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

Aysha - 06/09/10

Aysha had an MRI today. As per the neurosurgeon, the MRI did not show any improvement of the AVM and also there was not any further growth neither. So its a matter of continuing to keep monitoring. Next MRI is planned for March.
Aysha has an EEG scheduled for next week, after that the plan is to taper of the medication she is on. The medication is to keep gelastic seizures from occurring. Therefore the tapering will have go slowly.

Aysha - 05/01/10

Aysha's results for the CT scan did not show anything alarming. The doctors stated they did not see any swelling or bleeds.
Aysha also had appointments with the neurologist at Childrens' Memorial and neuro-ophthalmologist. The plan is for Aysha to be tapered off the Clonozipam medication after school is done for the year. The side-effect of this drug is tiredness and slower processing of information. This is also something school nurse and teacher have mentioned about her.
Opthalmologist's test showed gradual improvement of her convergence vision problems. She will have to continue doing her eye exercises along with the other physical therapies for muscle strengthening.

Aysha - 04/21/10

Aysha has a CT scan tomorrow. School nurse noticed some twitching of her eye while she was reading. The urgency was from concerns by neurosurgeons. An appointment with the nuero-ophthalmologist was moved up to next week as well. Her vision has not really improved at all, in particular is focusing on things that are closer to her. She has problems with convergence.
She will also have to start physical therapy as her left side is noticeably weaker. This is causing various different muscles to not be developed properly.

Aysha - 03/14/10

Aysha will have MRI/CT scans in 3 months again to continue to monitor the still existing AVM. There seems to be some confusion about the status of her AVM from family and friends. So, the latest procedure done is trying to remove the last part of the AVM. But this process of using radiation takes 2/3 years, meanwhile the 1cm AVM is still there with risk of bleed. Since the best option is not available to us (location is inaccessible), which would be to remove the whole AVM at once, we are left with embolization and radio therapy.