In the name of Allah; the entirely merciful; the especially merciful - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

Tuesday, 31 May 2011

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.

Friday, 20 May 2011

Seizures, spasticity and sleeping.

In the beginning of October last year, after the tonsils surgery, Mujhee's spasticity increased. I found that it was hard to change her because she wraps her arms around her body so tightly while her knees are so hard to straighten. Kay, who gets Mujee ready for sleep every night also complains about how hard it is to change her pyjamas.

Between the early months of October until February she would curl her body like a ball when sleeping and in the morning she cried if I tried to straight it. It was not easy to put her in and out the wheelchair as her muscle were hard and stiff as rocks.

I was not the only one who noticed it but her teacher at school also complained about how hard her muscles were. She was not happy when stretching. She suggested that she was in big pain and need to seek medical advised.

I called the CP liaison officer and requested to see a paediatrician but they didn't get back to me soon. I chased them again for the second time until we got an appointment on the 30th November 2010.

While waiting for that appointment I took Mujhee to our GP for advise. He prescribed Diazepam for Mujhee which relax her muscles but make her sleepy during the day time and awake at night. Prior to this Mujee started developing sleepless night. We went back to the GP and he suggested lowering the dosage.

The day Mujhee attended Rehabilitation Mobility clinic (30.11.2011), I told the doctor, who usually give her Botox injections, and the physiotherapist, who happen to be her first one, that her muscles had tighten. It was hard for us to change her and hold her. One thing for sure, she was in a great pain.

The doctor checked her hips and noticed how strong her muscles are. She prescribed her Clobazam, and scheduled for Botox in February. She also made a referral to EEG to check her seizures activity. I didn't remember when Mujhee's EEG was done but until now, the doctor hasn't seen her to discuss about the result. I assumed that her result are still the same from the previous EEG.

I also didn't remember if the medicine has made any difference to her muscles before the Botox. She was still sleeping with her body curled like ball. At that time her sleeping time was 2 am every night. She had the Botox injections on the first day of school this year. That injection was her first Botox after her hips tissue release surgery more than a year ago. She had Botox before the surgery.

Alamdulillah after the injections her sleeping got better. Her muscles are much more relaxed. For the first time the doctor also gave her Botox on her upper arms. It does relax her upper body but not much because sometime her arms are still very hard to stretch especially when I change her top. Things improved so much after Botox. I remember her teacher has suggested for baclofen but I didn't take it seriously because her condition was better at that time.

Now Mujhee is still on Clobazam but her seizure increase from last week. She twitches her arms muscles more. She chews her mouth repeatedly, and then she turns her head to the side before losing focus for a few seconds. She woke up a few times at night crying like she has nightmares. She could not get back to sleep until I calm her down and put a warm wheetbag on her foot and tummy. The nurse at her school told me about how she rolls her eyes up. Her swimming instructors also notice. Now that her medical conditions have changed she needs to see the doctor soon. I just called PMH for an appointment to discuss her conditions. Alhamdulillah we got an appointment for next Tuesday (24/05/11).

I wonder if her sleeping disturbed has anything to do with her increasing seizures. Is she in pain? It seems like I have more questions than the answers.

Monday, 16 May 2011

The start of term 2

It's the beginning of term 2 already. Alhamdulillah Mujhee was happy to go to school today. Yesterday when I told her that she was going to school in the morning, she said that she didn't want to go because she wanted to have a rest. I told her that she already had her 2 weeks for holiday, then she gave me a big cheeky smile.

Mujhee has a new, awesome teacher this term and she still has the same lovely conductor that lead her class with a program called conductive education. Her class has pretty, energetic and multi task education assistants to support special needs students like Mujhee. Alhamdulillah Mujhee is very blessed for having such great people around her at school every day.

The first day of this term Mujhee missed school because she had an appointment at Second Skin for her postural splint. Mujhee has been wearing it since August last year. Alhamdulillah the suit still fits her perfectly so there is no need to make any adjustments. When wearing the suit, Mujhee's hip and body becomes symmetric. With the suit she is easy to hold. When sitting with the suit on she looks taller and she can hold her head straight.

A week ago, during the school holiday, Mujhee had the hearing appointment at Australia Hearing. She didn't respond well to the hearing assessment as usual. Alhamdulillah her ears are healty. I asked the audiologist to make a new mould because the old one don't have the parts that can hold them properly.

That's it for now. I hope with this post I will continue writing regularly in this blog to update Mujhee's activities and progresses, insha Allah.

Sunday, 15 May 2011

The feeling of losing her

I was surely overwhelming when I heard about Mujhee in the phone.

"Mujhe can't breath. We are calling an ambulance," said the nurse at her school.

"Do you want me to come to school now or straight to the hospital?" I asked her. My mind shut down. The sudden fear prevent me from thinking. I didn't even know what to ask or say. I was just worried that something bad is going to happen to her. I tried to stay calm by saying dhikr.

"Go to the hospital," She told me.

Abah, Fanna and me went to the PMH hospital in a hurry. It was Friday. Abah was thinking about his Friday prayer and his work after prayer. When I told him that it was our daughter's life and death at hand, he quickly rushed to the hospital. I can't blame him for being insensitive about this. I think he is immune to it. The hospital and pain have become normal to him.

When we arrived at the hospital, she wasn't there yet. Soon after that I saw an ambulance enter. I moved quickly towards it. When the paramedic open the door I saw one happy girl smiling back at me. Alhamdulillah. I was released. Eventhough she looked perfectly fine, they took her into the emergency ward to do further assessment.

Before I went in, I talked to Mujhee's EA who came with her about what happen at school. When I sit next to her on the hospital bed I can smell poop. I looked into her nappy and  saw one hard and dry poop with the size of a tenis ball. Ouch! I was wondering maybe if she was having a hard bowel movement until she was struggling to breath.

The doctor susspected that she was choking. I doubt it because she couldn't move her hand to her mouth. She also doesn't take food orally. Alhamdulillah after all the examine and x-ray she is ok.

I was so close to the feeling of losing her but I am grateful for what I learnt from it.

Therefore remember Me (by praying, glorifying), I will remember you, and be grateful to Me (for My countless Favours on you) and never be ungrateful to Me.
( سورة البقرة , Al-Baqara, Chapter #2, Verse #152)