February 19 2023

 

Home Care

Most seizures stop by themselves. But during a seizure, the person can be hurt.

When a seizure occurs, the main goal is to protect the person from injury:

• Try to prevent a fall. Lay the person on the ground in a safe area. Clear the area of furniture or other sharp objects.
• Cushion the person's head.
• Loosen tight clothing, especially around the neck.
• Turn the person on their side. If vomiting occurs, this helps make sure that the vomit is not inhaled into the lungs.
• Look for a medical ID bracelet with seizure instructions.
• Stay with the person until they recover or until professional medical help arrives. 

Things friends and family members should NOT do: 

• DO NOT restrain (try to hold down) the person.
• DO NOT place anything between the person's teeth during a seizure (including your fingers).
• DO NOT attempt to hold the person's tongue.
  
• DO NOT move the person unless they are in danger or near something hazardous.
• DO NOT try to make the person stop convulsing. They have no control over the seizure and are not aware of what is happening at the time.
• DO NOT give the person anything by mouth until the convulsions have stopped and the person is fully awake and alert.
• DO NOT start CPR unless the seizure has clearly stopped and the person is not breathing or has no pulse.

February 17 2023

 Aysha has been taken for the Angiogram at 9am. 

Procedure completed little while ago. She is in recovery.

But tests show NO new AVM. So that’s great news.

Aysha is being discharged as AVM is ruled out. Checks will be done by neurologists to check previous MRIs. Also follow up with doctors on current medications being taken. She will be on anti seizure medication for the time being.

February 16 2023

Aysha has been stable, alert, oriented since seizure event. Dr Majumdar and crew looking for images and information from previous MRIs and Angiogram. 

He wants to verify no clips/ stents are present and proceed with the imaging.

MRI will give more details but angiogram will give definitive idea on new AVM presence. If there is one or not. 

Root cause of seizure is goal. Hoping it’s medication related and not existing AVM or new one.

Dr Chenelle: neurosurgeon came by. He will need to look at MRI/MRA to understand more. Angiogram still might be needed. Can’t rule out anything at this point.

Angiogram scheduled for tomorrow morning 2/17.

February 15 2023

Aysha is at the neuro floor at CDH now. She had seizure today at NIU convocation center. Per witnesses she was convulsing so it was deemed as Gran mal seizure. MRI and MRA scheduled. EEG going now. They did CT and found AVM. But I am thinking it’s the original and only one. Possible side effect of medication she is taking , as I am being told. 

She had a ‘fainting’ episode few weeks back. She was by herself in her dorm room at that time. Checkups were done but nothing really diagnosed and found. Primary care doctor didn’t deem it necessary for MRI at that time. 

Aysha - 8/14/12

Aysha is having a cerebral angiogram today. This is to scope and view what is the status of the AVM after radio surgery two years ago. It will give us more information on if radiation is having the intended effect. There are many risks for this procedure, including stroke,hemorrhage, etc. She is in general anesthesia and the catheter will go from femoral artery all the way to the brain and AVM location. Procedure will take 3 hours.... Update GOOD News. The AVM has been eradicated. The risk of re-bleeding has been eliminated. MRI will need to be done to check status of edema causing left side weakness. Aysha has been going through ot/pt for the past few years. Last week she had Botox injected into her left arm muscles to loosen them up. Maybe this will improve the flexibility and allow her to use her left side with more ease.

Aysha - 11/27/11

There have been no procedures since last post and nothing planned until an MRI in March. It has been more than a year since the weakness with Aysha's left side limbs started showing. The progress has been slow if any at all. She goes to weekly physical therapy still. We also try to have her exercise at home. Its a dilemma with with getting the exercises completed as if we don't push her to do as much exercise as possible then her muscles stay weak and if we push her to do the therapies then she get emotional because of the pain and suffering. Her left knee is still hyper-extending when she walks. The left hand is especially concerning since she is hesitant and unable to use those fingers as needed. Its difficult to watch her try to do 'simple' tasks such as put on shoes, pants, jacket, etc. At this point, she does pretty much all things with her right hand only.
We will need to make appointments with psychologists about her emotional well being. We must get an evaluation on psychological status, since we don't totally know how the physical limitation is affecting her. Considering that she was a highly active kid before injury. From being able to do flips on mattresses, easily going back and forth on monkey bars, being first in races at picnics to not able balance properly on one leg.

Aysha - 09/07/11

Aysha had a scheduled MRI yesterday morning. This was also one where it required full sedation. The procedure went well, she has recovered and did not have the issues as last time. The edema near the AVM is still there. There is slight improvement from the previous scan. Lia met with neurologist and the neurosurgeon. They stated that the left side weakness will not improve until the edema subsides. So physical therapy will have to continue to keep the muscles as strong as possible.

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

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.

Aysha - 03/10/10

Aysha's radiation surgery went well as per surgeon. Doctors stated they were able to treat the target area they intended. She was sedated early in the morning and continued all day. She had a frame (halo type device) drilled to her head to keep it motionless during MRI, CT scan and actual radio therapy.
She is in PICU currently, the sedation is slowly wearing off. She has slight fever, vomited a little bit and complained of pain in back of head. Doctors are checking, but these are expected side effects. She has been communicating well and in good spirits.

Aysha - 02/18/10

Update: Surgery has been scheduled for 3/10/10.

Its been awhile since last post. Aysha had another appointment yesterday with the neurosurgery doctors. The doctors met with all their colleagues and reviewed her case. The options they are suggesting is radio surgery. In actuality, options are limited given the situation. Another embolization is highly risky if not impossible now. Even radio surgery has too many negatives for a parent to think about. This procedure will aim to remove the remaining AVM in 1-4 year period. Of course, radiation is being introduced to the brain.... chances of tumors, etc. The site of the AVM can have adverse effect on her vision and left side mobility, which has already shown deterioration.
Surgery is being planned mid March. Please pray for her.

en.wikipedia.org/wiki/Gamma_knife
http://www.gammaknife.org/lgk_patients_stream.wmv
http://www.uchospitals.edu/online-library/content=P08476
http://www.irsa.org/avms.html