EEG Results and Ear Infection

We went to see Dr. Jasna Kojic and she informed us that based on Eli's EEG on Friday he has been having Tonic Seizures. So, they are weaning him off of phenobarbital and now we will try to control his seizures by Keppra and Lamictal. He is also still on Baclofen for his muscle spasms. Right now they also have him on Clonazepam to help with seizures and to help him sleep at night. Eli also takes Milk of Magnesia to help regulate him too. These Tonic Seizures cause Eli to looked like he has just been startled. All of his muscles tighten up and one leg kicks out, one arm is raised, the other bent, and then he holds his breath and looks frozen. All the while his eyes jump up and down very rapidly. Currently he holds this pose for about 3-10 seconds. She said it could progress and become longer. He seems to have between 3-10 of them a day. But since they happen so fast I am sure we miss some since we aren't constantly looking at him.

Apparently it takes a very long time to wean off phenobarbital. She reduced his dosage by 1/2 a pill and won't lower that again for a month. The new medication could take two months before it is therapeutic. Then, if that doesn't work, we can try another medication or get a VNS device (Vagus Nerve Stimulation) placed.

She basically said that Eli's seizures are getting worse and that is a bad sign. She said Tonic seizures are harder to control and are usually only present in patients with severe epilepsy which Eli now falls into. She also said that the progression is dangerous and could shorten Eli's life expectancy.

Then I went to Dr. Miles Landis' office because Eli has had a cough for over a week and a half now and is not getting any better. Eli stopped eating over the weekend and has lost two pounds. On Sunday I thought it was getting better, but then as we left the prayer service Eli threw up twice and started to cry. Eli currently does not cry unless he is in severe paid. So, I knew things were not getting better.

Dr. Landis told me Eli has two ear infections and was very dehydrated. So, if Eli doesn't eat well today and tomorrow he will need to go to the hospital for hydration and a possible temporary feeding tube. They would have done the feeding tube in the doctor's office, but they only had infant ones and he said they were too small. But, I did get Eli to take a 6 oz. bottle, so I hope that is on the road to recovery. Dr. Landis also gave Eli a Rocephin shot and he will be on Augmentin now too.

So, all in all my poor little man is not feeling really well these days.

Kaden was very good at both places, he just smiles at the ladies as they peer down at him. All the while enjoying his pacifier or hands.

“Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.”- James 5:16