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Type 1 and Neurocardiogenic Syncope

Discussion in 'Parents of Children with Type 1' started by Tamara Gamble, Jan 19, 2012.

  1. Tamara Gamble

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    Do any of your children have t1d and neurocardiogenic syncope/pass out from low blood pressure and low heart rate? The cardiologist is telling me there may be a link. I'm not talking about due to noncompliance and 40. I mean in kids. That being said we have a a handful of people in our family with this problem due to an autosomal dominant gene I believe. I just wondered if any of you have experience with this. I am using the links below as a reference but they are not very detailed in my opinion.

    http://www.ncbi.nlm.nih.gov/pubmed/10546018

    http://www.ncbi.nlm.nih.gov/pubmed/1389318
     
  2. Lisa P.

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    Nondiabetic kid with blood pressure regulation problems, not specifically identified, told it's close to POTS. Don't know if that qualifies.

    I have seen more and more about this sort of thing lately. Of course, I never knew anyone with diabetes until Selah was diagnosed, now they seem to be everywhere. :p
     
  3. MommaKat

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    We feel that way, too. Amazing how many type 1 diabetics we've met since dd was diagnosed. At the same time, at our last appt the PA was saying they can't keep up with how fast they're growing in patient load. They had 5 new onsets in clinic on that day alone, and more in just that one week. I'd like to find more info on the increase in diagnosis. I found one article, but it was written a couple years ago and predicted exponential growth in the number of type 1 diagnosis in children over the next decade.
     
  4. kiwimum

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    For the past 2 yrs, Tyler has been fainting, and curling up into a ball and jerking. We initially thought it was related to lows, but his bg's at the time were all in range. We finally took him to a cardiologist who diagnosed him with a vasovagal problem - basically low blood pressure.
    He goes light headed all the time, the room spins and occasionally a full faint occurs. He has just been told to drink loads to keep hydrated and when he feels it happening, he is to stop and let his blood pressure catch up with his body.
    He may or may not grow out of it.:(
     
  5. TheFormerLantusFiend

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    I get dizzy and fall back into my chair if I stand up fast, and I passed out and fell on my face and chipped my front teeth about a year and a half ago. My blood pressure has been borderline low (like 95/55) a lot but we haven't caught it being really low.
    P.S. The passing out and falling episode was only a week or two before I was hospitalized with pancreatitis, and while I was in the hospital I mentioned the episode and they put me on a heart monitor which didn't really show anything but bradycardia (slow heart rate). So we don't really know what was going on. I tested my blood sugar and it was about 115 at the time.
     
  6. Tamara Gamble

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    Kiwi mom that's awful. My son is also names Tyler and he is 17 now. This is what I know: His bp and heart rate will drop really quickly. It has nothing to do with his bg being out of range at the time it occurs. He has to have between 4-6grams of sodium and 2 liters of water. G2 and ramen noodles help us meet the prescribed amount. We have met this criteria and his bp has raised 30 points from a month ago and he has felt perfectly fine. This can be familial but she mentioned autonomic dysfunction related to type 1 in kids and it being a predictor of future problems due to lack of control of bg. She said she's not sure at this time. If he didn't have type 1 she would not suspect it. Given we have several people in our family who have this and Tyler's bg is really quite good I'm not sure I'm buying what she is saying. When we go and see the endo in April I'm going to ask. Of course I was out of my mind yesterday when she used it as a "predictor" of micro and macrovascular complications in relation to the autonomic nervous system being compromised and/or "brittleness" with type 1. Her words not mine. I rarely get upset about diabetes anymore to be honest. We do our best and it's just along for the ride. There are those moments still but they are few and far between. Of course, just the mention of the flu elicits and sympathetic response in me but that's about it.

    Vasovagal sycope is now termed Neurocardiogenic syncope. I don't know why they change the names but it's the same thing. I feel like we need to start paying attention to this recently suspected phenomenon and watch how it all plays out.

    Lantusfiend that's just terrible. I would suggest a cardiologist. Sometimes it's a simple fix. Sometimes it's not. My goal is to maintain my sons autonomy by preventing this from happening again and keeping his diabetes in check. He hasn't been able to drive for quite some time. Michigan law is six months post event. One more month and if we have no events and he's compliant he gets to have his license back. He's been a champ about the whole thing but he's about done.
     
  7. Christopher

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    I think the endo is making assumptions/connections that she really shouldn't be making. The fact that she is sharing them with you is worse, in my opinion. And the fact that she is using a term like "brittleness" would really make me question how up to date her thinking/information is about how diabetes is currently being managed.
     
    Last edited: Jan 20, 2012
  8. Lisa P.

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    I would definitely consider it likely not to necessarily be caused by the diabetes. I wouldn't be surprised if there were some common denominator, I've got a bug in my bonnet that my middle daughter with bp issues, we can track it back to about when Selah was diagnosed. I'm really thinking common trigger, and since I'm inclined to buy the idea of a viral trigger for Type 1 I'm wondering if they didn't all run into something and take it different ways. Of course, they would have likely all been exposed to an environmental trigger, also. Who knows. But I would not tag it as a diabetic complication unless you have reason to believe it other than that he has diabetes.

    Gatorade has worked miracles for my kid, hope you have a smooth path from here on out.
     
  9. kiwimum

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    Our endo team are adamant that it is NOT related to his D at all.

    I did forget to say that we are waiting for a neuro exam too, just to rule out epilepsy (due to the jerking)

    At the cardiologist, they did the tilt test, where he lay down, they took his blood pressure then sat him up really quickly and took another reading - his bp dropped by 25 points (I think - it may have been 30)

    Apparently it is common in teenagers, especially boys. As for the driving thing, not sure what we are going to do. While the fainting/collapsing only happens when he gets up from standing or sitting, the flashing lights and dizziness/tilting/spinning of room happens when he is just sitting....:(
     
  10. tbcarrick

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    My son has this,also...Brandon has multiple diagnosis,so he also goes to a cardiologist..The cardiologist said that he must drink in excess of 100 ounces of water daily,and in the summer more...Also, the doc told him to add salt to his diet..that although most people are told to not add salt,these kids have to have it to replace in the body.The doc says that what is happening is because of the major growths,his fluid levels decrease,which causes dehydration/black outs/fainting/etc....and in order for your body to make more,you must drink more...and when doing the tilt test if your beats go down 20 or more points then you are dehydrated...Sorry so long..We did also go to the neurologist,and ran all kinds of tests...But for the last year we have tried this and he has only had 1 episode in the beginning stages.GOOD LUCK!!!!!!
     
  11. Tamara Gamble

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    It was the cardiologist that said this not the endo to clarify. Tyler had a positive tilt table at 18 minutes. His bp and hr dropped drastically and he passed out cold. So far the Gatorade and increased fluids and sodium are working. Thank you for your thoughts.
     
  12. irishmom

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    my son (non t1) had neurocardiogenic instability..he made it not very long on the tilt table..his occurred while serving Mass...they said it was triggered by puberty..he was told to lie flat..so the blood was flowing equally whenever he felt lightheaded...we never had another episode..and it is now7 years later and he is multi sport athlete in hs...
    good luck.
    Marcia
     

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