The diagnosis

Assalamualaikum and hi all.

** Adriana’s latest update to get OKU sticker for vehicle is done!! Thanked God for everything. For your record, I went so places, called few peoples, been here and there to settle it down. Luckily my youngest sister is around and helped me took care of Adriana. God bless my sister.

Seizures

Adriana had her first seizure when she was one month old, on 10^th May2014. It happened right in front of the doctor during her second Hepatitis B follow up. I had no idea and really shocked when she got the tonic seizure attack.  Very fortunate to have my sister, Sofya who’s just graduated in medical school, helped me back then. I think she might have been attack few times, but I did not that time. I really have no idea what is seizure all about. Then I did some research ad study few types of seizures. At the very least, I have already known if the doctor tells about it.

The doctor asked the ambulance sent us to emergency and referred us to the Putrajaya Hospital.

Next, the journey of hospitalization begins.

Adriana has been warded on and off frequently. Been hospitalized six times since she was born. Fortunately, I’m a full time mommy and able to take care of her 24/7 whenever and whatever happens.

From then, she started her first epilepsy medication. She has tried so many medicines – phenobarb, epilem, prednisolone, chlonazepam, carbamazepine and topamex. Almost everyday she will get minor and spasms attack. Prof Wong suggests to have a combine suitable medicines and monitor her seizure progress. Her current combination medicines are chlonazepam(since her first hospitalized), carbamazepine and topamex. Oh ya, I almost forgot she also took hydrocortisone as her cortisol level was very low. But the medicine has been cut off since November 2015 and now her cortisol level becomes normal. Alhamdulillah.

The diagnosis

After few times her Endocrinology follows up and my cousin’s advised (she’s a specialist Paed ICU), Adriana gets her first Neurology follow up under Prof Dr Wong at HUKM. He is a very kind and helpful doctor. Indeed, he helps us a lot. So we went for couple appointments and later he found out the syndrome after carried out his research. I still remembered the day he told me, on 21^st January 2015, that Adriana is officially diagnosed with Aicardi Syndrome with infantile spasms. I kept calm, but honestly it turned to be speechless.

When we got back home, my eldest sister, who’s also a doctor, Dr Wafira, an ICU specialist, accompanied me during the appointment explained again.  Actually she’s already aware and knew it. She said, “Don’t worry. Though Adriana will completely dependent on you, she will be fine. You will be fine.” I hugged her. No words can describe how I feel.  Thanks for comforting me, even with a lie.

She told me about her quality of life, prognosis. I lost my word. I don’t know how many times I have lost my words, lost mind. Seriously, I don’t bother much about that, about her life span. All I need to do just take good care of her. That’s the matter. I know my family worried about me, my future and our future. My sister does not want me to put high expectation on Adriana.  She wants me to be prepared. If worst case scenario happens, I won’t be so devastated. 

Frankly, I took some time to accept. Yes, it’s not easy. But it’s not that hard as long you keep faith in Him. Trust on Him. He’s the Best Planner. He knows I am able to handle and face the test given.  Oh girl, please be good. I know you are very understanding and a good girl. Adriana is a really easy girl to handle.  Although she could not still able to sit, stand up and walk independently, I am so grateful to have her in my life.  

May miracle happens.  Pray for Adriana.

Hugs & kisses!

Xoxo

Mardhia & Adriana