiful daughter 6 years of age has been having absences for a about 4 months we have had an EEG done most of her absences last for about 15 to 30 seconds, Don't know if this is normal.

We have seen a consultant at the local Hospital, me and my wife felt that he was very flippant with what she had and was confused to what medicine to give her, he prescribed ethosuximide. We were not informed of any side affects and just told to take this if it doesn't work come back and he will try something else. Don't want to sound ungrateful towards the NHS but I'm very sceptical when it comes to one drug fits all.

Does any one have any experience with this drug on their child. we are unsure if we should get a second opinion, we have been told by a friend to try the alder hay in liverpool as they take a better approach towards the medication.

Please any feed back would be much appreciated.

[Hidden]

Hi Phil,

Sorry to hear the news of your daughter being diagnosed with absence seizures. I have had epilepsy now for 42 years and am well controlled. I am currently on Carbamazepine and Phenytoin which I have been on now for approximately 25 years and more. When first diagnosed, the doctors try all sorts of medications to see what impact and effect they have on the patient. If you are not happy with the Doctor your daughter has visited, please don't hesitate to get a 2nd opinion which you have every right to do.

I am based in South Africa, but I suggest you make contact with Epilepsy Action UK to get any further information or advice in this regard. They are very helpful and will hopefully lead you in the right direction.

There are many triggers for epilepsy, but it is important that your daughter is put on the correct medication in the meantime.

Hoping the above information might help.

Regards,

Les

[AmyBadd]

Hi,

Sorry to hear about your daughter. I also have absences as well as a couple of other kinds of seizure. I have not heard of this medication before but epilepsy is a term for a wide range of seizure conditions and dependent on the types of seizures, where they originate and if a particular cause can be pinpointed different drugs are prescribed. Also the treatment of epilepsy is very often a "give it a go and hope" approach. For example, there is no obvious cause of my seizures so I tried two medications that didn't help at all before finally finding one that did. Some young children also grow out of epilepsy eventually.

I don't know if this helps at all, but certainly don't be discouraged if the first drug doesn't work. It's not necessarily the doctor's fault. I would however recommend doing some online research into the drug to find out more about what it is used to treat and any known side effects. The websites of charities such as epilepsy action and epilepsy research UK have sections where you can read up on all approved epilepsy medications.

Hope that the anti epileptic drugs (AEDs) work. All the best,

Amy

[Hidden]

Hello I have epilepsy and have absence seizures, my first was also at 6 years old and was soon under control. I'm 22 now and is still under control I'm on lamotrigine and have been for majority of it, ask about this drug as I can still drink, drive and have children whilst being on it. Hope this helps.

[zippytiptoes]

Hello Phil,

We have a seven year old girl who has had absence seizures from the age of two and a half and we've been through a number of epilepsy medications over the years. Unfortunately we've not found any that control the seizures and many of them for us, have had adverse side effects which have meant that taking her off all medication is currently the preferred option. People respond differently to meds and more commonly, one or two meds or combinations are tried until the right balance and control is met.

We are currently looking for an epileptologist to support us as we haven't had good experiences with the meds we've tried so far.

It seems to be a bit of a taboo subject and no one ever really seems to comment and I find it really hard to think that we're the only people who experience this but we have experienced really terrible behaviour on medication. Specific medications flag up certain behaviours. There is a place for recognising that the seizures could be impacting on behaviour or the frustration from having repeated seizures, but we firmly believe that though our daughter has many, many seizure in a day, her behaviour is much calmer off medication.

She was on Ethosuximide recently and she had terrible paranoia, tummy pains, would hardly eat anything and was very, very tearful a lot of the time. I really must emphasise that this is not the case with everyone and it may be that our daughter just has a specific sensitivity to meds, which we still need to explore and get under control, but, no one ever told us about these side effects and we often have felt stranded and alone thinking we're the only ones.

If you feel you would like a second opinion, you should probably get one. You know your child better than anyone.

I really hope you get where you need to be. Let us know how you get on