Concern: Hi my name is Nabilah my... - Epilepsy South Af...

Epilepsy South Africa

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Nicolien
Nicolien

Hi my name is Nabilah my daughter is 3 going on to 4 yrs in Sept she started having these seizures when she was just 8 months old her fever was over 40 she went for a lumber punch she had an eeg she had a brain scan all normal she has beenbon epilim since she was 1 yrs old but she would always have these seizures especially when she is sick like having a chest infection,ear infection etc and she would always be admitted for one night at baragwanath hospital ive asked for an MRI but they not replying to me so im lost i would like to know if there is anyone that knows where i can get more help they have recently add a tablet to her epilim because she had 3 fits in one days time due to a very bad ear infection pls if anyone can assist me i would appreciate it alot

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EpilepsySA
EpilepsySAAdministrator

Hallo Nicolien

Please let me know where you are based so that we can arrange support and assistance for you and your family. You can email me on nationaldirector.no@epilepsy.org.za and I will link you to the closest Epilepsy SA Branch to you.

Regards

Marina Clarke

Nicolien
Nicolien in reply to EpilepsySA

Hi Marina

Thanks alot will email you now

I had my first seizure in 1993 and went for a head scan, lumbar puncture etc. which did not show any results. I am on Epilim for years now and I used to get my seizures (triggered) after stressful situations. So I have learnt to try and detach myself from stressful situations. Please try and get a second opinion of what is it that triggers your daughter's seizures. I wish you all the best, but just be encouraged that she will grow up and have a full life.

Nicolien
Nicolien in reply to NanaMay

Thanks dear

Hi Nicolien, I am so so sorry about your baby :( My daughter is 13 and started having seizures in august last year....took her to Helen Joseph and i must say, they were and still are pretty amazing. My daughter is on 800mg daily now, they have had to keep increasing it as the seizures did not stop. When shes sick, in pain, extremely happy or really sad about something, she will get a seizure, but now she hasn't had one since been on the 800mg.

My advice to you would maybe be try to get into Helen Joseph and get to the neurologist. The Dr's are really nice and will give you the recommendation letter if you ask and explain the situation. But just like any other Gov hospital, a lot of patience is needed when you go to the hospital.

The Epilim is one of the best medications with the least amount of side effects you can get, maybe they need to increase the dosage, because it seems to be working for my daughter.

Best of luck and keep strong for your princess, she needs that strength now more than ever....i know its so hard to keep the smile when you see her struggle and confused....but your power to keep her feeling ok is priceless, trust me, i see now how me been cool when i wanted to die inside has helped my daughter.

Strongs!!!

Nicolien
Nicolien in reply to RonelleD

Hi Ronell is it possible for you to give me cell number maybe we can chat on whats app

Nicolien
Nicolien in reply to Nicolien

Or here is my number just add me if ypu dont mind 0618814372

Thanks dear will do

Hi Nabila

I just read your post and I'm sorry to hear about your baby. I hope she is well.

My brother used to have such seizures when he was a toddler. From what you say, it seems that baby's seizures are associated with high temperatures/fevers. This is called febrile convulsions. I was told that children outgrow it as they age (which was the case with my brother). He also received the same mode of treatment at a government hospital in Durban; but an MRI scan and anti-epilepsy medication was not considered to be necessary by the doctors. He last had a seizure when he was about 5yrs old.

My mum (she is an OTA) advises that you keep a thermometer at home and must monitor baby's temp when she is unwell (it must not go higher than 39 degrees). When she has a fever, you need to tepid sponge her or place her in a lukewarm bath, and alternate Panado syrup with Ponstan/Ponstel syrup every 4 hours. It's also advisable to keep a few Ponstel suppositories (in the fridge) for very high resistant fevers.

I hope this info helps.

Viantha (Grade 12 - with frontal lobe epilepsy and absence seizures)

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