This Blog is being created to update Andrew's family on his progress at Detroit Children’s Hospital. This blog was created by Andrew's sister, Katie, who will try to update the blog daily. It's difficult for our parents to keep everyone updated, so this blog should be of help.
Most of Andrew's family is pretty much updated on what’s going on up to this point. I will start from the beginning so friends of the family can get an idea of what’s going on.
For those of you who know Andrew, you know he already has a long list of medical issues that originated when Andrew was a child. Andrew was diagnosed with PANDAS ( Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and ADHD back in 1999. In May 2004 Andrew was airlifted from West Branch to Detroit Children's Hospital for a grand mal seizure that they were unable to get under control. They ended up giving Andrew a medication that induced coma because all other medications failed to stop the seizure. From that point, we anxiously waited for Andrew to wake up. From there it was a matter of getting him on the right concoction of medications to keep him stable. At that time brain surgery was discussed and he did have a brain biopsy done. Andrew was in the hospital for a month, his diagnosis being Encephalitis, inflammation of the left side of the brain and Epilepsy.
In November 2006, Andrew was admitted back to Children's Hospital for seizure like activity occuring in his leg. His left leg would tense up and then relax; he was unable to walk and he had no control over his leg. They got this under control with more medication. After this hospital stay is when Andrew developed the limp in his walk, but at this point his left arm was still fully functioning.
In July 2007 Andrew was taken to Children's because he was lethargic. MRI, EEG, EKG were all done. Andrew was released a couple days later.
Somewhere around 2006-2007 Andrew was admitted because he was having issues with his hand. His fingers would open and close and he had no control over it. During this hospital stay is when he was diagnosed with Myclonus, which would explain what was going on with his leg. At this point most of the function of his left leg and arm stopped working. He went through physical therapy and is still able to walk, but his control of his arm and hand is very minimal. Somewhere within the last 3 years Andrew was also diagnosed with Pseudoseizures.
(That is a little of Andrew's background up to this point).
The weekend of June 24, 2012 we celebrated Father’s Day at my mom’s house. My Dad, Marty, Andrew, Liz, Phil, Gracie and I all Barbequed. We noticed at this time Andrew's hearing seemed off. He had been swimming a couple days before and we thought he got water in his ears and that’s what was going on. From this point my Dad made Andrew an appointment with an ENT to look at his ears. The doctor said there was no fluid in his ears and called the Mind Clinic to make an appointment. Andrew continued to go downhill from June 24th, which resulted in my Dad admitting him to Children's Wednesday morning. Once Andrew was admitted an MRI, EKG, EEG were all done. It was confirmed Andrew had a Stoke, somewhere within the last week. By Wednesday night Andrew could not talk, could not hear, he couldn’t communicate with us at all. He couldn't really swallow either. More tests were done, blood work was taken.
Thursday June 28, 2012
Dan spent the night with Andrew and said he did not sleep very well. Thursday Andrew's test results were reviewed. The neurology department is leaning towards diagnosing Andrew with MELAS Syndrome.
MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes) syndrome is a rare disorder that begins in childhood, usually between two and fifteen years of age, and mostly affects the nervous system and muscles. The most common early symptoms are seizures, recurrent headaches, loss of appetite and recurrent vomiting. Stroke-like episodes with temporary muscle weakness on one side of the body (hemiparesis) may also occur and this can lead to altered consciousness, vision and hearing loss, loss of motor skills and intellectual disability. MELAS is caused by mutations in mitochondrial DNA and in one patient, this syndrome has been associated with mutations in a nuclear gene, POLG1.
The diagnosis of MELAS is usually suspected on clinical grounds. However, confirmation of the diagnosis usually requires a muscle or brain biopsy. The muscle biopsy shows characteristic ragged red fibers; a brain biopsy shows stroke-like changes.
When Do People with MELAS develop symptoms?
MELAS can affect people at very different times in life, ranging from age 4 to age 40 or more. However, most patients with MELAS syndrome show symptoms before they are 20 years old.
What is the treatment for MELAS?
There is no known treatment for the underlying disease, which is progressive and fatal. Patients are managed according to what areas of the body are affected at a particular time. Antioxidants and vitamins have been used, but there have been no consistent successes reported.
So, Thursday the doctors tell Dan, Marty and Liz this information. Liz texted me this information and I Googled it. It was extremely heartbreaking to read that MELAS syndrome was progressive and fatal. Renee picked my mom up from work and took her immediately to the hospital. I went to the hospital as well after work.
The Geneticist came in and spoke with everyone for quite a while, getting all background information of the family and Andrew's entire background. To confirm MELAS Syndrome, a brain biopsy or muscle biopsy must be done. The Geneticist basically said don't jump to step C when there is still a step A and B. Step A & B being LAB tests. Step C being a biopsy.
Meanwhile, Andrew has'n’t eaten since being admitted Wednesday morning. The words that he could communicate to us were "I'm hungry", quite frequently. The Speech/Language Pathologist wanted to make sure if Andrew were able to swallow, that it would going into his stomach and that it wasn't going into his lungs (aspiration). They performed a bedside swallow test, which he failed. They decided to do a Barium Swallow test in which he is given food with dye in it, which shows up on an X-Ray video. This showed that thin liquids were going into his lungs. Therefore, he was put on a pureed diet with the requirement of all liquids being thickened to a honey consistency. Thursday night we ordered him Cream of Wheat and Tomato soup. Andrew was able to feed himself the cream of wheat and the soup. He did say "It's good". I was able to understand him for the first time.
Liz played Hangman with Andrew and he was able to play. He guessed both words "Franklin" and "Volleyball". She was working on reading and writing with him. as well. When asked, he was able to write his name and where he was at. He also was able to write the names of most family members when shown pictures of them. Some of the other things he wrote made sense, some not so much.
Friday, June 29, 2012
Dad spent the night with Andrew again tonight. (We want someone to be with Andrew at all times. When he was admitted Wednesday, that night while trying to go to sleep he would wake up and freak out not knowing what was going on, where he was at and then couldn't communicate with anyone. He is scared. Not to mention right after failing a swallowing test the nurse was going to let him swallow his seizure meds!) Andrew is old enough to consent for things now too, so we want someone there because it is crazy how people do not communicate at the hospital leading to mistakes. We can't afford any mistakes.
Friday morning, Hematology ordered a bunch of blood work. It took three people to get the job done, some blood couldn’t be exposed to light, some was frozen and some was tested.
Shortly after Andrew had an echocardiogram which came out normal. Andrew was then taken for an MRI which he had to be sedated for since it was over an hour long. Dad and Marty were with him all morning. I arrived around 5pm, just as Andrew got back from the MRI and Marty informed me they were waiting to take him for a lumbar culture (Spinal Tap). Andrew had a patch numbing the area for the procedure. Then, we talked to his neurologist and said we did want him sedated. During this time the Ophthalmologist was also in there trying to do an evaluation. Andrew had such a full day the last thing he wanted to do was cooperate with the Ophthalmologist. He tried and tried, Andrew pretended to sleep, as soon as the doctor left he popped right back up and turned the TV on. Andrew is still in there somewhere! After the Ophthalmologist spoke with the doctors doing the spinal tap, they decided they would wait until they had an anesthesiologist and sedate him and do both tests at once while sedated. So no more tests for today, and not much goes on during the weekend.
They have been giving Andrew's meds to him through IV, his Zoloft is the only medication they can’t administer through IV so he was taken off since Wednesday. After dinner, he was starting to twitch in the neck, mouth and tongue a lot repeatedly, if you know Andrew you know what I'm talking about. Later that night, the residents talked with Dad, Liz and Phil about the twitching. In response they gave him some ativan and were able to give him a dose of zoloft crushed in some yogurt. He also is being less cooperative and seems agitated when he doesn't get his way. You can tell he is scared and wants to know what’s going on. We can't tell what he hears if anything, we don't think he knows he had a stroke; he definitely doesn't know anything about the possible MELAS Syndrome diagnosis. It sounds like genetics wants to do more testing still because there are a couple markers Andrew is not showing.
Its Saturday, June 30th now. I have not been up there yet, I am planning on going up in a couple hours. I have talked to my mom, she said when he is sedated for the spinal tap and ophthalmology exam they will also be doing a muscle biopsy.
Liz and mom are now here. Andrew seems to be communicating a little bit more today. He is very adamant about doing what he wants to when he wants to. He does not hesitate to get physical in order to get his way.
Please say a prayer for my brother. I will update the blog tonight. Feel free to leave comments or ask questions.
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