Salt & Fluids ... Are We Wasters?

[jjb]

I know extra salt and fluids help us to function better, but why?

Is it because we for some reason cannot utilize the typical amount?

Do we waste?

I know for me, fluids go right through me and sometimes I can still feel dehydrated. I do best when I eat foods w/ a high water content.

When I hike, I do lots of salting but it comes right out of my skin ... and when I dry sometimes you can see a salt residue.

My daughter is similar. Fluids go right through her. She drinks a ton, but sometimes still shows signs of dehydration clinically (a high SG).

When she was a baby, her feet were always salty. Neg for CF.

[jump]

I don't have an answer to this, but I do know that what you described happens to me, too.

If I drink a glass of water, about 20 minutes later I have to pee SO BADLY, like clockwork. It often seems like I'm losing waay more than I drink, too -- like if I have a small glass of water my bladder is completely full. Incidentally, this happens MORE when I'm a little dehydrated, like in the morning. If I've had a lot to drink in a day, this happens less.

I also get symptoms of dehydration (unbelievable thirst, dry skin, fast hr, very dark urine) without showing clinical signs of dehydration in my bloodwork. Often I am SURE I'm dehydrated from how I feel, but when I pinch my skin it still springs back fine.

What does SG stand for?

[smiles]

Yes, I think there is some reason that fluids seem to go right thru some of us. I am like that too. I am on IV fluids daily and still sometimes can get dehydrated. Fluid volume seems to be a big deal in treatment of many types of dysautonomia.

Smiles

[EarthMother]

One of my early doctors (when we just called it orthostatic intolerance) warned me against drinking "too much" because I would tend to throw off my minerals because the water was washing everything out of my system. I also pee constantly. I actually tend to feel worse when I am drinking the "recommended" amount of water daily.

I was on DDAVP for a few years and felt MUCH better when I was taking it. It allowed me to drink and RETAIN water. As well as not get up a few times each night to go pee. But my Doctors took me off DDAVP when I was in the hospital last June. I can't remember their rationale, but I do miss it.

So for me ... for now ... I continue to salt load, but I do drink only a modest amount of water.

~EM

[ajw4790]

Hi,

You have to make sure to drink plenty of water (no caffeine or other diuretics). And consume plently of salt to hold on to the water. The salt has to be in your body in excess at the same time that you are drinking more fluids for the salt and water loading to work right. If you are sweating it all out, then maybe discussing with your doctor about the excessive sweating and a way to curb that, so that you retain more salt and water. Also, work to make sure that all of your other electrolytes are balanced.

[ana_22]

I read somewhere that Greg Page's (AKA the yellow wiggle) OI was due to his body not retaining salt........has anyone any idea of how this would be measured?

[firewatcher]

I read somewhere that Greg Page's (AKA the yellow wiggle) OI was due to his body not retaining salt........has anyone any idea of how this would be measured?

Your sodium excretion (salt wasting) can be measured in a 24 hour urine catch. It can also be measured peripherally in a serum sample, but it won't show how fast you are excreting it.

[mkoven]

I think this is why florinef works for many of us. It helps us hold on to the salt and fluids. Without it, I also pee out much of what I drink.

[jjb]

I think this is why florinef works for many of us. It helps us hold on to the salt and fluids. Without it, I also pee out much of what I drink.

My card has always been reluctant to put me on florinef or any meds as I have an AV block. SHe has always felt I am senstive to meds card wise ... she is right.

She was closer to putting me on it this past year, but I asked her to hold off.

Still, I understand how florinef works (or at least undertsand what it does for us) but I am wondering why we are wasting if we are wasting.

Is there an underlying issue that can be corrected.

I have always wondered about this but am now more than ever.

I have mentioned Ava has some pretty quirky seizures ... because she has autonomic seizures AND probable autonomic dysfunction, she is at increased risk of SUDEP (unexpected death from epilepsy) so I am forever looking for answers and trying to minimize the effects of her aut dys along w/ her aut seizures.

During her seizures she has alway had an odd smell to her. Used to be clearly metallic, sometimes it was a burnt smell but lately it is just an odd smell. Well this last time I decided to check her urine. She was spilling large ketones (the highest amount), highest specific gravity & lowest PH. These are signs of acidosis. I am thinking the dehydration is triggering the acidsosi. She is on a low carb med diet, but it alone should not be triggering this and it only happens every now and again.

During one of her prolonged seizures, pedi thought she "smelled" dehydrated. My daughter drinks a ton!

I think I am going to sched an appt with ped metabolic specialist to see if she has any thoughts on why folks w/ dys may be wasting fluids & salt and if she knows of any way it could be prevented (other than the usual salting or florinef).

Thanks everyone for your input.

[flop]

During a seizure the muscles contract a lot and use up a lot of energy (it is like doing an intensive exercise session) so I guess she may make ketones to try to get extra energy. (I remember my Mum telling me that she produces a lot of ketones whilst in a long labour with me (I was a big baby!)). Ketones give the breath a funny smell that is described as "pear drops" (candy) or like acetone in nail varnish remover.

I hope you find a doctor that can help Ava.

Flop

[jump]

Also, acidosis can trigger seizures. Is it possible that her body enters into a state of acidosis first and then she has difficulties? Or do you think the seizures trigger acidosis?

[jjb]

During a seizure the muscles contract a lot and use up a lot of energy (it is like doing an intensive exercise session) so I guess she may make ketones to try to get extra energy. (I remember my Mum telling me that she produces a lot of ketones whilst in a long labour with me (I was a big baby!)). Ketones give the breath a funny smell that is described as "pear drops" (candy) or like acetone in nail varnish remover.

I hope you find a doctor that can help Ava.

Flop

Hey FLop. Muscles contract during the convulsive seizure. Ava does not typically have those, in fact her entire body becomes very limp. SHe has autonomic seizures which are typcially non-convulsive simple partial seizures. The symptoms are similar to dys symptoms. She as nausea, sometimes vomiting, tachy, low o2, flushing etc.

I am familiar w/ the smell of ketosis, it is typically more of a sweet smell, but Ava's is not. It is just an icky smell. More like the smell of a throat infection (which has been thoroughly checked out).

It may though be a smell of dyhydration... I don't know. It could just be how she smells during ketosis. Again I am just not sure.

Is it possible that her body enters into a state of acidosis first and then she has difficulties? Or do you think the seizures trigger acidosis?

Jump, yes I am thinking she maybe acidoitic during those episodes. She has been vulnerable to acidosis even before the diet. So that is another question, why? Typically on the keto diets for epilepsy, kids may have acidosis in the beginning but then they are fine. Ava gets it on and off. She is on a much higher carb count than the typical classic keto. It seems to be more fluid related somehow. Also she seems to need to maintain an even carb count, not just higher or lower. All of her carbs are low glycemic (meaning they do not cause a big sugar spike)

She also has had low free & total carnitine in the past which commonly occurs w/ the diets, but interestingly without any supplements, her levels rose to above normal.

She does seem to have metabolic quirks.

And your question about sz trigger acidosis, I am not sure. Probably not but in the past her seizures have causes lots of other metabolic abnormlities.