Ddavp/desmopressin Questions

[Kyler]

New doctor prescribed DDAVP for my son's worsening POTS symptoms and I have some questions before we start it. I read everything on here in the archives but the most recent discussions are from 2012. I understand the whole fluid sodium balance thing. We will be starting with 0.2 mg during the day on Monday. Kyler's symptoms have gotten worse and he had to go completely homebound for school and he has been having excessive urinating as one of his many symptoms.

My question is if you eat high sodium foods steadily throughout the day can you still drink small amounts of liquid? My son currently takes in about 8000 mg/day of sodium. The doctor said only a few sips of liquid for 8 hrs after taking it. That's not a problem at night but during the day it might not go well.

For those who have taken it or are currently taking it how much fluid (estimated ounces per day) do you take in?

My other concern is that if this makes his body "normal" while he is on it then what will his other meds do to him while he is on ddavp bc he take a lot of meds.to try and have normal vital signs. I am worried that for instance that with lots of extra fluid in his system that the 60 mgs if midodrine may hurt him by raising his bp too high. I plan monitoring him closely but I am SUPER freaked out by this one. We are only trying because he has basically become house bound at this point.

Any experiences or tips would be appreciated. I'm so glad that I have this wonderful resource. Totally love you all!!!

[issie]

Get in touch with firewatcher. She knows a lot about this one. I'd PM her if she doesn't respond sooner.

Hope it works out great for him!

Issie

[corina]

I can't help you with the med worried mom, just my experience with starting a new med while on my "best working combo".

When I started octreotide, my doc wanted it to add to my combo. I immediately felt it working within 2 or 3 minutes and wanted to take off my abdominal binder and compression hose. A few weeks into the octreotide we started to wean me off of the combo, taking it one med at the time, lessening that med in small portions (I was on mestinon, ritalin, bb, ssri and perhaps one other that I forgot). Afer coming off of everything (which took quite a long time, can't remember exactly) it turned out that I couldn't do without the ssri (standing hr shot up again) so I went back on it.

What I'd like to point out by saying this is that it worked really well for me to add one med which started to work immediately while being on other meds.

Hope this helps and best of luck to your son starting the ddavp!

[Kyler]

Thank You guys. You are helpful as usual.

[looneymom]

My son takes 40 mg of midodrine 3 times a day. He also takes 2 grams of salt with this. I tried to keep his fluid intake of water and gatoraide very high 4-5 liters in the beginning but he had to go to the bathroom constantly. Currently he drinks 2-3 liters of water/gatoraide per day. This works much better for him. I also monitor his blood pressure daily. I have made some changes in his diatery needs and his blood pressure is staying up . He is 12 and has been homebound this school year due to his POTS condition.

[Angela]

wondering with those of you mommy's who are on this forum for your children, did they have big growth spurts?