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

Hi I am brand new first week of E with my 2 1/2 yo son. He is scheduled to have a Lumbar Puncture when he gets his MRI and additional blood tests in 2 months. All research I am doing does not link this test to epilepsy. I understand that it is looking for virus or disease, but all the virus and diseases it will detect do not read as being linked to E. Does anyone know why they are doing this test?

Comments

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

sorry i know nothing about lumbar punctures or why or what they detect but we live a kind of sheltered life lol.Anyway I just wanted to say hi and welcome .My son Carson also has E . We have been dealing with it for about 2-1/2 years now . He will turn 4 next week and had his first seizure when he was 18 months.

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

has Carson done well with his development? have his seizures changed over the years? Thank you for the welcome, it is late at night and I am desperately trying to get my computer on the chat room but it will not work. After just spending 32 hours in emergency I am finally home and it has hit me. I am starting to feel pretty upset for the first time. up till now i have been on auto pilot taking care of business.

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

Hi Mamma Bear!

Welcome! I'm also a mother of a son(5) with E. He were diagnosed in August of this year, when he had an atonic seizure. What seizure did your child have? We've come to recognised atonic (drop attacks), absent and myoclonic seizures in our son. Previously it went unnoticed by us (which obviously add the guilt factor!). My mom used to say hindsight is not always a good thing.

After numerous tests they said it's Juvenile Myoclonic Epilepsy. Though it did not include a Lumber Puncture. The MRI is extremely necessary, but I'm not sure why they need the LP for your son. I tend to trust medical experts, they may want to exclude some virus in the brain, I believe? Like encefilitis or meningitis mayby. (Excuse the spelling, I'm from South Africa and English is my second language). But if you're unsure if it's necessary, why not phone your doctor and ask him? It's not something I think you should put your son through unnessecary. Something big went wrong with my epidural, and it was EXTREMELY painful. So much so that I nearly decided to have a general aneathestetic with my second child (I had to have ceaserians with both), rather than go through that pain again. In the end, I had a wonderful experience 2nd time round. But I'll never, ever forget that pain flowing through my back. And they needed to administer it twice, with a patch (injecting blood back into the spine) 2 days later. So I had that pain 3 times. It is worse than anything I ever had. Maybe you can request they give your son something beforehand?

Good luck to you. It's not an easy road, those first few weeks. Especially waiting for test results. I hope you have some answers at the end of it all. Just hold on, after a while, acceptance do start to come, and you start to deal with it all. It's tough when they're so small, they don't even understand why. Somedays it will break your heart, but in the end you'll realise that he's still your little boy, something was just added on his road, and he needs you to be there for him. My son's teacher told me yesterday, that she believe he got all his talents and intelligence as an extra gift from God, to help him cope and deal with E and the effects the medications have on him, and the impact it will have on his life and school performance in the future (his type of E is uncurable and he won't outgrow it). I'm starting to realise how much more precious my son had become to us after he were diagnosed.

Take care, I hope everything will settle down and that you will find answers and help soon.
Essie (mom to Nian, 5 and Meonie, 3)

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

My 7 mo old just had one the other day in the ER. She hasn't been diagnosed yet, but has had 6 seizures in 1.5 months. They did the spinal tap, to look for infection and also b/c they saw some extra fluid on her brain from her CT scan. They said the lumbar puncture would better tell them about the fluid. I've read it's not terribly painful, but I refused to be in the room. There are certain things I can watch and that is one I choose not to!

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

Thank you for your welcome message.

My son had a cluster of tonic-clonic (grand mal) seizures over a 4 hour period. He drops and twitches. His posictle state lasts for a few hours sometimes. His mental development is considered normal and I just found out that the test is to check for certain amino acids, and check certain cell levels. He will be put under as it would be impossible to keep him still for the MRI and Spinal Tap so I have been told he will not feel any pain. I have posted a blog if you are interested in details of his first seizures.

The well wishes really mean alot to me. I am literally runing on a week without any real sleep. Today was the day where I first felt VERY angry. And eventually had my first real cry.(without my little guy knowing of course) I find it so hard that when we play together right now if he throws his head a certain way or does anything I catch my breath. I know he can sense my discomfort and is getting annoyed with me. Is there a blog I can read about your son and what you have gone through?

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

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

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

Thanks for the great message! I am very encouraged to hear that Lamictal is working for your son, especially since my son, Fletcher has just started the same drug! There is another mother who I referred to some of your comments on here that was not feeling good about Lamictal. Hopefully your input will put her at ease.

I find it interesting that you would consider tonic-clonic seizures very major and dramatic, and myopic not as much. When I first started reading about some of the parents on this site with kids dropping violently face down that sounded pretty scary to me! I am in Calgary Alberta Canada, and finding the health care to be very effective. I was just wondering where you are from, as people I have chatted to in the last day from the US have not heard of Lamictal.

Re: Re: Re: Re: Re: Anyone been through kid having lumbar punctu

Hello there Mama Bear!

It's so nice to chat with you. I really hope that Fletcher will be able to tolerate the lamictal. It does have alot of advantages. It's gonna be more difficult for you because he's so young. At least my son could say that his head hurts or I could calm him down when he went into one of the emotional cries, by explaining it's the medication. Just keep an eye out for that rash, and don't panic (I did!). We were camping out of the city when it appeared! They say you have a couple of days time from it appears, until it either needs treatment, or it dissappears. My son's started on the Saturday, and by the Tuesday it was totally gone. I just continued to give his meds (on doctor's orders!)

You know, I really don't know why the atonics is not as scary to me, as the tonic-clonic. Maybe because I've experienced the atonic, and not the tonic-clonic. It's always the unknown that scares me. So far my son was also very fortunate not to have hurt himself (he was always on grass or a floor). Never hits his head. It seems to just buckle his legs underneath him for a second. I too get low blood pressure and faint. So it's not something that scares me. But to see your child twitch and not breath, that's what I'm scared of. Especially since it can go into status. Maybe after his first tonic-clonic I'll feel different.

Oh yes, and you ask where I am. From South Africa. In the city of Centurion (it's a few kilo's north of Johannesburg). Our health system is also quite good, especially in private care. My son is with an extremely good pediatric neurologist. Oh, and remember, medications have different names in different countries. Lamictal is also known as Lamictin.

Take care,
Essie

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

my son had three lumbar punctures (spinal tap) in one night. it was following a febrile seizure he had with a high temperature with no other cold/flu symptoms. it was done in the emergency room. the first doc did one but got blood tinged sample which meant it was useless and could not be used as a sample. then he asked me to help hold my son down for a second attempt. this sample was also blood tinged. at this point the y called in a pediatric neurologist to come from Boston to do the procedure. when he did it and got another tainted sample he recommended admitting him to hospital and quarantinne him for observation. as the ped. neuro explained it to me, my son has a rare structural anomaly. he has a blood vessel which runs very close to his Cerebro Spinal Fluid (CSF) canal. which makes it almost impossible to get a clean test.

as it turns out the doctor was concerned about bacterial meningitis with my son because of his high fever and no other symptoms. it was ruled out. it was simply a virus.

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

Thanks for the responses. I have found out that they are checking for amino acid levels. Apparently these can effect brain synapsis if not balanced.

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