Urgent help needed for a sweet boy!!

Gretchen(Celia's mom) · #1 11-01-2008, 01:21 PM

On another board I sometimes go to there is a mom that has a son that is having "episodes" that no one can figure out. I am pasteing the link to his story, background and a video of these episodes. It is very hard to watch BUT Ashton and his mom need help, if anyone out there has any ideas or has seen this type of episode before please let Ashton's mommy know or reply here and I will send her your replies!! Here is her post on the other board, the link to the detail are in her post.

I have been a big fan of a blog called "the preemie experiment". Anyhow throughout the past Stacy (the author) has tried to help me figure out what could be going on with Ashton.

Well because we have moved and have new addy/phone number she offered to post the video on her blog. I had asked her to in the past but I could not figure out how to get the sound off so it was not done.

Anyways I am kind of excited because she gets a ton of traffic to her blog with many of the avid readers/commenters being nurses and doctors.

Maybe, just maybe I will get some new ideas as to what could be happening??

If you are interested in reading her blog (it is great!!!) it is www.thepreemieexperiment.blogspot.com THIS IS WHERE THE VIDEO IS

JWorthington · #2 11-01-2008, 05:03 PM

That is VERY scary, I haven't a clue what is going on with that little one. I am a little concerned that she was making a video of it while calling 911, that's bizarre. Does she have no support?

Julie x

babysupermansmommy · #3 11-01-2008, 06:17 PM

my friends son use to have episodes similar to this, he also had cp BUT he also had something wrong with his spine that was actually pushing on his trachea and making it difficult and sometimes impossible to breath. At the age of 4 they finally put a trach in because he started having many many episodes that lasted 3 or more minutes.

I hope she gets answers and support, i could not imagine having to go threw that more than once

Mom2TwinsPlus1 · #4 11-01-2008, 07:01 PM

Is it possible that since he has CP they could just be unexplained apneic spells? That is what is wrong with Emma. Although she never did them quite like that in the video. We had to start CPR right away or she would have never come to on her own. All our brain scans show that the part of the brain that controls Emma's breathing is fine.

I too was a little concerned that she just kept filming and calling 911. I think that she should have started trying to rescue breath for him. But I guess in an emergency situation we all handle things diffrently and its easy to judge someone when is not you in the situation.

Poor kid, the concern in mom's cries and his poor little face, made it very hard for me to watch the video

Esties mom · #5 11-01-2008, 07:13 PM

it sure looked like a seizure to me, i know some kids have brain storms, not sure if they read like seizures or not

Mom2TwinsPlus1 · #6 11-01-2008, 07:22 PM

I thought seizures at first too but her blog says EEG shows nothing. Pretty scary. I had breath holding spells as a child caused by an inmature epiglottis, I had my mom watch the video an she said I didn't act quite like that though. But you never know some kids act diffrently than others. I am not sure how to test for an epiglottis issue. Have they scoped him?

Gretchen(Celia's mom) · #7 11-01-2008, 08:18 PM

Shannon(Ashton's mom) asked me to post this after she read yall's replies.

I have a lot of support. However after over two years of these spells happening I was tired of explaining them to doctors. I was tired of no one doing anything. I was tired of people thinking I was exaggesrating them. Words definitely don't do these spells justice. The first thing I thought of when he went into the one that day was to grab my camera and tape it. This way I could SHOW the doctors instead of telling them.

Thanks!

Livi's_mama · #8 11-02-2008, 12:11 AM

I'm sorry but if his CO2 is 70, that IS NOT GOOD! How in the world did he get to go home with them knowing that?

twintotwin · #9 11-02-2008, 06:19 AM

I couldn't find the video, perhaps it was removed.

This poor mom sounds so frustrated! Milo's had some weird episodes of duskiness but nothing like what's been described.

One thing many people don't know about the pulse ox monitor is that they record a history. I know there's a way to print out the history but I don't know it.

cbissell · #10 11-02-2008, 08:34 AM

Interesting that mom said, "We spent 88 days at Toronto Sick Kids this year to try and figure out what was going on". Since they still have no diagnosis, I'd *guess* that based on the child's history of PVL/CP that this is some sort of seizure activity. Even though EEG did not show seizures at the time of the test, they were abnormal.