Dear All, my 3 year old grandaughter has been diagnosed with epilepsy since she was 6 months old. They previously thought it was febrile convulsions.
She is on clobozam, medazalom, they stop the seizures, but they do not prevent them.
My son and his wife have been trying to wean her off them, because she is not interacting and has been told by doctors she is a year plus behind with her learning. She understands what we say, but verbally says only a few words. , and she is very twitchy in her body. Does anyone have experience and could chat to us about drugs, diet and find a path for us to follow. We feel that the doctors just keep prescribing different drugs and are not getting to the route of the problem. Thankyou for reading.................
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saffron007
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In most cases children with epilepsy are prescribed epilepsy medicine to help prevent seizures from happening. Its not clear from you post why your granddaughter has only been prescribed clobazam for so long. epilepsy.org.uk/info/treatment
Please feel free to contact our helpline team directly with any questions or for a chat. We can talk generally about your granddaughter’s treatments, diagnosis, and learning.
You can either email, helpline@epilepsy.org.uk, use the live chat epilepsy.org.uk/support-for... or phone the Epilepsy Action Helpline freephone 0808 800 5050.
Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.
Communicating with people on here and through other social media, is a really good idea. So, I hope you hear from others in this community soon.
If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:
I haven't any experience as a child/of a child with seizures. You'll know all the in depth day to day realities, keeping your grand daughter safe & well I (Nb. Szr's past 7yr's @ 52yrs)
But your comments in relation to "the doctors just keep prescribing different drugs and are not getting to the route of the problem", caught my attention. Am an intelligent, educated individual from a professional background, have found Dr's I've dealt with in my region, to be administrative functionaries. A wish/need to dump drugs on the patients & that's literally it. Have found the most beneficial action to be ;
1. My collating data in respect to the (my) seizures experienced, as to whether they occur on a regular, periodic basis, irregularly, are constant some days, seizure types (Nb. Am lucky, found mine occurred to an incredible precise, periodic basis)
2. In probability, external factors in probability will have a minimal influence on a 3yr old (Nb. @ a 3yr old, doubt she'll be a dehydrated exercise fanatic/out clubbing/working a 70Hr week, excess dieting and/or nothing but a sugar based diet!) But could it be worth collating any data, on what "she's been doing"
3. Have only found my extraordinary caffeine intake & occasional/ or no alcohol intake had an absolute impact. Obviously a 3yr old won't be trying either, but?
4. Whilst am fully respectable of anyone from a "learnt" trade/profession (Nb. Dr, gas fitter, tractor driver, lawyer etc, etc ?). Have found it critically important to question/challenge/refuse to accept actions via any medical professional who's merely taking a functionary approach (I.e. Dumping drugs on the patient, in a functionary manner; in short, if you've found medications your grand daughter takes appear to be extremely effective and others hopeless, worth collating that data & challenging the Dr, who's had 3-4 minutes in 6 months dealing with the issue
5. Have little cash / am a tight "s....d", have no wish to cause issues, but ? Any time and/or £s devoted to getting a second opinion, challenging nonsensical, functionary approach by the NHS/Dr's has been worthwhile (Nb. It is possible that my NHS Trust / GP's are dire ? (Nb. A & E @ York once, an incredible Dr put more "input" into my seizures condition, than "my" Dr's have in 6.5yr's in the North East. Had a similar Dr do the same up in Edinburgh).
6. Have found it critical to challenge the approach of a functionary Dr
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