[mommyjamie]

I know many of our children have issues with bedwetting and I thought this site would be my first stop in my crusade to get DDAPT off the market. My dd who is almost eight has spent the past four nights in the PICU due to severe seizures brought on by a drop in her sodium levels all a side effect of this drug. She is an otherwise very healthy child. Watching her battle for her life and seizing for almost nine hours was excruciating. I would have gladly changed bedding a million times rather than go through this agony. She was unresponsive and her pupils were very dialated. When she finally woke up, she could barely speak and had little to no motor control. As a result of the seizure meds, she became combative and oppositional. I have never been so scared in my life. She is improving, but the fact that DR's are prescribing this dangerous drug is frightening. PLEASE, let everyone you know with children know about the dangers of this medication.

[Lylac]

Ok my first thought is were her sodium levels being monitored at all. Along with other hormones.

My daughter has been on desmopressin(DDAVP) since birth for diabetes insipidus. It stops liquids from running straight through her body. Without it, she wouldn't be able to keep her body hydrated. She has had no problems with it at all. And if she didn't take it, she would surely die. So I am thankful for this drug.

I'm sorry that your baby and your family is going through all of this And I know it must have been terrifying to go through.

My daughter already has seizures and takes multiple meds for them, but they aren't caused by ddapt.

Again I'm sorry, but from where I'm sitting, my daughters life depends on this medication.

[Lylac]

After doing more research, I found this. My daughter takes her's by mouth. It is compounded into a liquid and her dose is specially made for her.

This is scary

2 Deaths Spur Bed-Wetting Drug Warning

FDA Warns That Some Patients Taking Desmopressin May Be at Risk of Seizure and Death
By Miranda Hitti
WebMD Medical News
Reviewed By Louise Chang, MD
Dec. 4, 2007 -- The FDA today warned that some patients taking the drug desmopressin, including children who take desmopressin to stop bed-wetting, may be at risk of seizures and death.
The FDA notes 61 postmarketing reports of seizures -- including two deaths -- in patients taking desmopressin.
Those seizures were linked to hyponatremia, an imbalance of sodium levels in the body, according to the FDA.
It's not clear why the patients who had seizures were taking desmopressin, which isn't just used to treat bed-wetting.
But among the 25 patients younger than 17 who had seizures while taking desmopressin nasal spray (intranasal desmopressin), bed-wetting was the most common reason.
Children taking intranasal desmopressin to treat bed-wetting are "particularly susceptible to severe hyponatremia and seizures," states the FDA.
About Desmopressin

Desmopressin is marketed as DDAVP Nasal Spray, DDAVP Rhinal Tube, DDAVP, DDVP, Minirin, and Stimate Nasal Spray. Makers include Sanofi Aventis and several companies that make generic drugs.
Desmopressin is an antidiuretic. It limits the amount of water that's eliminated in urine.
The body needs to balance its levels of water and sodium. Too little sodium or too much water can cause hyponatremia, which can cause seizures and death.
It's not clear if desmopressin caused the two patients' deaths or the other seizures. The patients who died were 28 and 80 years old, according to Reuters.
FDA's Advice for Patients

The FDA provides the following advice for patients taking desmopressin (and their parents):

• Tell the doctor about all drugs the patient is taking.
• Tell the doctor if the patient has a history of hyponatremia.
• Supervise the patient's use of intranasal desmopressin
• Restrict fluid intake from one hour before to eight hours after taking desmporessin tablets.
• Promptly call the doctor if the patient's water intake changes.
• Promptly call the doctor if hyponatremia symptoms occur.

Hyponatremia symptoms include nausea, vomiting, fatigue, muscle cramps, and weakness. Those symptoms don't always mean the patient has hyponatremia, so check with a doctor to be sure.
Desmopressin Use

The FDA has made some changes in its approved uses of desmopressin.
Nasal sprays containing desmopressin (intranasal desmopressin) are no longer approved to treat bed-wetting in children.
Desmopressin tablets shouldn't be taken by patients with fluid or electrolyte imbalances. Fever, recurrent vomiting, diarrhea, vigorous exercise, and other conditions can cause those imbalances.
All desmopressin formulations should be used cautiously in patients taking certain drugs that may cause them to drink more fluids. Those drugs include tricyclic antidepressants and another type of antidepressant called selective serotonin reuptake inhibitors (SSRIs), according to the FDA.
The FDA has asked for those warnings to go on desmopressin's label.
SOURCES: FDA: "Information for Healthcare Professionals: Desmopressin Acetate." News release, FDA. Reuters.

[SAHmom]

OMG! Thanks for posting this! My 9 year old was prescribed this for bedwetting although he has only taken one dose of it. He pees on the days he takes it and I told the doctor since he controls when/where he urinates, the medication doesn't do any good, so he stopped taking it. Now this gives me more of a reason for him not to!

Prayers for your daughter and your family!

[mommyjamie]

Gee, I was so tired last night I didn't even notice that I had mistyped the name of the med. I don't mean to imply that the medication isn't useful for other purposes, but just to treat bedwetting the risks are far too great. The thing that gets me is that the FDA has made those changes yet our DR and pharmacy still used it against FDA reccomendations!!! Even more frightening is the fact that most of the DR's in the hospital have told us that they have prescribed it themselves for this purpose. Last night was our most peaceful so far!!! I think the meds are starting to wear off so hopefully today will be much better. She is still a little loopy, but I can take it as long as I can see those beautiful little eyes and hear her sweet voice calling for me!!!! For the prayers!!!

[marythemom]

My 13 yr old daughter has been taking this for years. We tried the nasal spray briefly because the pills don't seem very effective (she wets the bed 2-3 times a week). It was a pain to administer so we switched back to meds (she takes many others too). She has chronic constipation and this has caused many bladder infections. She had surgery for a severe issue with a bladder infection when she was 9.

She had issues with enuresis and encopresis during the day while in foster care, but they discovered it was behavioral instead of bladder issues. We haven't had a problem with this since she moved in with us 1 1/2 years ago.

So for those of you who have done research - if she hasn't had a problem in all the years she's been on it - should I worry?

Mary
mom to T(9), K(11.75), H(13) and D(14.75)
"The hardest years in life are those between ten and seventy." -Helen Hayes (at 73)-

[Lylac]

My opinion..and it's just mine alone. If it hasn't bothered her yet, it should be fine.

mommyjamie..I'm not meaning to pick bones, but in your first post, you said plainly said that you was on a crusade to get DDAPV off the market.

So my question is..if they did take it off..what happens to my baby? die? What about all of the other people in this world that rely on this drug to live? Let them die too?

When you want a drug taken off the market..you "are" implying that nobody is safe taking it.

The crusade that you should be on is one that stops doctors from prescibing it for bedwetting. And again parents of bedwetters have a choice as to give this medication or not.. Me or my daughter doesn't have a choice.

Like I said I'm not picking bones..just wanted people to know that this drug does do good things too.

[mommyjamie]

Mary, according to what I have read this can occur at any time and the length of time a child has been taking it is not an indicator of the safety for that child. One of the technicians at the hospital had a nephew who had been taking it for two years and then had an experience very similar to ours. I would talk to your dr, but I would stop the meds if it is only being given for bedwetting.

Lylac,
The main problem I have is that so many Drs are prescribing the drug for bedwetting even though the FDA does not recommend it any longer. Of course in a situation like yours the benefits outweigh the risks so it would make sense to continue with the medication. I have a huge problem with the fact that we were not given accurate information about FDA recommendations in order to make an informed choice in administering the drug. NO ONE told us!!! I don't imagine there is a parent out there who would gamble with their child's life on an issue like bedwetting. If someone had to watch a video of what we went through, I seriously doubt a parent of a bedwetter would choose to give them the medication. Also, I'm not sure but the tablets are supposed to be less risky than the nasal spray which my daughter was taking. For your child, does it make a difference which form she is taking? If so it may be a safer option to take the tablets.

[Lylac]

My daughters desmopressin is compounded. They grind the pills and mix with a liquid, which gives them desmopressin acetate. It's a liquid that she takes orally..well by her gtube now. Hers is specially made for her size etc..

Her dose is 0.3 ml 2 x's daily..but it's only 10 MCG's per/ml. Thats micro grams.
So hers is an teeny tiny dose.

Another thing about the nasal spray is, it's really hard to regulate the dose.

Hope your baby is better!

[momraine]

My son used to take it in pill form for bedwetting. He never had a problem but it also was not effective so we stopped.