This week has been full of doctor visits. We started off on Tuesday going to see Dr. Bell, Stryder’ neurologist. Stryder had what appeared to be several seizures over the weekend and the Dr. told us to call if he shows any epileptic activity. I was anxious about the visit for several reasons. One of thoughts was that we were just there a few weeks ago and have a follow up scheduled for Feb 15. I don’t want to be one of those moms that goes to the Dr for every ache and yet, seizures are very serious. I am not the best at judging what a seizure looks like, so I started filming them. One of the other things I was anxious about was if we had to change his medication. Keppra has been great for Stryder. Just over a year ago, right before he turned four, he could not speak, his words were not words we recognize as intelligible. You can see what I am talking about in this video:
I feel that although Keppra ha not stopped all of the seizures, that it has helped rewire some of his brain and if we don’t keep it, his speech will revert back to this, which is common in Landau-Kleffner Syndrome. Stryder tolerates Keppra well, while some people do not. He has come so far and this video reminds me just how far in a short period of time.
As it turned out, my worries were all for nothing. After hearing my description of his seizures the Dr. said that Yes, they were definitely seizures and then asked why we didn’t call earlier It was a holiday weekend, so I called as soon as I could. He understood. Dr. Bell explained why his arm would fling up, and his head would turn towards it, arching his back, grinding his teeth and then wetting himself. It helped me understand a little of how the brain works.
As for the medication, Dr. bell agreed to not take him off Keppra and just add another. He started Stryder on Clonazepam. He said that Stryder will either be knocked out from it or stay awake; Stryder stays awake. I have been giving it to him at 8 and he is still wide awake at 11. He’s a good kid, and I’m up anyway, but he just lays in bed, wide awake while his daddy is snoring in the room.
Dr. Bell is the most amazing and caring Dr. I have ever known. He asked all the right questions and confirmed everything I thought. I told him about our Doernbecher visit and how Dr. Wray said to contact all the moms I could and ask about LKS through them because it’s a rare disease the Internet just won’t be accurate. I told Dr. Bell my findings and how we hear of all these relapses and permanent damage and he agreed, but he did know one child who repaired it all. I hope Stryder will be a success story, but I know we have to maintain his meds and they will not work forever, which we have already found. It will always be a battle chasing after seizures we can’t see. All things Dr. Bell stated. It is scary knowing that it can turn devastating quickly, but Stryder is a fighter and so eager to learn and teach us.
Yesterday we went to see Dr. Schirripa, Stryder’s geneticist. He emailed last week and said that he had results to go over. In a nutshell, the results showed that something is wrong, we just have to find it.
First, the CBC came back saying he was dehydrated, although it’s a running joke in our family that he drinks more than anyone we know. It also showed that he has low Lymphocytes:
- A low lymphocyte count indicates that the body’s resistance to fight infection is substantially reduced, and one may become more susceptible to certain types of infection, namely cancer and tumor.
This has been a common theme in his blood work. We already have Cytokine results showing that his immune system is week and activated. He is concerned about this particular result though. Some of the other CBC counts were also high and Stryder’s CBC counts have always been abnormal.
Stryder’s Amylase also came back high, which again, we know he has a pancreas problem, we just don’t know what. And then quite a few of the plasma results were LOW – Dr. Schirripa said it was interesting because when there are problems, usually those numbers are high, not low. So of course, he reiterated that Stryder is an unusual case and there are alarming results that we have to find the issue for to prevent instead of always treating.
More testing to go- the next steps are to rule out some serious diseases and go from there. Once we figure out the main cause, then we can know how to fight all these bad results.
- Hemoglobin: High
- Hematocrit: High
- MCV: High
- Lymphocyte: Low
- Vitamin E: High
- Pancreatic Amalyse: High
- Arginine, Plasma: Low
- Alanine, Plasma: Low
- Glutamine, Plasma: Low
- Methionine, Plasma: Low
- Threonine, Plasma: Low