Anyone been through kid having lumbar puncture? (spinal tap)

Re: Re: Re: Anyone been through kid having lumbar puncture? (spi

Submitted by Essie on Sat, 2006-11-25 - 06:10

Hello Mamma Bear! Yes, I have a blog too. It's on Essie's Blog. I haven't described too much of the first week. So I'll quickly tell you. It's nothing as dramatic as what you went through (I read your blog), and I really feel for you. I'm very happy that your son was okay after every episode, and do understand your fear each time he sounds or looks funny. I have that too, and not even because of dangerous tonic-clonics! We were playing, me and him. Tag-it. I was running, he was chasing. I heard him stop, just behind the climbing frame. I turned around. He was standing, with the most terrible look on his face...confused, hurt, angry and EXTREME fear. I thought he's dizzy or something, so I called him. He answered me, but with confusion in his voice as well. Just kept telling me he doesn't know what's wrong. And that's he's "just a bit tired". I ran to him, and he walked to me (but very, very unsteady and unfocused). When I got to him, he dropped down. I held him, layed him down and told him he's probably dizzy, and that he should not worry, it'll be over soon, and that everyone sometimes feel like that. But in my heart I knew something very, very terrible was wrong. I could see it on his little face in that split second I turned around. Afterwards, he had a headache, and was tired. But fine again. I went on as normal. My husband came home from work about 10 minutes later. And when I saw him, I burst into tears. Then it hit me. So I called a friend, who suggested I take him to a pediatrician. Which we did. She suggested that he either had an epileptic seizure, or some kind of blood clot restricting his oxygen flow. Both were bad... So then the tests started. ALOT of blood tests (and he cried SO much everytime, it broke my heart). Scans, etc. 5 Days later he had the EEG, and I could see in the man's body language that he's picking up something wrong. When he was done, he said that Nian has epileptiform activity. My heart stopped for a moment. I wanted to cry, but couldn't. My son and daughter was with us. So we kept our heads high. Then the neurologist told the pediatrician that he must immediately have an MRI. The pediatrician thought it was because they suspected a brain tumor. The next two days were the worst of our lives since my daughter was in neonatal intensive care. When we suspected epilepsy, I cried. When they suspected a brain tumor, I couldn't cry. I could just wish it's "only" epilepsy. I knew that if I started crying, I'd break down completely. I don't know how we got through those two days. But we did. And then the MRI was clean!!! We were so happy. We got an emergency appointment with the pediatric neurologist a few weeks later, and he diagnosed Juvenile Myoclonic Epilepsy. It's genetic (even though neither of our families have any epilepsy cases). And uncurable. And he'll never outgrow it. He'll probably get tonic-clonics in a few years (usually 2-4 years after the initial seizures started). For now it'll mostly be absence and myoclonic seizures, and a few atonics. Of course after the diagnosis, we realised how many times he had all 3 those types, and we just missed it everytime, or dismissed it as "he tripped", "he's playing", "he's daydreaming", "he's not listening", etc... One day I remember (when he was about 3 or 4), I told my husband it's not normal for him to fall so much during play and making a joke of it, and my husband said, leave him, he's just playing the clown to his friends and sister. Well, that's our story. He was put on lamictal immediatly, because the epileptiform activity in his brain was so much. It was a rollercoaster ride, the lamictal. But we're on the full dossage now, and next week we see the neurologist again. We're going to have another EEG to see if the activity is controlled by the meds. I believe it is, because he has SO much less seizures since he's on the full dossage. It's never been easy. But with friends, family and this site, and if you're religious, your belief, you'll be alright. It's tough. And it's a long road. And the uncertainty is wearing you down. But, as soon as you have a definite diagnoses, and meds that's working, everything do gets better. Just get past this initial phase. And remember, you're not alone! Good luck, take care, Essie