Jenna's Journey with Moyamoya Disease

Dec 9, 2015

By: Jenna


 

Hi I am Jenna's Mom, Kristina and I run this page. I am so excited to be able to get Moyamoya Disease listed on Disease Maps. Please read Jenna's Story and contact me with any questions or to talk. Our Facebook page is listed at the bottom. 

 

     Approx Oct 2012 my 7yr old daughter Jenna started experiencing temporary limb numbness, sometimes causing her to fall, along with this I explained them to her pediatrician as "episodes" occurring once every 3-4 months. The “episodes” came on suddenly without warning only effecting the left side of her body beginning with limb numbness, tongue numbness, slurred speech, and began to resemble if she was to have a stroke and seizure at the same time. During the “episode” she is awake, fully conscious, and able to try to communicate but loses control of her body. We couldn't identify anything that brought them on and they would last 5-10min with an after effect of a headache. I would give her Tylenol and she would be fine as if nothing happened. From 2012 to around May/June 2013 her pediatrician said it was hemiplegic migraines and she would grow out of them but since they happen every 3-4 months and Tylenol took away the headache afterwards they didn’t seem to take it too serious. Within that time period I brought her back for a few different appointments for the episodes and limb numbness until they sent her for a CT scan in July 2013 that came back normal, the episodes were still happening, so that's when they referred me to a Neurologist at St Christopher's Hospital to get her seen. Our first appointment at St Chris's wasn't scheduled until September 2013, per their scheduling. In August 2013 we took her to the Allentown State fair and she had a bad “episode” the emergency workers looked her over and said after she appeared ok but as a precaution we should have them look at her in the ER. We were over an hour away from home 11pm at night so we went home and took her to St Chris’s ER the next day home in Philadelphia on 8/29/13. They said she appeared ok and consulted with the Neurologist on call which happened to be the doctor we had the appointment with in September, Dr Caravhalo, so she said to bring her in that following week to see her instead of waiting for the appointment. During the 8/29/13 ER vist they diagnosed her with “Hemi-plegic Migraines and started her on the Cepro medicine. We took her in to the neurologist next week as instructed and explained the whole history and she said it was hemiplegic migraines and keep giving her the medicine prescribed in the ER for it. She said, “Because the episodes only occur every 3-4 months it will be hard to tell if the medicine works so we will just have to wait and see. Bring her back in a couple weeks to see how she’s doing.” I asked if they could do tests and she said, “There was no reason for it because she didn’t lose consciousness during her episodes and could communicate so she wasn’t having seizures.” We went back in a few weeks later and I told the doctor once again, I am very concerned even though she hasn’t had any episodes that I know of there is no way to tell the medicine is working for months and the last 2 episodes she had were bad and one of them looked like the right side of her mouth drooped. She agreed to do the tests for me and scheduled a MRI of the Brain. Even though after weeks of begging for tests it still took me 4 more months to get the MRI scheduled and had to get the Neurology hospital director involved since the doctor didn't see it as necessary. I scheduled the test for an MRI on 2/28/14 with sedation because Jenna is so scared of everything and freaks out. We arrived and it took 4 people to hold her down to put an IV in because they didn’t give her anything to calm her beforehand knowing how scared she was. After the IV was in she sat up screaming, crying, and holding her head saying her head was killing her. The nurse said they gave her Profofol and it would help her headache, it did. She had the test done and they said while she was in there they decided to do a MRA so she didn’t have to come back again. She came out of the anesthesia and we were waiting for her to be allowed to go home. The nurse came in and said to call her Neurologist on Monday to let her know the test was done. A few minutes later they said we are calling her instead. A few minutes after they said the nurse and doctor went up into the hospital to find her Neurologist and bring here down to us and we couldn’t leave. The nurses, Radiology doctor, Radiology tech, and her Neurologist all came into the room. The neurologist said, “Looking at her MRA it is very clear that I have misdiagnosed your daughter.” Your daughter does not have Hemiplegic Migraines as I previously though and she needs to stop taking the medicine I prescribed for her immediately. She has a very rare brain disease called, “Moyamoya Disease”. The episodes you have been describing to us all along have been mini-strokes (TIA’s). Moyamoya disease is a progressive disease with no cure, no reversal, and currently they do not know what causes it. Moyamoya Disease is when the carotid arteries in the base of the skull leading into the brain become narrowed in time causing them to become blocked and eventually close depriving the brain of the blood and oxygen it needs to survive. Patients with this usually show symptoms of frequent headaches, migraines, hemi-paralysis, limb numbness, slurred speech, facial drooping, TIA’s, severe strokes, even death. The only effective treatment available is surgery. She would have to immediately begin taking 81mg of baby aspirin daily and would be on it for the rest of her life. They also put her on a blood pressure medicine Verapamil 80mg daily, a 40mg pill 2x a day. She told us that the mini-strokes (TIA’s) she was having that whole year did not do any significant damage but there is a small contusion (stroke) that was not recent but they can say it did happen within the last 6 months and because of the contusion her left side of her body’s response time is slower than her right now and it could also affect her behavior. We had to take her to Boston Children’s Hospital to have her brain operated on both sides. She had bilateral indirect bypass surgery on 4/1/14. There are two main research Hospitals for Moyamoya. They are Boston Children's Hospital and Stanford Hospital in california.

12/9/15 There has been many ups and downs getting used to life with Moyamoya. Jenna's surgery went well and her 1yr post Op results were great with lots of new vessels and bloodflow. She is tired often, frequent small headaches, and some limb numbness associated with the migraines.

 

Please follow Jenna's Journey on Facebook!!

http://www.facebook.com/jennasjourneywithmoyamoyadisease 

 

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