Melissa Kerkhove was born on July 28, 2004 after what seemed to be a normal labor and delivery. From the get go I questioned if she was OK. She slept from birth 10-12 hours straight without eating. She had very poor head control and she would always try to arch her head back. She was constantly thrusting her tongue out and nursing was very, very time consuming for her. There were days I questioned if she was blind as it seemed some days that she couldn’t see anything in front of her face. She couldn’t sit up with support. She hadn’t rolled over or for that matter wasn’t even trying. She didn’t even move when you laid her down. We did get a little interaction out of her and occasionally a smile. After Christmas I started asking every health care professional what they thought. Everyone thought she was just a little behind.On February 14th of 2005 Melissa started having infantile spasm seizures. These seizures are very different then any other kind of seizure. Of the children who have these seizures about 80 percent of them have an underlying disorder such as a brain injury or a metabolic disorder. Of all of our children Melissa is the only one who does not have the variant form of PKU, a metabolic disorder, this wasn’t what was causing the problem. In the 80 percent that have an underlying disorder there is some form of mental retardation from mild to severe. The other 20 percent of children seem to be developing normally before the seizures start and when they get the seizures under control they seem to go on to develop normally. Melissa seems to fall into the 80 percent as she wasn’t developing before the seizures started.
The beginning of March, on the same day, Melissa had her first two grandmall seizures where she quit breathing and turned blue. This was her first hospital stay and was the beginning of all the testing she has gone through this year. They did an MRI, EEG, and countless blood tests that day. The MRI and blood tests came back normal her EEG (brain waves) showed the classic pattern of a child with infantile spasm seizures. The treatment option we were given for the infantile spasm seizures was called ACTH. ACTH is a steroid they give through injections every day over an eight week period of time. We were told that even if they got the infantile spasm seizures under control it wasn’t likely that Melissa would start developing since she wasn’t developing before. With side effects such as growth issues, bloating, high blood pressure, brain atrophy, congestive heart failure, eating disorders where quite often a tube is put in for them to eat, and possible death, this all with only a 25 percent chance of stopping the infantile spasm seizures we opted not to do the treatment. We were sent home with Melissa on Phenobarbital to try and control the grandmall seizures. I started doing tons of research and joined a group on the Internet of parents who have children with the same kind of seizures. This group has been the greatest asset to us as we are able to hear first hand what they are going through while they are at home with their children. During this time we also continued to seek alternative treatment for her health issues.
The next few months we watched as Melissa became lost in herself. The life had left her eyes, she was lifeless and had no response to anything. She was having 6-10 infantile spasm seizures a day and every so often was still having grandmall seizures. She didn’t even have the head control of a newborn. She didn’t move at all. If she wasn’t being carried in the Maya sling or Moby Wrap she just laid or sat in her swing and stared. One thing Melissa did have going for her was that she could nurse. Later we were told by her therapists that most kids who have the same issues Melissa does tend to be on feeding tubes. They are so impressed with her oral development which they feel is there only because she is nursing.
In May she started Physical Therapy(for movement), Occupational Therapy(for social contact), and Speech Therapy (for communicating/eating) through the Birth to Three program. We also discovered the end of May that Melissa was loosing weight.
In June we went to Mayo Clinic in Rochester MN two times. Countless more tests and still no more answers. At this point she was still getting worse and I questioned if she would even make it to her first birthday. She had been through so much the seizures, the testing, the traveling was all so hard on her little body. I decided to wean her off her seizure medication in June. We saw some of the life come back to her eyes.
In July we spent another night in the hospital as she wouldn’t wake up. She was still loosing weight. She started out at 9lbs 1oz at birth by her first birthday she didn’t even weigh 14lbs. A week before her first birthday after trying other things she started getting 9oz of goats milk a day and she started growing again.
We felt like we needed to try everything we could that had the least amount of side effects before opting for things with more side effects. So in August we went to Madison WI for almost a month to do 40 treatments of Hyperbaric Oxygen Therapy (HBOT) on Melissa. We saw changes after the HBOT she could hold her head up, her eye sight was never in question anymore, some smiles, some reaching for things, paying better attention to things around her, no more grandmall seizures, and a small reduction in infantile spasm seizures!
In October we went to IL for my grandmother’s 90th birthday party and I wound up taking Melissa to someone who has extensive Cranial Sacral training through the Upledger Institute in FL. After just two appointment with her Melissa went through a growth spurt, there was even more life in her eyes and her seizures went down to one a day or occasionally one every other day. We continued to see changes in November.
In December I decided to go back to IL and do more Cranial Sacral Therapy on Melissa. After that her seizures went down to about one every other day, she smiles and laughs every day, she is trying to roll over, and she wants to be part of the family. Her Physical Therapist commented on how Melissa wouldn’t work for her when all the kids were in the other room then when they came in she decided to work (I guess she thought she was missing out on all the fun).
At this time we have opted to hold off on doing further testing on Melissa as we are down to biopsies and invasive type tests. I was told that these tests are really for diagnosis purposes as most of the things they find through these tests don’t have any treatment and a lot of them are terminal. We don’t feel we need to put Melissa through that just to get a diagnosis. She has all the symptoms of a person who has hypo-tonic(weak muscles) Cerebral Palsy. In my heart of hearts I feel she has a brain injury from birth or before (there were some things as a mom that I feel were off about her pregnancy and birth) that has been missed. In talking with many other parents it is very common to miss a brain injury on the tests.
We don’t know what the future holds. Long term I feel Melissa will make enough improvements to be able to take care of herself. We have no way of knowing how far she will develop and everyone has been kind enough to not try and speculate. We have had door after door opened for Melissa to do different kinds of treatment. We continue to research and listen for new ways to help her. We would ask if anyone hears of treatments/ fund-raisers/articles/etc. that may be helpful they would share with us. We would rather hear about the same thing more then once then to miss something altogether. We don’t mind talking about things so please, feel free to ask us questions as you have them. Melissa is a very special child who has brought much love and joy into our lives and her special needs have taught us so much.
For what is going on with Melissa now check out the updates section.