Aysha - 7/26/2011

There have been no medical procedures since last post. Aysha's therapy sessions with OT/PT has completed. The progress is not easily noticeable, as she still has a pronounced limp and weakness on the left side. The left knee still hyper-extends. She is very hesitant in regularly using the left arm and hand. The fine motor skills on her left hand are very difficult tasks for her. For example, picking up large Lego pieces is quite difficult.
Aysha has started another therapy program, this one being Aqua therapy. Again, the intended purpose of this program is to have her use the left side more regularly.

Aysha - 3/23/2011

Aysha had a scheduled MRI today morning. She had been sedated for the procedure. After it completed, she was very weak and groggy. We met her neurosurgeon and were about to leave after consulting him. After going to the bathroom she wilted in her wheelchair. She either fainted or had a seizure. The sedation drug and the fact she wasn't allowed to eat or drink anything until 11 am probably contributed to this condition. She is being admitted for overnight observation.

Update: Doctors initially wanted to start seizure medication, but we had concerns about starting on this new drug. After discussing with them, it was decided that the medication will not be given as it was not proven that Aysha had a seizure episode.

The MRI shows that the swelling has increased in size. But as per the neurosurgeon, this is expected outcome of the radio therapy session.

Aysha - 02/02/11

Aysha is still struggling with strength in her left side. She does not voluntarily use her left hand for any activities. The fine motor skills in her left hand is minimal. She is going to OT/PT twice a weak and we are having her do additional exercises at home. Her left leg is still hyper-extending, but she does have more strength than before in her left leg muscles. Currently, she is using braces in her left foot/calf to stabilize the leg. She will be getting braces for her left hand to help improve the position and strength on her thumb and fingers.

Aysha - 11/03/10

Aysha has started physical therapy again. Her left side is still weak and not functioning normally. She has extreme difficulty using her left hand and will not use it on her own. Most tasks she is doing one handed. Her left leg is also weak, we are doing regular exercises to keep it as strong as possible. She still has a limp and the knee hyper-extends, she will be fitted for a brace tomorrow.
She is attending school, she goes to class with a walker to assist her.

Aysha - 09/29/10

Aysha had another CT scan last week. The swelling has not gone down significantly. The swelling is where the AVM has been treated with radiation and is the cause of the swelling. The neuro-surgeon is hoping the radiation is working. This area of the brain controls her left leg. She is having extreme trouble using the left leg normally. Also she has trouble using her left arm. At this time we don't know if this is temporary or not. The steroids to reduce the swelling has been tapered off. No further steroids are being planned.

Aysha - 09/08/10

Aysha will have another CT scan tomorrow (9/9/10). She has been limping a lot more lately. Her left side seems weaker. Will see what the doctor says after reviewing the scan. Nothing else to report now. We will also check if physical therapy needs to be increased.

Update: Aysha is being admitted now. CT scan shows edema in the brain. MRI, angiogram is planned. No further information at this time.

The diagnosis is that the swelling is probably from the radio therapy taking effect. They will start steroids to treat that. The thought is the swelling is in the area of the brain that controls her left leg/side. MRI will be scheduled for tomorrow.

Steroids have started for Aysha. It will continue for 10 days. MRI scheduled at 2PM 9/10/10. After review of MRI, release planned later in the evening.

Aysha - 08/07/10

There has been no tests or monitoring since last blog post. Aysha is being tapered of the clonazepam . By the time her school starts on August 24th she will have twice daily of the medication in half doses. Her weakness on her left leg is easily noticeable. We probably need to increase the physical therapy for that, will have to ask the doctors. Also the vision issues are noticeable, in that she has a tougher time to keep eye contact and focus.
I was reading an article in the Tribune about CT scans. It's about the amount of radiation one receives for one CT scan. One scan of the the head is equivalent to 115 X-rays. Aysha has received approximately 40 CT scans in the past year and a half. Add the actual radio therapy to that total also.

Link to study
FDA