My son, Jacob, does not have a diagnosis of Bipolar. What he does have is called Batten Disease. It is a rare progressive neurological disease that has no treatment or cure. This disease takes away the child’s abilities to see, walk and talk. It causes seizures and dementia.
Jacob will be eight this month and thankfully he can still see, walk and talk! Another part of this disease is behavioral issues and we certainly have that going on with him! A little bit of history; Jacob was born 4 ½ weeks early but healthy. Very soon after his birth, he began to have problems that eventually led to a diagnosis of Cerebral Palsy (CP) at the age of 15 months. A feeding tube was places at 20 months old and he started walking on his own at 33 months old. He has always been globally delayed which means that cognitive, fine and gross motor skills are affected. He began to have seizures at age 4 ½ and was diagnosed with generalized epilepsy.
I always had a feeling we were dealing with something other than CP and even the neurologist he was seeing questioned it but even he could not figure out what despite some genetic testing. We ended up having to change neurologists because Jacob needed a full time local one. I convinced him to do specific testing despite his strong will against doing so. Imagine his shock (and ours) finding there actually was something bigger!
I will never forget the day we had been called in to his office. It was April 15th, 2008. A day that people recognize as the dreaded tax day became the date that my husband, Rob, and I were given the most devastating news. At the time, we had one older son, a younger daughter and I had recently found out I was pregnant. If that was not enough of a blow, my husband lost his job after 17 years at the same company. I was in total denial trying to find any way out of him having Batten Disease. It just could not be! It took a while for me to be able to accept this or at least accept it enough to say he does have this and I am going to fight to save him!
As I mentioned, we are dealing with behavior issues. I was at a breaking point and Jacob was referred to a behavior specialist. I did not know then that this Dr. was about to change my life. He did not know Jacob was going to change his! At our first appointments, the Dr. thought he would just give us some ideas to try and manage the behaviors. He thought we would only need a few appointments.
I thought I was a bad parent. I thought that even though I was trying, nothing I was doing was helping and I felt like a failure. I was still pregnant at the time we started seeing this Dr. and of course emotional which did not help. Of course, Jacob was a charmer for the Dr. He was not going to “perform” for him when we were at the office. We even brought our daughter who is three years younger to see if he would do to her there what he does at home. He was going to be the sweetest, kind and sharing brother while there! Thankfully the Dr. was listening to us as we tried describing what he was doing at home. We got past the few appointments he thought we would need and he did start seeing some of what we were dealing with. He had never heard of Batten before but we were still learning about it so we taught him some things along the way. He was very intrigued by Jacob and even more so as more behaviors were seen by him and better described by us.
Yep, that’s the word he started using, although I was not surprised as we had heard that countless times before! He once told us that Freud would be confused! I started learning it was not my fault. It is the disease’s fault. It was doing things to him that he could not control and neither could we. Jacob’s behaviors mimicked ADHD, Autism and Bipolar although he did not have enough of any one of them to say he had one for a diagnosis (not that we were looking for more to add to the many diagnosis’ he already has!).
Being all mixed up, treatment or how to deal with the behaviors, was tricky. After trying and failing all attempts to care for him without medicating him, we broke down and started him on a low dose. He was already on numerous other medications for seizures and other things so we proceeded with caution and under supervision of the Neuro. The drug barely took the edge off his moods so we increased the dose. Of course Jacob was not going to let us think we were winning! He began to have OCD behavior which mostly surrounds food. I mentioned before he has a feeding tube which is his primary source for nutrition but he can eat some orally. Now we had an even bigger battle! So we agreed to add yet another drug because I could not handle things the way they were. I mean, how often can I go cry in the closet?
That drug did help some…at first. The Dr. was amazing. He would call me at home even on the weekend to check in so I asked him at one point if he could move in the empty house down the road! As much as I was joking, in my mind, I was desperate for help.
The meds are working some but Jacob continues to have behavioral issues. The things we continue to see are hitting, screaming, biting, spitting, throwing things, hitting himself, scratching and of course the angry faces! He would live at the “naughty wall” if we put him there for everything so he only goes there for aggressive behavior towards others or tries to damage something in the house. There is a twist on his behaviors. He does not have problems at school and if he does, it is mild. We do know that the big difference is school is very routine and kids with Batten really thrive on strict routine. As much as I wish we could have a very strict routine at home, there is only so much we can do since we have three other children. He also has sensory processing issues that add to the big picture. He gets overloaded easily and depending on when and where depends on how he will react. He is losing his short term memory so he also becomes repetitive or frustrated.
I can get angry and I can go back in to complete denial. I can still find myself crying in the closet. I have to focus on caring for him along with being a wife and mother to 3 other children. I feel so bad for my other kids as they have to see all of this and even be on the other side of Jacob’s hand. I know they all share a special place in Jacob’s journey and someday will be stronger because of it. Some days the emotions are just too much for me to handle.
I am thankful for the support we have with family and friends. I have met so many Batten families who help guide us. Some have one child and others have more than one child with Batten. Some are still fighting and many have lost their battle. I listen to what they say and one of the things they have said that keeps me going when dealing with all of this behavior is there will come a day that he will not be able to yell, scream or hit and I will miss those days. We also found a program that Jacob qualified for and get additional help in the home which has also changed our family in many positive ways.
I try to focus on the good things with Jacob which is not always easy. He is an amazing child who has changed my life profoundly. As much as I wish I could change all of this with him, I can’t. It is all part of who he is and the way God intended him to be. It is how we take the time to enjoy the little things in life and not taking things for granted that make a difference. I love hearing how he has changed the life of others and how other children have called him their hero. I am truly Blessed to be chosen as his mother.