Never Never Give Up!

greg_flowers_bgWe love our children with all of our soul and we would do anything for them and give them anything. There are times in life that our future plans and hopes and dreams don’t turn out the way we want.

On Monday, January 13th, 2014 we were called by the crisis counselor at Greg’s school. Evidently, he was experiencing visual and auditory hallucinations that were telling him to hurt himself and others. We were flabbergasted and unsure of what to believe. We picked him up from school and took him home….He had an afternoon appointment with a new counselor (as some of you know this is our 4th counselor in as many years) to help him with some social awkwardness and to help him with the effects of being bullied. When we met with her she advised us to take him to the Emergency Room. So we did. He was admitted to the locked Psychiatric ward for possible new onset Schizophrenia. He was put on an anti-psychotic medication and an anti-depressant.

The next day at visiting hours (only from 2-3pm and 7-8pm) he was really “out of it” from the medications. He said that the hallucinations were still present. We met with the Psychiatrist and the Social worker who advised us to seek help from the Maryland Psychiatric Research Center (MPRC) in Catonsville (as they are the experts on “first break schizophrenic psychoses”). We asked for an MRI and EEG to rule out anything medical. During the evening hours he was more alert but a bit anxious. Wayne was having outpatient surgery the next morning and Greg was worried about him.

The next day a pediatric psychiatrist examined him and decided the MRI was not needed and that Greg had psychosomatic schizophrenia (that it was not real, but to Greg it was real) and they took him off of the anti-psychotic medication. They still wanted us to go to MPRC for follow up (first appointment Jan 30th). I told the first psychiatrist I still wanted the MRI and EEG.

Thursday, during visiting hours, at our insistence, they finally did the EEG and MRI. They were also able to arrange for a home school teacher to come to our house so that he would not have to return to school where he felt bullied and anxious. I was able to arrange with my work to reduce my hours to Wednesdays only. Wayne was able to arrange with his work that he would work from home on Wednesdays. We told Greg that we would change his education focus from academic to cultural. We would go to museums and take day trips to gardens and nurseries. He was so relieved that he did not have to return to school but that he would still be able to get a diploma and graduate. That evening Greg shared with us that he was still hearing the voices.

Friday, the plan was to visit from 2-3, then talk with the doctor and then take him home on an anti-depressant with counseling in place until we could meet with the experts at MPRC. We went to get him and meet with the doctor. Everything was set to go and we asked about the MRI and EEG results. “The EEG was normal but the MRI showed some abnormalities.” When we asked what they were she stated she was not a neurologist and we should follow up with Johns Hopkins or Children’s Hospital in DC.

The discharge process took so long that we ran into the psychiatrist one more time. She mentioned that the Adult Neurologist could meet with us in an hour if we wanted to wait for her to explain the changes. We did. She stated that he had changes in his white matter and that it was called Leukodystrophy (Leuko meaning white and dystrophy meaning not growing). Wayne asked if it was like MS, and she said somewhat but that this was a breakdown in the myelin coating of the neurons. She didn’t express any alarm and said that he would need to have some tests done to confirm if this was in fact what was happening. We left.

We had to stop at CVS to pick up his prescription. While I was waiting I got out my phone and googled “Leukodystrophy”, as I had never heard of it. I almost fell to the floor. “It is a rare degenerative brain disease that has a very poor prognosis that results in an early death as there are no cures at this time.” I could not believe what I was reading. The links were taking me to clinical trials on the NIH and JHU websites. I got back in the car with a straight face and drove to McDonald’s to get “dinner” and then drove home. Greg ran into the house to get his phone and I grabbed Wayne before we went into the house. I told him what I had found on my phone. Tears were shed and then we went inside to research what we could.

The more we read, the more things started making sense. His drop in school performance and ability, his memory problems, his difficulty with fine motor skills (like buttoning shirts), difficulty with movement (he used to be such an athlete), the tremors in his hands, the mood swings, the trouble he had with peers, the staring at people (was to calm the voices), the hallucinations….all of it is related to the inability of the neurons in his brain to make smooth connections.

Three days later, he was admitted to the JHU adolescent unit with Neurology and Pediatrics following him. They ran a battery of tests, including blood work, urine, and an additional more sensitive MRI. The nurses were fantastic, especially Sarah and Claire! They know how to relate to teenagers and they were upbeat and positive and soooo kind! We met with a Neurologist, that specializes in Leukodystrophy (there is a clinic at Kennedy Krieger Institute), a Psychiatrist, Physical therapy, Social Work….the gamut.

We came home without knowing which Leukodystrophy he has. There are over 40 identified leukodystrophies so they were using the tests to narrow it down to one. They said it would take about 3 days for the MRI results and up to 3 weeks for the blood and urine results. They had narrowed it down to about 8 types before we left.

We set up appointments for physical therapy (2x week) and occupational therapy (2x week) and counseling (1x week) and Personal Training (1x week) to help strengthen his core and give him exercises to help his fine and gross motor skills. Now that we know what to look for, we notice his tremors in his hands; and his legs shake without reason (clonus) and sometimes lock up on him in the cold weather. If it ever stops snowing, he will also be taking a pottery class. His home teacher comes on Wednesday afternoons to teach the only class he needs for graduation, Financial Literacy.

We have designated Tuesdays as his “cultural/ field trip day”. We went to the American Indian Museum (we were supposed to go to the botanical gardens but his legs locked up so we went to the closest building) and have plans to go to the White House and the Philadelphia Flower show.

On, Feb 11th we met with the neurologist again. Greg’s blood work indicates that he has Metachromatic Leukodystrophy, juvenile onset. He is not a candidate for a bone marrow transplant because his disease is too progressed. There is not an option for enzyme replacement at this time either. Basically, there are no clinical trials available at this time for him. Sooooo….we’re treating symptoms and he will be going to the Leukodystrophy clinic at Kennedy Krieger for follow up and support.

The genetics counselor asked Greg what he thought about his disease and how he felt knowing it will shorten his life. Greg simply said, “I am an anomaly and it is what it is but I’m not going to think like that.”

Needless to say, we’re stressed! We have a roller coaster of emotions. We are trying to stay positive and focus on the fight. We’re trying to maintain the abilities he has and we are gaining strength from his bravery. Someone said, he has been fighting this disease for 4 1/2 years, it’s only “new” to us. He probably finally feels like now we understand the struggles he’s been having and what he’s been dealing with all along. Now we’re all on board.

Speaking of strength and bravery, Emily has exemplified that and more. She has been so supportive of us and Greg. She has become more patient toward him and allows us to chauffeur him everywhere he needs to go with little complaining. She realizes how difficult the future may be but she is quick to comfort and remain positive.

So, we are asking for prayers! Lots and lots of prayers. For strength, for courage, for patience, but mostly for a miracle. We are thankful for all of your support and love and prayers!

We will Never Never Give Up.


Pam and Wayne, Greg and Emily (and even Chloe)