On Keppra for Epilepsy

Mujhee has an appointment with her Paediatrician at Princess Margaret Hospital last Tuesday to discuss her medical condition as mentioned on my previous post about Seizures, spasticity and sleeping. Allahu Akbar, her seizures are increasing since the beginning of Term 2, three weeks ago.

Mujhee has more muscle twitches and chews her mouth constantly, and then she turns her head to the side before she stares into space for a few seconds. Occasionally she would roll her eyes up or side to side. After that she usually "wakes up" with a big smile but sometime she cries. At night she wakes up 2 to 3 times crying. It appears to me that she is having nightmares.

Mujhee's paediatrician asked me to lay her down on the bed so she can examine her hips. When her paediatrician checked Mujhee's scar on her upper legs from the surgery to extend her soft tissues, she found out that Mujhee has showing the signs of puberty. When I asked her if it is normal for a child like her to have started showing signs of puberty she said yes. I might post about this in another post.

I have mentioned to her that the Clobazam does not relax Mujhee's muscles. Her muscles got better only after Botox. I also told her that Mujhee's orthopaedic said, in the beginning of this year, that he will not be surprised if she needs another soft tissue surgery in the future. Alhamdulillah her hips are stable now.

After the examination, Mujhee's paediatrician comes up with a new medication for her seizure. She prescribed her Epilim and warned us to look for allergic reaction or if I feel like she's not herself after taking the medicine to bring her to the hospital. Mujhee will have Botox injections on her upper legs and arms on 7th July 2011. Meanwhile she will be referred to a Dietician to discuss and review nutrition she needs during puberty. She also needs to put on some more weight in case she needs any surgeries later on.

Before going home Mujhee had her blood taken for tests. She screams so loud when her blood was taken. It must hurt her a lot. Then I went to the pharmacy to get the Epilim.

The night when she started on Epilim, Mujhee fell asleep soon after taking the medicine. She woke up 2 times with shortness of breath. After I pat her, she went back to sleep. In the morning I found rashes on her nose, cheek and her tummy. Her eyes, nose and lips were swollen. She vomited after I fed her breakfast. She had seizure activity more frequently.

I was about to take Mujhee to the hospital, but tried not to panic. I thought I called the number given by the pharmacist first. The pharmacist asked me to call the doctor who prescribed that medication when I asked her whether to stop the medication or not. I called the CP liaison officer so that she can get in contact with Mujhee's paediatrician. I was worried because her seizure keeps coming. When the paediatrician called me back she told me to stop the Epilim and let her body flush the drug off her blood system before beginning a new medication.

We came back to PMH on Friday to see Mujhee's paediatrician for another medication, called Keppra. She told me that Keppra might make her sleepy and give her upset tummy. When I went to the pharmacy to get Keppra, I tried to return the Epilim but for safety policy it is not refundable. So I found myself pouring 3 bottles of Epilim down the drain. What a waste?

Remember she had her blood taken on the previous appointment. Alhamdulillah, the test was all good but then the pathologist missed the test on Vitamin D which was the main reason for the blood test.

When I was at PMH I also asked her to refer Mujhee for vision test just to understand what her current vision is.

For now Mujhee is on Keppra to control her epilepsy. Alhamdulillah she hasn't had any allergic reaction but she gets upset tummy and vomits. Insha Allah, if she still vomits throughout this week I will call her paediatrician for advice. She is still chewing and twitching but not as much as before.

I ask Allah to give her shifa and keep us patience for the test He bestows on us, amin.


Min said…
amin Ya Rabb! get well Muja!

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