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.