Saline - Infusion Rate

[Tobiano]

For those on IV saline who don't mind sharing some experiences (or feel free to PM me)...

1) How frequently do you get infusions?

2) What rate?

3) Bolus or pump?

Thanks!

[Chaos]

I currently get them 3x/week. I get them infused over 2 hours (500ml/hr) and have the saline heated to body temp (or higher if I can convince the nurse of the day to do so). Pump infusion. I've varied between 2-3x a week, but I have much better success with 3x/week.

[Tobiano]

Thanks Chaos! Anyone else?

[E Soskis]

I think you have to discuss with your MD about the rate of infusions. I used to take saline very frequently - several times a week. Since I am a nurse, I was able to administer them to myself and I judged the rate by how bad I felt. If I needed volume in a hurry, I ran it in quickly (1 hour or less) - if I just needed a boost, I would take 1-2 hours to receive the liter. My physician left it up to me because he knew I would do what was right. I have not been on infusions regularly for a couple of years but, am about to start again. Now, I have a central port and a perm cath with double lumen access. If I use my port, it only takes infusions at 250cc/hr max. If I use the perm cath with the large double lumen access, I could dump in a liter in less than 15 minutes. My experience has been that if you take it too rapidly, it simply runs through your system via the kidneys without much benefit. If the infusion is long and drawn out, it does not give the volume necessary to "plump up" the blood vessels. Once you start, you will quickly learn what works best for you.

[Tobiano]

Thanks E Soskis. I'm about to have a short term trial to see if there is any benefit. I should have a more detailed plan in place soon. Was just curious about other's experiences.

[Magik-Aimee]

I just started saline last week, at the moment I'm getting 1L infused over 1 hour, Once per week, but I'm talking to my primary monday to see about increasing the frequency. I didn't feel like the one liter did very much (and I had vomiting/diarrhea all day afterwards, so I only got about 2 good hours before it was out of my system.) I've seen other people write about the "dysautonomia cocktail" but i haven't seen much about it, so I'm sort of curious to find more information on it...

[Guest Alex]

I had saline occasionally (maybe 4 times), so I don't really think I can offer much here. I know that a lower infusion rate should help retain some of the fluid, but that's about it. I remember getting a liter in 20 min or less once - the ER dr who ordered it just let the saline run freely (my HR was dangerously high when that happened). It did help decrease my HR but my kidneys flushed it out very fast afterwards.

Magik-Aimee, is that a "dysautonomia cocktail" you're inquiring about or a "mito cocktail"...I don't recall ever reading about a "dysautonomia cocktail"?!

Alex

[Magik-Aimee]

Here is the site I got a lot of my saline information from:

http://potsgrrl.blogspot.com/p/in-support-of-iv-saline-therapy-for.html

And in the comments, someone posted this:

"I am told that Dr. Blair Grubb, who is one of the leading dysautonomia/POTS experts in the country, has come up with a "Dysautonomia Cocktail" he often prescribes to his patients. I am not sure if it makes the saline last longer in the body, but his patients seem to see improvement from it.

One of his patients posted the recipe for his Dysautonomia Cocktail on a POTS patient forum I belong to. I cannot be sure this is accurate, so perhaps you may want to call Dr. Grubb to discuss this. I have heard he is very nice.

-Dysautonomia Cocktail-
Magnesium sulfate 2 grams
Calcium chloride 1 gram
Ascorbic Acid 10 grams
Pyridoxine 100 milligrams
Dexpanthenol 1 gram
B-Complex 1 milliliter
Cyanocobalamin 1000 micrograms

Mix in 250 milliliters of normal saline. May be stored for 1 week in refrigerator. Must be warmed to room temperature prior to infusing. Do not microwave."

I think that's the only time I've seen that. Anyone else heard of it?

[Guest Alex]

Aimee,

I've never heard of that cocktail before, so thank you for posting that. Definitely check with your dr before trying it though. Those look (to me) like high doses of vitamins and minerals, and unless you're severely deficient some of those may actually do more harm than good.

Perhaps that patient really needed all those ingredients.

Personally I'd be leery of the magnesium sulfate as it could lower your BP and cause some GI problems as well, but then the calcium should antagonize some of the side effects from magnesium.

It would be interesting to hear from someone why has tried this. Also, I can't help but wonder if Dr Grubb's daughter is getting this - it's my understanding that she has a POTS diagnosis.

Again, thanks for posting.

Alex

[Magik-Aimee]

Yeah, I'm just sticking with normal saline for now, but I thought it was interesting.

[Tobiano]

Thanks for sharing.

[Kim Culver]

Hi...I'm Kim. I am new to this forum (as of today...yay me!). I have a 12 year old son that was diagnosed with POTS about 1.5 months ago. I have so many questions for all of you but this thread popped out at me because we were talking about starting saline for him. "we" being my husband and I. We have yet to find a dr in our state that will treat POTS in a child. We live in SW Florida and he was diagnosed at Mayo in MN. We couldn't even go to Mayo in Jacksonville because they don't start treating until kids are 16 years old. We do have an awesome Pediatrician so that does help.

Anyway, I'm rambling.... Can anyone tell me what the benefits of the IV saline infusions are? Does it help if you are already at an adequate fluid intake? My son spends almost all day, everyday in bed or in his wheelchair. He has not improved at all with just the fluids, salt, exercise, rest and vitamins. Looking for an alternative to harsher medications because he has other medical issues too. Any info would be greatly appreciated! Thanks :-)

[Tobiano]

Hi Kim,

Welcome and glad you found this place. Sorry to hear about the difficulties finding a physician who treats POTS in children. I'm glad you are working with a great pediatrician who can hopefully help your family navigate the system.

If you use the search function I think there are several other posts that may help to answer your question.

Please keep us posted on your son.