Topamax: The new anti-convulsive medicine for Mujhee.

This is going to be a review of Mujhee seizures. This is a post about her previous review, More seizures: New medication new hope.

Jazak Allah

Last week Mujhee's seizures got worse because she needs twice the Midazolam in a day to control her prolonged seizure. In the afternoon before Eid day, she has her seizures. Her father gave her Midazolam. Early in the morrning, when I got her ready for Eid prayer, she had more seizures. So I gave her another dose of Midalzolam. Alhamdulillah, she was alright with no prolonged seizures on Eid day but was sleeping all day. That night she could not sleep and her seizures came again. She was laughing continuously until tears came out of her eyes. That night I didn't give her Midazolam, tbecause her seizures were short and not more than 5 minutes although it kept coming. She didn't sleep that night. She fell asleep in the morning. In the afternoon she had another prolonged seizures activity so I gave her Midazolam. At night she had it again. The next day she sleep most of the day and awake at night. She missed school a lot because of this.

I noticed that her seizures got worse every second day now. The day that she was seizure free is the day when she sleeps all day and awake at night. Than early in morning her seizures will come again with another activitiy at night. These are the prolonged seizures that need midalzolam to stop. She could get more that 10 short seizures in a day that last for few seconds.

Basically this year Mujhee has developed more seizures and we have been increasing some dosages of her anti-convulsives medication and trying some new ones. Masha Allah, these medications can't control her seizures. On Friday she had her fifth medications review for this year and scheduled for another one before the end of this year. In this review, her neorologist introduces a new medication called Topamax. I already don't like the sound of Topamax's side effects.

She is on two tablet twice a day of Topamax. She is still with the same dosage of Frisium, one tablet twice a day. The Keppra is increased into 4 mls, twice a day. The Trileptal will be discontinued this Friday.

Insha Allah we're going to try Ketogenic Diet as a treatment for epilepsy.

Studies show that approx 1/3 of children treated with the ketogenic diet have greater than 90% seizure control with half of these becoming seizure free. An additional 1/3 gain a 50% reduction in seizures. The remaining 1/3 discontinue the diet due to its ineffectiveness or its difficulty. Epilepsy Queensland Inc.

When I writing this, there is a bit improvement as her seizures don't last longer. Alhamdulillah for the change and I hope her condition will only gets better.

Eid al Adha: What are you willing to give up for Allah?

Last Tuesday, the 10th day of Zulhijjah, the last month of Islamic calender, Muslims celebrated Eid al Adha or Festival of Sacrifice, by slaughtering a sheep or other livestock and distributing the meat to the people in need. Traditionally the slaughter is done soon after the Eid prayer and at the masjid. Here in Australia it is done at the licensed slaughter house. Alhamdulillah, religious ritual slaughter is legal here.

iloveislam.com

Insha Allah, there are many ways you could make the sacrifice especially through the charity organizations like Islamic Relief Australia, Muslim Aid Australia and Human Appeal Australia.

Muslims celebrate Eid al Adha to commemorate the faith of Prophet Ibrahim alaihi salam willingness to follow Allah's command to sacrifice his dearest possession, his own son Ismail alaihi salam and Ismail alaihi salam readily agreed to his father need to obey the command of Allah. In the end Allah provided him a sheep for sacrifice or qurban instead, as both of them submitted to the Will of Allah. You could read the story of Ibrahim's sacrifice here and watch it below.



Can you imagine yourself in the position of Prophet Ibrahim, sacrificing someone or something that you love dearly for the higher purpose? Who is your Ismail? What are you willing to give up for Allah?

There are many thing that I would do for the sake of Allah and for me parenting is full of necessary scarifies. I sacrifice my myself to be a staying at home mother to fulfill the amanah or trust from Allah to me. Instead of working and earning money there is no mistake when I choose to take the responsibility of fulfilling the trust by staying at home with my children 21 years ago.  because I want to raise righteous children. In sha Allah with the help of Allah, I would nurture, educate, manage and protect the growth of my children, as they are my first priority over anyone else.

I also scarify my hard work that was needed to raise a daughter with special needs. Alhamdulillah, being a mother prepared me for this challenge. I could not do it except Allah gave me the help, strength, patience and unconditional love.

I scarify my time with parental duties to fulfil my responsibility. I'm not saying I hate spending time with my children but as a mother I hardly get to spend quality time just for myself anymore, In sha Allah, if it's not in here there will be a time for it later, in the hereafter when we will gather together again.

Alhamdulillah, I wouldn't trade parenting for anything. It's all worth it because it will be a day when my Creator will ask me to account my responsibility as a mother and I hope that day I could tell Him that I raised my children with ihsan to the best of my ability to obey Him and to follow His messenger way. In sha Allah I'll have an easy account because I fulfill it.

Eid Mubarak to you and your family. I hope you have a wonderful and blessed Eid al Adha! May Allah accept it from us and you.

Allahu Akbar!

Acrylic painting that says the majestic name of Allah.

I dream of crying in remembrance of Allah. This is one of my du'a list I wrote on last Ramadan. It was inspired by the visionaire email I received from Sheikh Muhammad Alshareef. I really hope to attend one of his Dream Du'a one day. He gave me an idea to vision my du'a.

When I have spare time, I love doing DIY project. Today I would like to share with you some pictures of what I did for my home to remind me about my dream.

I love Islamic calligraphy. I'm dying to do it but I don't know how. If you looked at my handwriting in Arabic, it's so bad.  I really love this painting by Stephani Fisher. I love its colour scheme. When I looked at the price, I thought I should make one myself. So here what I came up with, an acrylic painting that says the majestic name of Allah in the shape of water drop. This was not my original idea but my idea was I wanted something that can remind me about the dream. I got it from here. 

I know this one is far better than the one that I made, but I really love how the gold brighten it. In my previous post here I have a picture of this painting hanging above my writing table.

I also painted it on the rock.

Be creative. Do something creative. If I can do, you can do it too.

AFOs: Mujhee's fifth fancy footware.

It has been more then two years without AFOs. Last year I decided not to get Mujhee AFOs because she was never comfortable with them. We got her a piedro boot instead. Read the previous post about AFOs here and here.

This year we decided to get her the AFOs because her paediatrician and physiotherapist recommended her for preventing deformity, as her ankle twist outwards and it helps stabilized the joints.

These are her fifth AFOs and instead of having one piece, they are two pieces.

It was early term 3 when we went for casting. Mujhee's physiotherapist and speech therapist was with us for the appointment. She was not really well with viral infection. When the orthotist examined her legs, he recommended the two pieces AFOs for Mujhee to help control her spasm and keep her ankles in place. Before casting, he was afraid that he could not get the right casting as she was not relaxed. But Alhamdulillah, she was great at casting. Actually the ward feeling of the plaster made her fall asleep during it so he got the beautiful mold for the cast.

She still had a virus the day for fitting. We still went because the previous week I cancelled the appointment and I didn't want to cancel once again even though she had seizures just before we left home. I gave her medication and hoped that it would make her fall asleep, but her seizures got worse. Anyway the orthotist could not finished the adjustment that day so we went home without them.

When Mujhee had an appointment at PMH for orthopeadic clinic her physiotherapist called to bring in her new AFOs. I already really liked her new AFOs even before she wore them. It looked so easy when she put them on Mujhee and she looked comfortable. Alhamdulillah.

By the way at the orthopeadic clinic we found that Mujhee's hips are stable and she will continue to monitor her hips through the hips surveillance clinic and have a review in a year

I only pray that the Mujhee's fancy footwear, AFOs, would be perfect for her, so she won't feel uncomfortable when wearing them and help in correcting deformity and stability of the joints.

Information about Paediatric Ankle Foot Orthoses here, the two pieces AFOs here and more for parent here.

More seizures: New medication, new hope.

This is just a quick update about Mujhee's seizures. There are few reasons that make her seizures increase like viral infections, puberty and teething. Yes she is still teething at 9 years old. The tooth has been there for more than 6 months but the gum has not yet been pierced. Note to myself to call for a dentist appointment.

Her medication has been reviewed last Friday. She is on a new medication called oxcarbazepine. Her clobazam has been increased to 1 tablet twice a day. She is still on levitiracetam but the doctor will reduce it later as it hasn't helped in controlling the seizures.

Before the review she got more of the normal absence seizures like day dreaming by being very still followed by chewing movements, rapid breathing and rhythmic blinking. Her clonic or grand mal seizures has increased this time with the jerking of her arms, red colour in her face, excessive dribbling from the mouth and losing of her bladder control. Recently she has new types of seizures called gelastic seizures with the sudden burst of laughter and crying. Here's more information about gelastic seizures. Since the review, her seizures are getting much better but still are not in control.

This term of school (term 3 of 2013) she missed school a lot. When she is unwell, plus the increase of seizure, also means that she'll have sleeping problem too. Some days she would stay awake all night and sleep through out the day. Some days she can be awake for more that 24 hours but she won't go sleep for more that 12 hours.

I think it's just the same old thing happening with Mujhee. More seizures and new medication, medication which can't control seizure, a review, increase in medication, seizures will be controlled for a while and then the process is repeated again.

But hey, don't get me wrong. Life gets better. Alhamdulillah, I've not only been busy with my 6 adorable children. I'm doing great too, I love being the student of the Qur'an, I'm enjoying teaching Qur'an class on the weekend, I loves making skin care products for family and friends, I do craft and DIY home decorations, I like photograph nature and the list can go on and on.

I write my blog here.

When live get hard, don't lose hope. Never lose hope in Allah!

Talk to Allah: Get closer to Him during Ramadan 1434 Hijrah with the Qur'an

Free Islamic Calligraphy

“La ilaha illa Anta [none has the right to be worshipped but You (O Allah)], Glorified (and Exalted) are You [above all that (evil) they associate with You]. Truly, I have been of the wrong-doers."  Al-Qur'an, Al Anbiya  21:87

I am so grateful that I celebrated Ramadan this year. It is so sad that Ramadan has come to end so soon. I don't know if I'll still live to experience another Ramadan next year. I miss Ramadan already.

Once my Qur'an teacher reminded us that we are not lack of knowledge but lack of doing good deeds. I though, this is the time that I put an afford to practice what I know. In Islam doing good deeds and the right belief go hand in hand. There are so many verses in the Qur'an mentions about them and this one is my favourite ayah,

"O you who believe! Do your duty to Allah and fear Him. And seek the means of approach to Him, and strive hard in His Cause (as much as you can), so that you may be successful." Al Qur'an 5:35

Ramadan is about drawing closer to Allah by the recitation of the Qur'an, which was revealed in the same month. It is the tradition of the Prophet Muhammad sallallahu alaihi wasalam to finish the whole Qur'an in Ramadan with angel Jibreel alaihi salam. I am so glad that my Qur'an teacher gave us memorization homework of some juz or sections of the Qur'an for revision during Ramadan. Alhamdulillah, Allah blessed me with the time to study them.

I also take time to study the Quran explanation. I love it when I understand the Qur'an. Once I was in the car reciting Qur'an and tears came. There are so much things that Allah is telling me through the Qur'an. Allah is talking to me through Qur'an. This made me realized that I really need to study the Arabic language, the language of the Qur'an,  to understand the Qur'an and to understand what actually Allah is trying to tell me. Insha Allah I would like to join Arabic with Husna teaches by Ustaz Nouman Ali Khan.

I love being the student of the Quran. I just love it! May Alllah help me with my study and keep my intention of studying the Qur'an for remembrance of Him. Allah said in the Qur'an,

"Verily, in the remembrance of Allah do hearts find rest. " AlQur'an (13:28)

 "Therefore remember Me (by praying, glorifying). I will remember you.'' Al Qur'an (2:152)

I remember the hadith my teacher told me at the beginning when I started study Quran that it was said by the prophet that those who read the Quran beautifully will be in the company the angels but those who struggle when reading, will have twice reward. Subhanallah!

"Verily the one who recites the Qur’an beautifully, smoothly, and precisely, he will be in the company of the noble and obedient angels. And as for the one who recites with difficulty, stammering or stumbling through its verses, then he will have TWICE that reward.” [Al-Bukhari and Muslim]

This Ramadan I bought a note book to write my conversation with Allah. Alhamdulillah, during Ramadan I took some time (I wish I took more time) before iftar or breaking the fast to talk to Him by praying or making dua to Him. I go to a quiet place in my house, usually in my bedroom, and I just talk to Him.

I always admire how Prophet Yaakub alaihi salam who used to complain to Allah,

 “I only complain of my grief and sorrow to Allah…” Al Qur'an (Yusuf 12:86) 

This is the best example. I always remind myself that if he complain to Allah why dont't I?

I remember my teacher reminded us about prayer before iftar and she said to be very specific when you pray and say all the details what you need to ask. Like what she said, I have got to be very specific and detailing in my dua. I give thank to Him for everything that He bless me with and the things that He keeps away from me, I ask for His forgiveness by deleting all my sins until there is no trace of them,  I ask Him to guide me to the truth by showing me the straight path, I ask Him to keep my faith strong and I ask him for many more things not only for myself but other as well.

Talking to Allah make me feel closer to Him. Subhanallah! During Ramadan I listen to Ustaz Nouman Ali Khan beautiful explanation about Allah is Near in Qur'an Weekly here.

Through the Qur'an Allah is talking to me. I'm grateful that I can talk to Him. I do feel blessed and closer to Him. I would say that the best training from this Ramadan for me is that I was able to develop the habit of talking to Him.

Our family favourite Eid cookies.

It has been a week since Eid, a celebration after the month of Ramadan, the fasting month. I know it's too late to say Eid Mubarak but I hope you had a blessed Eid and may Allah accept our deeds during Ramadan.

Speaking about Eid I would like to share the Eid cookies or biscuits that my girls and me makes almost every year. They are the Chocolate Almond, Makmur, Pineapple Tart/Nastar, Rainbow Crystal and Sarang Semut/ Ant's Nest.

Insha Allah I would like to share the recipes here for my future reference. Most of them are in Malay though.

I made Nastar as my soul mate called it or Pineapple Tart especially for him and my beautiful girl Riyah. I got the recipe from Mat Gebu at the Dapur Tanpa Sempadan. Here is the link for the pastry and the link for the pineapple jam is here. Usually I make them with butter but this year I made them using margarine. I found them a bit harder. My soul mate likes them to be rolled but since I don't have the mould like this or this so I made the Nyonya style using the cookie cutter like this.

Pineapple Tart

My other two beautiful girls Tas and Niifah really love the Chocolate Almond. I got the recipe from Sweet V@nilla blog, a final year medical student in Moscow who want to be a chef . Here is the link to the recipe.

 Chocalate Almond

We made the Sarang Semut Biscuit or The Ant's Nest because Niifah loves it. This year when we made it the girls just realized that the chocolate rice was actually the ants on the ant's nest. Here is the link for the recipe.

 Ant's Nest

The Makmur Biscuit and Rainbow Crystal Biscuit are my all time favourite. I always make Rainbow Crystal for Eid because it is my old time favourite other than Makmur. For the Crystal Ball recipe I got it from Resipi Chef and the link is here. For the first time this year I got my gut to make the Makmur but during the time when I was making it, I said to myself that this is the first and last because it took so much of my time to make it. It tastes really yummy and I may make it next Eid, so I better save the link to the recipe from My Lemony Kitchen here, Lisa, a blogger who live in Perth. I use half of the ghee recommended on the recipe.

 Rainbow Crystal

 Makmur

We all have our favourite cookies for Eid. I wonder if Mujhee could take her food orally instead through the PEG or tube on her tummy, what would be her favourite? When I asked Fana, my youngest girl, which one is her favourite, she say all of them.