Standing order for IV fluids?

[Tap]

DD18 has POTS.  One idea for helping her on the rough days is to get IV fluids.  I know some people also do this due to dehydration from morning sickness or other illnesses.  Anyone have experiences you would like to share?

 

There is a hospital that is 15 minutes from my house that has an infusion lab.  They said that they can set her up with a standing appointment, or have her come in as needed, but the later may take a full day due to scheduling.

 

Any suggestions or ideas how insurance looks at it for billing?

 

 

[Spryte]

That's a good idea.  I don't have experience with billing insurance for that - but have had a similar experience with frequent IVs.  What you might run into, though, is that having an IV line inserted frequently is cumbersome, not fun, and generally frowned upon by the nursing staff I've run into.  I had a pic line for many months, but the initial insert was not done well, and I had to have it removed.  It was about a week before I could get the next line in, I think (it's been many years now, it could have been 5 days?), and I had to go to a local place to get my IV treatments every day, more than once.  The people there were not a fan of this plan, and felt it wasn't healthy - I don't recall all the reasons.  It seems like there may have been an option for a temporary something-or-other?  I wish I could remember more.  Maybe you already know the options?

 

I have POTS, too.  I have probably shared this website, but potsplace dot org or net or com (or something  :lol:) is really good.  Lots of good tips.  

 

I didn't really turn a corner with POTS until, frankly, we found the underlying cause.  That can vary for so many people, so mine probably isn't your DD's.  But, wow, it made a difference.

 

Here's what did help me, in no particular order, though you probably have tried all these:  I drank a huge container of salt water every morning, flavored with lime; added salt and extra water all day; at bad moments - I'd lie on the couch with my feet thrown over the back (lovely, eh?); getting up slowly; sitting with legs under me, or tucked somewhere, or generally just moving around a lot; Florinef.  The Florinef helped the most.

[Tap]

That's a good idea.  I don't have experience with billing insurance for that - but have had a similar experience with frequent IVs.  What you might run into, though, is that having an IV line inserted frequently is cumbersome, not fun, and generally frowned upon by the nursing staff I've run into.  I had a pic line for many months, but the initial insert was not done well, and I had to have it removed.  It was about a week before I could get the next line in, I think (it's been many years now, it could have been 5 days?), and I had to go to a local place to get my IV treatments every day, more than once.  The people there were not a fan of this plan, and felt it wasn't healthy - I don't recall all the reasons.  It seems like there may have been an option for a temporary something-or-other?  I wish I could remember more.  Maybe you already know the options?

 

I have POTS, too.  I have probably shared this website, but potsplace dot org or net or com (or something  :lol:) is really good.  Lots of good tips.  

 

I didn't really turn a corner with POTS until, frankly, we found the underlying cause.  That can vary for so many people, so mine probably isn't your DD's.  But, wow, it made a difference.

 

Here's what did help me, in no particular order, though you probably have tried all these:  I drank a huge container of salt water every morning, flavored with lime; added salt and extra water all day; at bad moments - I'd lie on the couch with my feet thrown over the back (lovely, eh?); getting up slowly; sitting with legs under me, or tucked somewhere, or generally just moving around a lot; Florinef.  The Florinef helped the most.

Thanks for your support, it is nice to hear that you found the cause!! It gives us hope.

 

She got diagnosed at 17yo (this past spring). Her first fainting spell and fatigue were in 6th grade, so we think it started back then.  We hope she is in the worst of it right now, and that she will start to recover.  If she goes down to much more, she will have to drop out of school till she gets better.  She is a Sr in high school, and has applied for a local college in the fall, but we aren't sure if she will be able to carry a full time load or not. 

 

She has missed 23 days  of school since fall.  She had to drop AP Calculus due to it.  After dropping that, this quarter in high school she is taking just PE (sits out every day--basically a TA for the teacher)  and has an online college Geography class. She is able to keep up with the one class, but it does take her a bit of stamina to do it.  Next term she has 2 college classes and it worries me. 

She is a cheerleader and works 10 hours a week.  They are hard on her body but important for her brain and stamina, so I allow her to continue. 

 

On top of the POTS, she also has ADHD, Dyslexia, Chronic pain, migraines with aura, significant Asthma and hormone issues. Those are just the big ones, LOL.   She is very intelligent, and works hard, but everything in her body seems to make her life overly complicated.  It is one of those times when I wish we could take her to a hospital who has a team of doctors that review one patient to see if they can figure it all out.  

 

That is why I am thinking about the IV fluids.  If that can help  her feel a bit better, it would be worth it. I am also thinking that while it is time consuming, she can do homework for part of the time, so it won't be a complete waste. She is excited to try it and doesn't bat an eye at blood draws so she isn't worried about the procedure. 

 

They can't find a cause for her POTS or her pain. In the past year, she has had a massive amount of testing to see if we could figure it out and no luck.  4 MRIs, nasal scope, EMG,and $2000 in blood work (including looking at Lymes). She has tried 2 acupuncturists (including cupping), PT.   Her Cardiologist is a POTS specialist but I don't like playing the games with his office to get appointments. We lucked upon a neurologist at a local teaching hospital, who happened to work under POTS specialist at the Mayo Clinic.  She took over her care and has been great. 

 

Weekly deep tissue massage helps the most  for her pain, (and she gets a minor chiro adjustment then as well).  She hurts way less on the weeks she makes her appointment. 

 

I can't help but believe that several, if not all of her issues are related.  We just need to figure out what the key is. 

Edited February 10, 2017 by Tap

[Mrs Twain]

Drinking Gatorade (or 1/2 Gatorade, 1/2 water) gives exactly the same results as IV fluids. The only difference is that the Gatorade method is safe.

 

You do not want to ruin your child's veins by doing frequent IV's if you don't need to. Also you do not want to risk infection if frequent IV's are unnecessary.

Edited February 10, 2017 by Mrs Twain

[mom2samlibby]

Your poor daughter.  That sounds miserable.  

 

Would B12 injections help with some of her symptoms?  https://bewellandb12.wordpress.com/2013/09/29/pots-vs-vitamin-b12-deficiency-a-venn-diagram/comment-page-1/

[magnificent_baby]

Drinking Gatorade (or 1/2 Gatorade, 1/2 water) gives exactly the same results as IV fluids. The only difference is that the Gatorade method is safe.

 

You do not want to ruin your child's veins by doing frequent IV's if you don't need to. Also you do not want to risk infection if frequent IV's are unnecessary.

 

Agree.

 

My patients have chronic health conditions and many, many of them have very little IV access due to scarring from so many procedures/IV's. I wouldn't go this route unless all other options have been explored and is encouraged by her specialist.

 

I would also be very concerned with overhydrating her and causing her electrolytes to become too low.

 

I am wondering why she can't drink the extra fluids? (again with the concern that it could also cause electrolytes to become diluted)

[Jean in Newcastle]

Drinking Gatorade (or 1/2 Gatorade, 1/2 water) gives exactly the same results as IV fluids. The only difference is that the Gatorade method is safe.

 

You do not want to ruin your child's veins by doing frequent IV's if you don't need to. Also you do not want to risk infection if frequent IV's are unnecessary.

 

Dd is doing the Gatorade thing for this same issue. 

[zoobie]

Drinking Gatorade (or 1/2 Gatorade, 1/2 water) gives exactly the same results as IV fluids. The only difference is that the Gatorade method is safe.

 

You do not want to ruin your child's veins by doing frequent IV's if you don't need to. Also you do not want to risk infection if frequent IV's are unnecessary.

I agree. If she's able to keep down fluids, I would not go with an IV. DH had to drink a ton of diluted Gatorade for a while with a different medical issue, and we found the powdered mix to be the most cost effective. He took the large sports-sized water pitchers with him.

[Jean in Newcastle]

I like Ultima brand electrolyte powder.  Dd also takes buffered electrolyte pills with salt called Saltstick caps.  She takes the ones without caffeine in them.  We get them at the running store. 

[Tap]

She uses 3 to 6 Nuun Active tablets daily (eletrolyte tablets)instead of gatorade. It stll isnt enough. She gets really sick of saltly drinks so she starts unconsciouly avoiding drinks altogether.

 

We have other electrolyte drinks as well to give her variety. The Nuun tablets are lightly flavored so they arent as overwhelming to drink as a gatorade. She would prefer plain water but even with 80 ounces, salt tabs and florinef...it isnt enough.