An Update On Us

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wishing4agirl's picture
Joined: 09/11/03
Posts: 917
An Update On Us

Well I'm VERY glad we switched Cardiologists and Neurologist offices. Eli had an MRI a couple of weeks ago. Wednesday morning I received an email message from the online charting system letting me know that the results were in from his MRI. It showed he had a stroke at one time. I know it says that much and it says some of things that are off, but I'm trying not to speculate on what those mean since I don't understand all that and I don't want to be making a mountain out of a mole hill. It says he has a brain injury due to the stroke. From that and after a visit to the pedi's office they decided they wanted a 5 day VEEG. This just happened yesterday. They said they wanted it ASAP and asked if we could come next week. Honestly if just feels good having at least some answers. We are just taking it one day at a time and trying to process things. We have an appt the following week after the VEEG to talk fully about the results from the MRI (and I'm assuming anything they find in the VEEG).

Anyway, that is where we are at right now.

Joined: 12/01/05
Posts: 1000

Wow. I hope the brain injury turns out to be minimal and not affect him in serious ways. Praying for you for the best possible results.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Well I know it affected the left side of his body (right side of the brain), and the posterior fossa portion of his brain (the back part). I know he has a lot of symptoms of a brain injury for someone who has went without oxygen. There are a LOT of things that now make more sense to us. I'm not sure if this will answer why he is passing out or not. I suspect his cardiologist may in part be correct that it is his vagal nerve (that runs through that area), but I also think it's more of a combination of things. I also know that it did affect his tongue and the way he moves his body, but the body stuff is very minor now since he's been in PT/OT. I know there will be things he will always struggle with and also know he could be way worse off. I don't know that he will ever be in a typical classroom because I don't think he's going to be able to keep up. His teacher this year is putting him in DD kindy next year and they will be changing his IEP from educational (I think that's what it's called) to medical. Oh and about 10-15% of stroke victims develope seizures so we will see of the VEEG shows next week. I'm really nervous.

Joined: 11/28/06
Posts: 848

That's awesome that your district still has DD Kindergarten! Our district did away with it a few years ago and I feel it is a real disservice to the kids. Eli should really thrive in that environment and you just never know what the future may hold for him.

And yay for answers too! Even when the news isn't the best I know some sort of answer has to feel good to finally have. Please keep us updated when you're in the hospital. Definitely thinking about you guys and praying for you!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"Alana*sMommy" wrote:

And yay for answers too! Even when the news isn't the best I know some sort of answer has to feel good to finally have.

EXACTLY! I cannot even begin to tell you how good it feels to be able to connect the dots. I do wish it had explained everything like why he's passing out, etc. but I tell definitely take it.

As for school, there are only like 10-12 kids in his class now and he doesn't do well. Double that amount and it will take nearly the entire year to catch on the information from the beginning of the year. The one mom, whose son will still be in Eli's class next year said there will only be like 6-7 kids in the class. Praise God!

Joined: 12/01/05
Posts: 1000

If his EEG indicates seizures, maybe that would explain the passing out. I agree with the relief finding answers, even if they're not great. With Isaiah, unfortunately, every single test we've done on him has been negative. We still have no clue exactly what is going on with him.

The school plan sounds great. I'm glad you have a proactive school.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"2sonsplus1" wrote:

If his EEG indicates seizures, maybe that would explain the passing out. I agree with the relief finding answers, even if they're not great. With Isaiah, unfortunately, every single test we've done on him has been negative. We still have no clue exactly what is going on with him.

The school plan sounds great. I'm glad you have a proactive school.

That actually has been Eli up until this point too. The teachers at his school, his SLP, my friends and pretty much EVERYONE has never understood how that could be. That's why this test showing us what we feared all along has been a blessing in disguise. I think that is the neuro's thought is it's really seizures. I don't know enough about seizures to guess one way or another. I just know when he's running around he blacks out enough that he falls and is awake before he his the ground. And he's ALWAYS been running around when he passes out. It's never a just sitting there type of thing. We realized this was happening because he did it in front of my DH and oldest. You know when you stand up too quick and you get dizzy? Well that was the first one that happened only he didn't just stand up, but that is sort of what he looked like. I wasn't home, but my oldest was concerned enough he was checking him and asking him if he was okay. The the others I happened to see his face and he blacked out in front of me, one of which he fell from a platform on the playground that was about 4 feet off the ground. Then he did it with his Sunday school teachers and he was really pale. He looks very disoriented like he has no idea what just happened. Other times, because you aren't actually looking at him, he looks as if he got clutzy and fell. Can seizure be that short? He does have some episodes I do actually believe could be some sort of seizure but they don't look anything like the passing out ones so we will see.

Joined: 12/01/05
Posts: 1000

It could be that he's having seizures while he's sitting too, but you don't notice them because he doesn't fall down. A seizure could be anything from staring into space for a few seconds to grand mal (shaking all over, like you see in the movies). There are so many different types of seizures that I wouldn't rule it out until he's had a clear EEG. There are even kids who have seizures and continue doing whatever they were doing while having it. The only way you can tell if they are actually seizing is to ask them a question, like "what is your name?" If you ask the a yes/no question, they can still answer, but an open ended question like their name, they can't.

Joined: 11/28/06
Posts: 848

From my experience, the number of students in ESE units varies from year to year. It can be hard to predict who will be eligible for a particular program or who may move into the area. But if you're concerned that Eli still isn't reaching his full potential you can always push for a Para Specific, especially with the medical concerns you have. I also had a student that had a full time RN with her (due to a heart condition) and the nurse was able to assist her with things as necessary. Unfortunately teachers don't get very far when pushing for these things, but parents can get the world if they are knowledgeable about the system. Just something to keep in mind.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"2sonsplus1" wrote:

It could be that he's having seizures while he's sitting too, but you don't notice them because he doesn't fall down. A seizure could be anything from staring into space for a few seconds to grand mal (shaking all over, like you see in the movies). There are so many different types of seizures that I wouldn't rule it out until he's had a clear EEG. There are even kids who have seizures and continue doing whatever they were doing while having it. The only way you can tell if they are actually seizing is to ask them a question, like "what is your name?" If you ask the a yes/no question, they can still answer, but an open ended question like their name, they can't.

So do you know if the seizure can be the same type of seizure but look different? Or maybe he's have a couple different types? More questions I guess (if that is really what he's having). But I seriously can see the light at the end of the tunnel and it feels awesome.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Soryy you and Eli are going through this, but I must say that after all the issues that you were having earlier, trying to figure out what was going on, that I am very relieved that the change in doctors have developed a much better situation for Eli. I hope it continues and that these results lead to some better understanding and help for him.

Sweet Pea Twins's picture
Joined: 09/08/09
Posts: 922

"wishing4agirl" wrote:

So do you know if the seizure can be the same type of seizure but look different? Or maybe he's have a couple different types? More questions I guess (if that is really what he's having). But I seriously can see the light at the end of the tunnel and it feels awesome.

He could be having more than one kind of seizure. The fact that he seems disoriented after a blackout makes it sound very much like he's having a seizure. My Deborah has the same issue after having a seizure - she's sometimes a bit confused about what just happened... and yes, seizures can be very short and noticeable only to those who know exactly what to look for. This is why my DDs school spent quite a bit of time gathering info from me and training her teachers, etc. when she was enrolled.

I hope that you get more answers soon!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Well at the moment we are sitting here doing the VEEG (it's been not quite 12 hours). I don't fully understand how this is supposed to show a seizure (if that is even what these are) when when we notice them he's RUNNING. He can't even get out of bed. He can but it's a COMPLETE pain. You have to tell them so they can turn the camera. This is rediculous.

Joined: 12/01/05
Posts: 1000

If he is having seizures, it would be happening at more or less random times, not just when he is running (even though you only notice them when he's running, if that's what they are). If he is having them, the EEG will show the changes in brain waves, then you will know for sure. Hang in there. It doesn't sound easy.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I don't think these are seizures. Which scares me way more. I was hoping that was what they were. I wouldn't be so scared to let him play.

Joined: 12/01/05
Posts: 1000

Yeah. I can understand that. His cardio has no idea what it is? I would think it would have to be either cardiological or neurological. I don't even know if this would do any good, but have they tried doing a holter monitor on him and letting him run around to see what happens to his heart during these episodes?

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

They did an event monitor for more than 3 months. It didn't do any good. But those don't measure pressure. They ONLY detect arrythmia issues and we don't think that's Eli's problem. We think it's a combo of a couple of things including pressure because of the valve and they've said that won't show up on that. The neuro thinks it's his heart too. She just wants to make sure she's not missing something. I just need some answers. I'm the type of person I'm much calmer when there are answers even if they aren't good.

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