vasovagal syncope/low blood pressure (my dd)

[Denisemomof4]

Ok, today I feel that we either FINALLY got answers for dd, or we are getting closer. I can confidently say that 9 doctors and 6.5 years later, I feel that maybe the answers given today are truly what's been going on. Please help me with this because I know there have been posts on these conditions before. And bare with me please, I'm beyond exhausted.

 

Dd was diagnosed with vasovagal syncope and low blood pressure. When we got to the hospital today, I was rushed because I had to use the restroom. While waiting for the door to unlock, I noticed that dd's face was blue! I ran to the reception desk and asked them to get a nurse right away. Someone went out back to get one but the check-in process for dd started. The woman who went out back reappeared and said they'd take us out back when we finished check in. I told them I'd like dd looked at right away because her face wouldn't stay blue. I asked again for a nurse, but then watched the bluish tint slowly leave her face. I happened so fast that I assume her face was blue when we were trying to find our way to the unit we needed, and by the time I saw it, the end of this "episode" was near. She felt perfectly fine. When we went out back and I used the restroom, dd could tell where her face had been blue. By the time we saw a nurse, her color had returned to normal. :banghead:

 

They explained the vasovagal and the low blood pressure reading. They explained, and I came home and read online, that the blood flows to her lower extremeties and organs during this time, and the brain doesn't get enough oxygen. This is what caused the near fainting spells. Many people flat out faint. But with this information, in theory, it would make sense that if her brain wasn't getting enough oxygen that her face could turn blue, wouldn't it?

 

The thing that puzzles me is that the dizziness, nausea, loss of sight, and near fainting have all but disappeared. This is GOOD!!! The blue lips, DARK blue, have disappeared. BUT, the bluing AROUND the mouth, the nose, the eyes - still there. And without symptoms. They said it's a good sign that she's getting better and not worse. I agree.

 

Can low blood pressure cause cyanosis, or bluing of the face? It's telling that she got this low blood pressure read right after I saw her face blue. Maybe nobody mentioned low blood pressure before because it wasn't real low? Her first reading was 90/56, her second 100/60.

 

The drs also said that a tell tale sign of low blood pressure is to have a very slender build like her. I don't know if that's true, but my aunt has low bp and has always been extremely thin while not limiting food.

 

They did an EKG and an echocardiogram and they said her heart is perfectly normal.

 

So, moms with experience with these two symptoms, opinions? Maybe dd presenting blue isn't common, but explained???

 

They said she needs to keep well hydrated. I'm after her about this ALL THE TIME. She was also told she needs 2 quarts of Gatorade (I bought the kind with half the sugar) but is there a healthier option? She also needs to increase her salt intake.

 

I do hope I've made sense!

[Perry]

I know you saw pediatric neurologists in the past. Did they ever do an EEG? Usually with vasovagal syncope kids get very pale, but not ususally blue. Blue in the face is more frequently associated with seizures. But if she had a normal EEG I'd be inclined to think it's vasovagal syncope and she'll probably outgrow it. With a normal EKG and echo you can feel confident her heart is fine.

 

If it were my dd I'd want an EEG if she hasn't yet had one. If that were normal, I'd be able to relax.

[abbeyej]

I'm by no means an expert, but ds (also a skinny kid) has passed out several times and was given the same diagnosis as your dd. He hasn't turned blue that I've noticed though. Deathly white and clammy, but not blue...

 

I don't give Gatorade. I do try to keep ds hydrated. In the morning, he drinks a cup of miso (refrigerated section of any health food store and many grocery stores that have Asian foods -- just mix a little in hot water) with a pinch of dulse flakes (sea vegetable). These two things provide a good dose of sodium and minerals. (The fact that our ped's mom was Japanese may have had something to do with his cheerful approval of this alternative, lol.)

 

Ds hasn't had any episodes of passing out in a couple of years now, though in part that may be because he recognizes the signs and squats down and puts his head between his legs. ;) That helps.

 

Back when he was in danger of passing out more often, I did occasionally buy electrolyte water for him for things like taking to soccer camp or other times when he would be especially in danger of getting overheated and dehydrated.

 

His doctor did reassure me that it was a good sign that he only ever passed out when standing around -- he never had any trouble in the midst of strenuous activity. (He also had, for unrelated reasons, a normal EKG and EEG a few years ago.)

Edited June 29, 2010 by abbeyej

[Miss Peregrine]

DD14 just had a vasovagal episode when she had strep recently. Is this something that can be ongoing?

[Denisemomof4]

I know you saw pediatric neurologists in the past. Did they ever do an EEG? Usually with vasovagal syncope kids get very pale, but not ususally blue. Blue in the face is more frequently associated with seizures. But if she had a normal EEG I'd be inclined to think it's vasovagal syncope and she'll probably outgrow it. With a normal EKG and echo you can feel confident her heart is fine.

 

If it were my dd I'd want an EEG if she hasn't yet had one. If that were normal, I'd be able to relax.

 

she's had two EEG's at two different hospitals. One was at Boston Children's. Both were normal, but at BC they said that she could have a normal EEG and still have seizures. Both times it was the EEG where we had to stay up all night and have the test done in the morning. It's quite possible she had seizures but is outgrowing them. We did get one episode on tape and the neuro at Dartmouth found nothing concerning.

 

I still question seizures, but with each passing year, things get better and not worse. For the past year or two, her ONLY presenting symptom is the bluing face. No longer blue lips. She feels fine when this happens but it's hard for me not to be concerned, at the very least.

[Denisemomof4]

I'm by no means an expert, but ds (also a skinny kid) has passed out several times and was given the same diagnosis as your dd. He hasn't turned blue that I've noticed though. Deathly white and clammy, but not blue...

 

I don't give Gatorade. I do try to keep ds hydrated. In the morning, he drinks a cup of miso (refrigerated section of any health food store and many grocery stores that have Asian foods -- just mix a little in hot water) with a pinch of dulse flakes (sea vegetable). These two things provide a good dose of sodium and minerals. (The fact that our ped's mom was Japanese may have had something to do with his cheerful approval of this alternative, lol.)

 

Ds hasn't had any episodes of passing out in a couple of years now, though in part that may be because he recognizes the signs and squats down and puts his head between his legs. ;) That helps.

 

Back when he was in danger of passing out more often, I did occasionally buy electrolyte water for him for things like taking to soccer camp or other times when he would be especially in danger of getting overheated and dehydrated.

 

His doctor did reassure me that it was a good sign that he only ever passed out when standing around -- he never had any trouble in the midst of strenuous activity. (He also had, for unrelated reasons, a normal EKG and EEG a few years ago.)

 

LOVE the miso/dulse idea! THANKS!!!

 

Dd never has issues during exercise. She does synchro swim, and it's quite a workout. She also has to hold her breath for longer periods of time! NO issues there.

[Denisemomof4]

DD14 just had a vasovagal episode when she had strep recently. Is this something that can be ongoing?

 

if it was her first, I wouldn't be concerned. Dd started this at age 4.5. If it continues, I'd have her checked out to be safe. It's not uncommon and isn't dangerous.

 

I still wish I could meet/talk to ONE PERSON who has this and/or low bp AND bluing of the face! Siiiigh.

 

It does make sense to me, though.......

[Miss Peregrine]

if it was her first, I wouldn't be concerned. Dd started this at age 4.5. If it continues, I'd have her checked out to be safe. It's not uncommon and isn't dangerous.

 

I still wish I could meet/talk to ONE PERSON who has this and/or low bp AND bluing of the face! Siiiigh.

 

It does make sense to me, though.......

 

Oh, I hope you can find some answers. :grouphug:

[tampamommy]

Hypoglycemia can also induce vasovagal syncope. In addition to hydrating her well, I'd make sure she is eating smaller meals every 2-3 hours. Some good snacks would be apple or celery with peanut butter, cheese and whole-grain crackers, raw veggies and yogurt dip, yogurt with oats & fruit or granola, hard-boiled eggs and whole-grain toast. The meals don't have to be big. Especially if she is thin, she just needs to have a steady flow of non-sugary nutrients coming. (bananas and grapes are very sugary)

 

The link below describes the bluish symptom your dd is experiencing. The article is on NCS (neurocardiogenic syncope) which is also referred to as vasovagal syncope.

http://www.dinet.org/NCS/ncs.htm

 

Hope this is a help to you!:grouphug:

[KidsHappen]

My 17 year old went through this when she was about 13. She had a history odd seizures as a child so we were concerned about epilepsy. After $1000s of dollars worth of neurological testing, EEGs and EKGs, we were told that is was vasovagal sycope which is not uncommon in teens especially if they are thin, are not well hydrated, or they comsume too much caffiene or energy drinks. She hasn't had anymore episodes since then.

 

The bluish tint around lips, fingers and toes can be caused by hyperventilating or forgetting to breathe correctly at all. I personally have had a full medical episodes where this happened and apparently I was forgetting to breath, was not breathing deeply enough or hyperventilating. Believe it or not, that is quite easy to do when you are in the midst of some other medical trauma.

Edited June 29, 2010 by KidsHappen

[Denisemomof4]

Hypoglycemia can also induce vasovagal syncope. In addition to hydrating her well, I'd make sure she is eating smaller meals every 2-3 hours. Some good snacks would be apple or celery with peanut butter, cheese and whole-grain crackers, raw veggies and yogurt dip, yogurt with oats & fruit or granola, hard-boiled eggs and whole-grain toast. The meals don't have to be big. Especially if she is thin, she just needs to have a steady flow of non-sugary nutrients coming. (bananas and grapes are very sugary)

 

The link below describes the bluish symptom your dd is experiencing. The article is on NCS (neurocardiogenic syncope) which is also referred to as vasovagal syncope.

http://www.dinet.org/NCS/ncs.htm

 

Hope this is a help to you!:grouphug:

 

I'm hypoglycemic and I believe she is. I have had her blood tested in the dr office but need to go find my glucose monitor to test her myself, ESPECIALLY during a spell....... but I do know they have happened after a meal. :sad:

 

THANK YOU for that link! It's the clearest description of her yet!!!!!

[Amber in AUS]

I have experience with low BP and i am surprised that she feels fine when she has an episode like that. A good sign i would think. When i have an episode I can feel the blood rush from my head to my feet, they feel warm and my vision blurs and my head spins, most often i reach for something to hold on to fearing i will fall over. My resting BP when preg is 110/50 the Dr's are always watching because it should be higher than your normal BP when you are preg, so my regular BP must be lower than that. My Mum also has low BP and we have been told it does run in families.

[Denisemomof4]

My 17 year old went through this when she was about 13. She had a history od seizures as a child so we were concerned about epilepsy. After $1000s of dollars worth of neurological testing, we were told that is was vasovagal sycope which is not uncommon in teens especially if they are not well hydrated, or they comsume too much caffiene or energy drinks. She has had anymore episodes since then.

 

The bluish tint around lips, fingers and toes can be caused by hyperventilating or forgetting to breathe correctly at all. I personally have had a full medical episodes where this happened and apparently I was forgetting to breath, not breathing deeply enough or hyperventilating. Believe it or not, that is quite easy to do when you are in the midst of some other medical trauma.

 

her bluing is always in the face, sometimes appearing like little bruises. I have checked her nails and didn't see any difference, and she feels and breathes fine during these.

 

I'm SO glad your dd outgrew the seizures!!! I know how important hydration is. I've learned even more so today! I also understand what you're saying about breathing, and believe it was a struggle years ago when she was having more drastic, and scary, episodes. I hope you never experience that again!

[Denisemomof4]

I have experience with low BP and i am surprised that she feels fine when she has an episode like that. A good sign i would think. When i have an episode I can feel the blood rush from my head to my feet, they feel warm and my vision blurs and my head spins, most often i reach for something to hold on to fearing i will fall over. My resting BP when preg is 110/50 the Dr's are always watching because it should be higher than your normal BP when you are preg, so my regular BP must be lower than that. My Mum also has low BP and we have been told it does run in families.

 

have you ever noticed changes in your color? She used to have more dramatic episodes, even worse than you describe earlier on, but now it's just the discoloration. I'm expecting/hoping that to get better, since everything else has.

[simka2]

I have nerocardiogenic syncope...it is similar, but not exactly the same. I also have extremely low blood pressure. I did grow out of most of my symptoms...until pregnancy when they returned. I do faint, lose vision, see stars, all of it. :) It also came back last winter when I was out in the cold alot teaching riding lessons and riding quite a few different horses every day. I have to be careful with how active I am.

 

The treatment for mine is certain anti-depressants...as it is triggered by a dopamine imbalance. When that stops working it's a pacemaker.

 

I also have to do the increased salt, lots of fluids. Anyway, that's my experience with it. If you want to you can pm me. :)

[Amber in AUS]

I have never noticed any colour change but then i can't see anything to know anyway at the time when it is happening. No one has ever commented to me, but plenty of people ask if i am OK so clearly i mustn't look good, pale probably, no one has ever said blue.

 

It must be horrible for your DD. I have never bothered with any kind of diagnosis, it is just something that happens from time to time without rhyme or reason. I have always put it down to low BP.

 

Just FYI she might have trouble donating blood if she ever wants to as an adult. I have been refused several times because my BP was too low, now i don't bother.

[jazzyfizzle]

I have the orthostatic hypotension and have also been given the order for Gatorades every day- (in my case the diet ones- diabetic)and the same- increase salt intake greatly and hydration.

A naturopath I know also did not like that idea. She suggested something similiar of using sea salt.

I've never had the blueing symptom though. The best description I have is that my head feels like it is squeezing on the inside.

There is a good doc. at the CC in Cleveland and also a good one in Toledo. (I know prob. quite far away).

Many hugs,

 

:grouphug::grouphug::grouphug:

[jazzyfizzle]

I

 

Just FYI she might have trouble donating blood if she ever wants to as an adult. I have been refused several times because my BP was too low, now i don't bother.

 

You are so right Amber. I have passed out from having blood drawn at the hospital lab. Head starts squeezing and then out. Good heads up.

[Denisemomof4]

You are so right Amber. I have passed out from having blood drawn at the hospital lab. Head starts squeezing and then out. Good heads up.

 

she nearly passed out when they drew blood for several tests years ago. When they drew blood a couple of months ago, she smiled and said, "That's it?" She only has ONE symptom now - discoloration, and she feels perfectly fine. :confused: Still, she may not present normally, although the above link pretty clearly described her episodes earlier on, INCLUDING discoloration.

 

I'll be monitoring her bp and blood sugar. I'm going to track them when I note discoloration.

[jazzyfizzle]

:grouphug:

Denise, could she be a pre-diabetic? I am so glad she feels fine even with the discoloration. These types of illness can be so elusive and there are not many docs who know what they are dealing with.

 

There are 2 I know of - Blair Grubb and Kamal Chemali, maybe they would answer email or phone questions. I believe Grubb does, or did at one point.

[Amber in AUS]

I'll be monitoring her bp and blood sugar. I'm going to track them when I note discoloration.

 

Sounds like a plan. If something shows up at least you will have documented evidence to take to the Dr.

[Denisemomof4]

:grouphug:

Denise, could she be a pre-diabetic? I am so glad she feels fine even with the discoloration. These types of illness can be so elusive and there are not many docs who know what they are dealing with.

 

There are 2 I know of - Blair Grubb and Kamal Chemali, maybe they would answer email or phone questions. I believe Grubb does, or did at one point.

 

her blood sugars have always been normal. Eating sugar won't make her crash, but she can only go 1.5 hours before she needs to eat again. She's ALWAYS hungry, but she's also growing.

[Jean in Newcastle]

Denise, is this dd Asian? Asian people often turn blue-ish when faint (perhaps how the loss of blood to an area looks with their skin tone?).

[Denisemomof4]

Denise, is this dd Asian? Asian people often turn blue-ish when faint (perhaps how the loss of blood to an area looks with their skin tone?).

 

no, this is my bio dd. I sometimes see a bluish tint on my youngest, too, but with her skin so dark I'm not really certain. I also think I sometimes am TOO hyper vigilant and wonder if I'm seeing things.

[tampamommy]

I'm not sure what type of hypoglycemia you have, but just be aware that reactive hypoglycemia is usually not detected with normal blood sugar tests. A specific kind of test is needed that I am hesitant to use with children as it requires especially long fasting. The way I have "diagnosed" it is to see what a difference the hypoglycemic diet makes...like night and day. Since this more rare kind runs in our family, that is good enough for me.

 

So a person with vasovagal syncope can indeed have normal blood sugar even after waking up from fainting if they have reactive hypoglycemia.

 

Hang in there! I know it is difficult. And give a hug from me to your dd too.:)