2nd Trimester

Would you let your child particiate in a drug study?

On the radio this morning they were talking about a study drug used to help with seizures. It was for children under 2. I mean I know they have to know if it works, I just dont know if I would want my child taking a study drug. Is this just me?
«1

Re: Would you let your child particiate in a drug study?

  • No, but my child had so many allergies after she was born, it would worry me to give her something untested.  There is a reason why pregnant women legally can't participate in drug studies, and it should be the same for very young children.
  • nope, i am right there with you, i would not let my baby do it.
  • No, I wouldn't. Preclinical studies are usually done in rats, mice, or other small animals, and the toxicities (or lack thereof) for that population won't necessarily be the same as those for humans in the later-phase trials. Seems like too much of a risk for me to take with my child.
    "To me, you are perfect."
    image

  • I think it would depend on the situation. If my child (God forbid) had seizures that were uncontrolled by other drugs, I'd probably consider the study drug.
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • In the right situation, yes I would. In these studies there has usually been so much pre-research done and off label use that shows the FDA that research is possible and officially needed for it to then be a labeled use and many times the study is to put a labeled us on something that has been going on for a long time.  But then, I work in a field where I see this going on and how necessary it is.
  • If my child had a disorder that was not controlled on another medicine, and the doctors didn't have any other options, I might enroll my child in a drug study.  It would be a difficult decision to make, but if it was our only option, then I might do it.

  • image lissasue3:

    I do not know. I say no now because my daughter is healthy, but if she had seizures for which no other medication could help then I might be interested. 

    There's just no way for me to tell now.  And it would depend on the seizures, how bad they were etc...

    Well what it said was "if your child currently takes at least one medication for epileptic seizures, they may be eligible to participate in this study" I dont know. I guess if nothing else was helping I might. I just dont know. That is a choice I pray I never have to make.
  • No drug testing on babies or animals!!!

    Adult humans, who cares? Stick out tongue

    image Baby Birthday Ticker Ticker
    image

    I am friends with President Obama. I asked him to dress up in an Easter Bunny costume and show up at my parents' house with a giant check for $1 million a la Ed McMahon on Easter Weekend. We were going to make them think that they had won Publishers Clearinghouse sweepstakes LOL. As soon as they answered the door, we had our friend stage a robbery - they made it look like everyone in the Publisher's Clearninghouse van was violently murdered. They threw the "bodies" out of the van onto the street and peeled out. We had a fake ambulance and police show up. Then my parents' neighbors came by with a basket of kittens - they were SO cute! Just when my parents were so freaked out by seeing kittens after a murder/robbery AND having won $1 million, we had Pres. Obama take off the Easter Bunny head and say "Surprise!! You're going to be grandparents!" My parents will never forget that moment. - Pillowass

  • LCB34LCB34
    10000 Comments 250 Answers Combo Breaker
    member

    image New_MrsP:
    I think it would depend on the situation. If my child (God forbid) had seizures that were uncontrolled by other drugs, I'd probably consider the study drug.

    I agree with this.  I'm guessing that when you have a sick child you would be more willing to some type of trial (whether it be drugs, trial surgery, etc) in hopes of healing the ailment.

  • image LCB34:

    image New_MrsP:
    I think it would depend on the situation. If my child (God forbid) had seizures that were uncontrolled by other drugs, I'd probably consider the study drug.

    I agree with this.  I'm guessing that when you have a sick child you would be more willing to some type of trial (whether it be drugs, trial surgery, etc) in hopes of healing the ailment.

    I agree as well.

    image
  • image starlettedir:
    image LCB34:

    image New_MrsP:
    I think it would depend on the situation. If my child (God forbid) had seizures that were uncontrolled by other drugs, I'd probably consider the study drug.

    I agree with this.  I'm guessing that when you have a sick child you would be more willing to some type of trial (whether it be drugs, trial surgery, etc) in hopes of healing the ailment.

    I agree as well.

    Me too. 

    AlternaTickers - Cool, free Web tickers AlternaTickers - Cool, free Web tickers
  • image Brezza:

    No drug testing on babies or animals!!!

    Adult humans, who cares? Stick out tongue

    Pedophiles, adults who hurt/assault/molest/torture children should be tested on is my belief.

    Alot of cancer drugs are not FDA approved yet and go through years of testing - and have been shown to be safe afte it was too late for some people who didn't recieve the drug.  I have known some pediatric oncology patients whose parents have used drugs through their MD's/hospitals that were not FDA approved - but wasn't a "drug study"

    I guess it I would agree with some PP, it would definetly depend on the situation, and I think my answer would be yes, I would let my child have a drug that wasn't FDA approved & still in the clinical trials, especially if it was terminal.

     

    Sawyer Quinn (09/06/06), Rory Keaton (04/07/08) and Kinsley Saffron (10/12/10). Forever and ever my babies they'll be. A rose can say "I love you",orchids can enthrall,but a weed bouquet in a chubby fist,yes, that says it all.~Author Unknown
    Image and video hosting by TinyPicImage and video hosting by TinyPic Image and video hosting by TinyPic
  • image Brezza:

    No drug testing on babies or animals!!!

    Adult humans, who cares? Stick out tongue

    Yes, that sums it up!

  • image lissasue3:

    I do not know. I say no now because my daughter is healthy, but if she had seizures for which no other medication could help then I might be interested. 

    There's just no way for me to tell now.  And it would depend on the seizures, how bad they were etc...

    This. And if it were a study drug that could potentially help with a fatal illness, i.e. leukemia, and other drugs haven't worked, I definitely would.

    image

  • Dh used to work in this industry and... no.  I would consider it only as a totally last resort, but the situation would have to be very serious, possibly life threatening.  
    Photobucket Baby Birthday Ticker Ticker
  • ONLY if my child were having seizures and I have tried everything else under the sun.  then I would be willing to try experimental drug treatment.  I would want to know details and the pros and cons before I said yes though.
  • I would have to have more information on the situation and the consequences.

    I have had a few friends to trial studies with their kids.  One took their 2 year old to St. Jude Children's Research Hospital to participate in a new trial for a specialized form of radiation.  Their daughter had a brain tumor and nothing in the general tested marketplace was going to help her.  It was life or death.  They were willing to take the chance.

    I also have a friend whose twin sons have a very serious seizure disorder. They are both under 1.  Nothing they have tried has worked and the seizures are getting worse.  Some of the drugs have actually caused other serious issues.  Seizures can be deadly, cause brain damage, etc.  I can see how if you were watching your child helplessly and nothing available was helping how you could try a trial drug as a last resort.

    So I am not one to judge.  I wouldn't do a trial if I had other options that were proven safe and effective.  But if I was ever in a position where DD had something that was not being touched by any current medication - I have no idea what I would do :(.

     

  • Noooo way, I wouldn't do it. If they don't know if the drug works, they might not know of any (or all) side effects of the drug. I wouldn't want my LO to be the guinea pig for something that can effect her well being.
  • Only under extreme circumstances. But, here's the irony--I don't really think that many people do want to participate in these things, which means there are so many unknowns for babies. My BFF's little girl had mysterious allergies that nothing known could solve. Because no one volunteers their babies to test new options, it is hard to come up with them. Same thing with looking at categories of meds during pregnancy--there are so many things we may never know if they are safe because pregnant humans are not going offer themselves as test subjects. I'm not saying that we should offer ourselves or our kids up--LOL--just that I recognize that it is a tricky area. For as much medical knowledge as we do have as a society, there is SO much that we don't have.
  • Love the name "Torin" My friend (jewlery store owner) is named Torin. Great guy!
  • For an actual medication? I doubt it. I let my autistic son participate in a study about a food supplement with omega three fatty acids (fish oil :P ), but I am not sure I could trust an actual medication.
  • For anyone who says drugs should not be tested on children, as someone in the medical field, I know just how important it is for drugs to be tested on children. Children are not mini-adults and they process drugs differently, so if we use a drug only tested on adults, then we are giving it blindly to children not really knowing the effects (which happens). They would not test a drug on children unless it had extensive pre-testing and we really needed it. So, yes, under the right circumstances (other seizure meds not working, which is what this study is for) I would sign my children up. Without these studies we would never truly know if ANY meds were safe for kids!
  • I would only do it as a last resort, if there are no other alternative, and the current treatment or not simply not doing anything causes the seizures to remain a life-threatening issue.
  • I agree.  If it wasn't for a trial of a form of radiation my big sis might not be here today.  She was only 2 and the doctors had tried everything with no results.  My parents decided to go with the study b/c it was a better option than nothing/death.  She is now 29!

    If my child had uncontrolable seizures and nothing was helping I would look at the options.  I wouldn't say "no" just because it is in the trial stage.  It is a very difficult choice to make when it comes to the health of your child.  My heart goes out to anyone who has to make a choice like this.

    Heather
  • I would never let my child do a drug study.  That is the whole point of a study.  People do die during studies you just don't hear about it.  very scary
  • This is a really interesting question for me because I actually work in pharmaceutical research - I am the person that finds interested patients, coordinates any variety of physical and diagnostic testing to see if some one meets criteria for a particular study, etc. Anyway, before I entered this field, I absolutely felt the same way that many of you do about it. I would never have even considered a drug study for myself, a child, or, really anyone I knew.

     I think in many respects, though, my opinion has since changed. I don't say this to be a huge advocate or to convince anyone else - although I do think there is a lot of misinformation or just not enough information in general. Drug studies are monitored not only by the physician participating in the study, but also the drug companies, the FDA and IRB's (basically companies that exist solely for the purpose of monitoring the safety and potential benefits of a patient).

    Often, a person who is involved with a drug study receives much closer and personal care than if he or she went to a regular doctor's appointment. Any medication that is currently approved by the FDA for use has had to go through the same process. At the same time, I do recognize that it can be kind of scary to think about you or your child taking a medication that is being 'studied'. At the end of the day, I think I would absolutely be hesitant about placing my child into a study until I felt really well informed of every possible known detail of the study but I would definitely be receptive to that information, first. I mean, that's your baby of course!

    I guess the point I am really trying to make is that I truly believe drug studies can be beneficial, especially when there are few if any other options, but one always always always needs to be very thoughtful and informed of any medication, approved or otherwise.

  • Ditto! As long as my little man is healthy I agree its easy to say NO WAY! My husband and I are so concerned about the horrible possibilities that we saved his cord blood. Better safe than sorry! I just pray that each of us get to maintain the possition of "over my dead body will someone run trials on my child"
  • image New_MrsP:
    I think it would depend on the situation. If my child (God forbid) had seizures that were uncontrolled by other drugs, I'd probably consider the study drug.

     

    I have to agree, If the doctors can't figure out how to stop the seizures, I would consider putting my kid in the study program. It could help and then it would be a great thing. And the drugs have been tested to an extent, they are just doing a larger group study in these case. Plus as a teen I was put in a drug study and it wasn't bad, and you got paid to do it so other than the fact they may find a drug that works for you, you get compensation for your participation.  

  • My brother was born with VATER syndrome. He's had 2 kidney transplants and was VERY small for his age. He participated in a drug study at age 7 for a growth hormone. It was a success and at 30 he is now a proud 5'10 which is a huge difference for most renal patients. He works at a kidney camp  in the summers and is the tallest one there. You think, height, so what? But it was a big deal for him and because my parents are so tall he fit the study. He's so grateful for that chance and that he's just taller than me (his lil sister). He also participated in a drug study to prevent kidney rejection at 23. If you had a real sick kid, and you researched and knew what really was involved in drug studies you might change your mind about participation. It's not for everyone but is extremely important.
    Pregnancy Ticker
    BabyFruit Ticker
«1
This discussion has been closed.
Choose Another Board
Search Boards