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Mom Crisis...I need outside opinions. :/ (karma: 1)
By Theresamember has saluted, click to view salute photosPremium member Comments: 34891, member since Wed May 22, 2002
On Sat Oct 31, 2015 11:56 PM
Edited by Theresa (28613) on 2015-10-31 23:58:05

So I'm having a mom crisis, y'all. Moms that have kids with long term illnesses (your diabetics, celiacs, what have you...), will probably have the most experience here, but I'll take whatever you got.

James has taken to having these "Vasavagel" episodes (fun fact, if you're in to that kind of thing? A vasavagel episode is actually what triggered the series of events that killed Elvis. Thank my nurse sister for that one...). Some are more severe than others, some cause him to pass out, others are relatively minor, just a sudden onset burst of sprint-to-the-bathroom inducing nausea, and then he's good to go.

Most, he's fine afterward. One he blacked out during, and when he came to, had no memory of where he was or how he got there, so he earned himself a trip to the ER for that one. He passed out during one, came to, and asked to go to lunch. Frequency is all over the map. He had one in May, the one that sent him to the ER was the last weekend in September, and he's had THREE since, including 2 in the last 48 hours.

We've got requests in for a couple of higher up follow ups to try to nail down what this is, and how we freakin' make it STOP, but in the meantime...how do I feel confident sending him out in to the world like this? He could pass out, black out, or throw up, pretty well at any given moment. How do I feel safe with that? How do I ask his already overworked teacher to watch out for him?

...what do I do now?

12 Replies to Mom Crisis...I need outside opinions. :/

re: Mom Crisis...I need outside opinions. :/
By Theresamember has saluted, click to view salute photosPremium member Comments: 34891, member since Wed May 22, 2002
On Sun Nov 01, 2015 12:00 AM
After the one that sent him to the ER, they insisted it was dehydration. So we've been actively pushing water. And I swear to you, the more hydrated he is, the more often these episodes happen...
re: Mom Crisis...I need outside opinions. :/ (karma: 1)
By Sumayah Comments: 6876, member since Wed Nov 12, 2008
On Sun Nov 01, 2015 01:32 AM
Not a mom so I can't offer help from that perspective. I do have vasovagal syncopate though. Mine is trauma induced, I think of it like a blue screen of death, where you get a critical error and have reboot the computer. I get injured or sick and bam, I'm on the ground. Because I know it happens if I'm injured I let important people who see me on the regular know, so of it happens they don't freak out. Mind you they still do, but at least they've been warned.

Finding his triggers would be immensely helpful. If he gets low or high blood sugar, if he's stressed out, if he feels helpless, if he's over-tired - whatever it is that sets the vasovagal reaction off. It might not even be something he can communicate to you, but if you can figure put the x and y, you might be able to get to z and locate what sets him off.
re: Mom Crisis...I need outside opinions. :/ (karma: 1)
By hummingbird Comments: 10418, member since Mon Apr 18, 2005
On Sun Nov 01, 2015 09:47 AM
I've had them in the past, mine were caused by stress and lack of sleep as a mom of four young kids two of whom had special needs.

You need to find out what the trigger is, dehydration is one of the many so the hospital probably find this is one of the major causes they've found. It would also help if James could tell you if he feels anything before one occurs. My signs were lightheadedness, black spots in my vision and feeling weak and floppy. It meant I had to find somewhere to lay my head down or I'd fall down even if it was just bending forwards then I'd take a few deep breaths.

If James learns to recognizes his symptoms it means he'll also be able to take actions to help prevent the attacks happening. The important thing is to be able to restore the flow of blood to the brain and that means getting the heart and the head on the same plain.
re: Mom Crisis...I need outside opinions. :/ (karma: 1)
By DefyingGravityPremium member Comments: 5265, member since Sun Jan 19, 2003
On Sun Nov 01, 2015 02:29 PM
Out of curiosity - what tests have they done to diagnose his episodes as vasovagal? If you're certain they're vasovagal in origin, then one thing that works well is tensing up -- when he knows his triggers and/or feels one coming up, tense ALL muscles. I used to tell me pediatric patients to pretend they were statues and tighten everything up to the point where their arms and legs shake. The last thing he should do at that point is "relax" or "try to breath through it," which you'll often hear some people say. Another thing to do if he can sense one coming is to train him to get on the floor FAST, as in lay down and put his legs in the air immediately. This can often help get rid of that vertigo-ey nausea feeling before it gets overwhelming as it not only gets his brain at the same level of his heart but also gives him a "fluid bolus" from the blood in his legs.
re: Mom Crisis...I need outside opinions. :/
By Theresamember has saluted, click to view salute photosPremium member Comments: 34891, member since Wed May 22, 2002
On Sun Nov 01, 2015 10:58 PM
The vasovagel thing was decided by the doctors. When he went to the ER, the paramedics that were called (we weren't home when it happened), checked his sugar and they were satisfied with that. Then when we got to the ER, they did a CBC, and an EKG and fed him, and everything went great. Their explanation to him was that if there was no blood reason it happened, no heart reason it happened, and he could hold down food (presumably to be sure that this wasn't just garden variety stomach flu, therefore there being no viral reason), that he was free to go. That's when the vasovagel episode was first mentioned.

My contention is, and has remained, that his blood sugar is a bigger problem there than they're giving it credit for being. I took him in to the pediatrician for this one, and made them check his sugar. He ate at the party, we drove straight to the doctors office, and his sugar was 102. Maybe his sugar is completely normal, maybe the high/low swing is just especially aggressive. I don't know.

I've scoured the list of triggers, and none of them seem to make a ton of sense?

Although, and I almost forgot this part, I did check the list of low blood pressure, and that does make a ton of sense. And I just checked his notes, and Friday when I took him in, his recorded blood pressure was 88/46, which from everything I've read, is pretty shockingly low.

We've got a pending appointment with Neuro from the episode we ended up in the ER from - and to be clear, I don't believe that this is a Neuro problem. But I also know that if it WERE a neuro problem, and we didn't find out about it because I decided I knew better, I'd hate myself forever. So Neuro it is.

The doctor Friday also sent in an appointment request with a cardiologist, which is probably a lot more in line with the problem. She said that they're pretty loathe to medically treat low blood pressure in kids (because of side effects from medication), and everything I've read kind of backs that up, that unless it gets to the point where it's life disrupting, they kind of just want you to clean up your diet a little and hope for the best. :/ My blood pressure is crazy low too (I get asked a lot, "Are you SURE you feel OK?" at the doctors office...), but never to the point that I've felt like I know he does. What a pain.
re: Mom Crisis...I need outside opinions. :/ (karma: 1)
By DefyingGravityPremium member Comments: 5265, member since Sun Jan 19, 2003
On Tue Nov 03, 2015 08:55 PM
^ How old is James now? In my head, he's still 4, but I know I'm off by a number of years.

School age kids have much lower BPs than adults - most adults would be passed out cold with a BP of 88/46, or at least feeling pretty lightheaded or woozy, but that's not very low for a school aged kid - Their average is in the 90s/50s.

Definitely do the cardio and neuro tests -- you're right, it's probably neither, but if it IS and didn't get diagnosed, you'd be a big ball of "what ifs" for years to come. I second their recommendation of eating regularly and staying hydrated.
re: Mom Crisis...I need outside opinions. :/ (karma: 1)
By kandykanePremium member Comments: 16415, member since Mon May 01, 2006
On Tue Nov 03, 2015 10:30 PM
Edited by kandykane (157761) on 2015-11-03 22:32:20 oopsie
I know very little about his condition, but my nephew has epilepsy and I have watched his mom struggle with the 'sending him out into the world' part, especially when it came time for moving away to college. And he did have a few very scary episodes away from home. :(

His parents learned as much as they could about his condition and helped him learn also. They made sure he kept emergency medication and a cell phone on his person at all times, they informed all the adults in his life about his condition and what to do in an emergency, and his closest friends too, as they got older. And they had to swallow hard to not hold him back too much. Their faith was a source of comfort to them, just throwing that out there.

I'm sorry, I know it's hard. :( I hope he gets good care and you get some answers on the specifics of his condition.

kk~
re: Mom Crisis...I need outside opinions. :/
By ChristinePremium member Comments: 6817, member since Wed Feb 04, 2009
On Wed Nov 04, 2015 08:37 AM
Not much to contribute on this particular condition, but to answer your original concern regarding going out into the world, I vote YES! Make sure he is on the top of his game... well hydrated, well rested, well fed, and in a positive frame of mind (i. e. "This is going to be a GREAT day!"), then...carpe diem!

My daughter has been medically fragile all her life. Learning how to protect herself without missing out on day to day childhood was one of her biggest challenges. Still is, in a way.... but she is about to graduate from college, is working an internship, and preparing for graduate school. The challenges of living with a chronic medical condition are many but there are "side effects" that are greater life lessons than healthy people could ever master with such depth and grace at such an early age. What these kids lost in health they gained in character.

Hugs to all.... this is just as hard on moms, dads, and marriages, as it is on the afflicted children.

xoxo

Keep On Dancing*
re: Mom Crisis...I need outside opinions. :/
By Theresamember has saluted, click to view salute photosPremium member Comments: 34891, member since Wed May 22, 2002
On Sat Nov 07, 2015 11:29 AM
Edited by Theresa (28613) on 2015-11-07 11:31:44
Oh, I thought for sure I'd already responded to this. At any rate, he's nine now, can you believe it?!

We've been having a laugh about it this week. I've got the school primed and prepared - these are the symptoms, this is what you need to do, here's a extra small snack for him, ready, go...and the only episode all week was after school, on the day they had off anyway. I think I jinxed it. He said teachers are stopping him in the halls, "How you doin' James? You OK?", and nothing. LOL...

For their part, they are being very gracious about the entire thing, but they have said that if he legitimately passes out or blacks out, they're sending him home regardless, even if he feels better after the fact.

Appointment for cardiology is set up, for the 17th. The neuro department has a two month waiting list, cardiology got him in in two weeks.

I did get far enough out in front of him on Tuesday, that I was able to get a better eye for the warning signs. Lack of concentration was a big one. I asked if he was hungry, he couldn't concentrate long enough to give me an answer. That was interesting!

We've discussed the feelings, and how he feels, and what he needs to do, repeatedly. He's even warned his friends he told me. When the ER doctor said he needed to sit down and put his feet up, he laughed, like "What, I'm in line for the slide on the playground, and I just sit down and put my feet up?" I was like "Ok, which is more awkward...doing that, or throwing up all over the kid in front of you?!" He was like "...that's a good point." Haha...
re: Mom Crisis...I need outside opinions. :/
By schuhplattlerPremium member Comments: 3037, member since Sat Dec 23, 2006
On Sun Nov 08, 2015 04:11 PM
Whatever else you do, make sure you take him to a good chiropractor. Just about any nerve diseasw can be caused partly or wholly by a pinched nerve.
re: Mom Crisis...I need outside opinions. :/
By hummingbird Comments: 10418, member since Mon Apr 18, 2005
On Sun Nov 08, 2015 06:15 PM
schuhplattler wrote:

Whatever else you do, make sure you take him to a good chiropractor. Just about any nerve diseasw can be caused partly or wholly by a pinched nerve.


See the thing about chiropractors is most tend to give no muscular work to help with their manipulations and seeing as it's the muscles that hold the boney structure in place they need to give exercises to their clients or their treatment is not effective. You're just going to have your chiropractor as your new, best, very expensive friend. Their treatment only works if they treat the cause, not just the symptoms. Just like any practitioner.
re: Mom Crisis...I need outside opinions. :/
By schuhplattlerPremium member Comments: 3037, member since Sat Dec 23, 2006
On Sun Nov 08, 2015 07:56 PM
^
most tend to give no muscular work to help with their manipulations

Then I have been very lucky, for I have not found this to be the case.

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