How do you feel about new treatments and clinical trials?

Are you aware of any new treatments being researched?

How do you feel about participating in clinical trials?

What would prevent you from involving your child in a medical research study?

Interact and reply in the comments below! :)

22 Replies

  • Not sure about new treatments. I know coffee or energy drinks help calm my son and many other adhd but for trials if it was a food or essential oils I would but I wouldn't give my child drugs . Could never put my kids at risk of what these drugs could do to him now or later in life it's why I refuse to allow my son any medication.

  • Mountain Dew works just like amphetamines on our son. Calms him right down for an hour for a can of it. Goodness only knows what it is doing to neurotypical kids!!!!

  • I try not to let him have energy cans but don't mind the coffee now and then. Is brothers always give him one mind 🙈

  • Sounds interesting, I might try it sometime!

  • While we're on holidays I think I'm going to try a Mountain Dew.

  • Or a coffee I.m not a lover of energy cans cause to many can halm you and mountain dew has been halmfull to many people . But coffee works just aswell it's the caffeine that calms them . Try coffee first and see how they go it don't work on everyone see but most people x

  • Thank you for replying. I'll try that first. He's unmedicated at the moment so I will try it defiantly.

  • It's not something I'm aware of atm but he's already medicated and the meds work along with young carers and help with social interaction and barnados social work help for the school issues.

  • I'm not currently aware of new treatments but to be honest I haven't been looking.

    I feel my sons age would make me apprehensive about medical studies, I don't think he is mature enough to understand yet.

  • We would love to try our son on the non-stimulant Guanfacine. But our Trust won't allow its prescription although Nice has approved it. We hear from the US that Guanfacine works very well for kids with FASD and ADHD.

    We haven't heard about clinical trials of drugs, but would think about participating very seriously. The FASD diagnosis is a complication, For example, methylphenidate has a horrible effect on many with the condition while dexamethasone works well. But we aren't against trying new drugs.

  • That auto corrected dexamphetamine to something weird!!

  • Guanfacine sounds interesting.

    My son is possible FASD, but methylphenidate works well for him.

  • Not aware of any trials. Our son got to the stage at about 18 where he didn't really need to keep taking the medication as he could function reasonably well without it and didn't want to appear different from his peers. Not sure I would be keen to be involved in trials -rather wary of new medications that haven't been around long enough for long -term side effects to be apparent. Guess we were lucky that the 'usual' medication worked

  • Does your son still hate being inside mine hate it even husband can't stay indoors when home down she's messing about or out back in all wethers.

  • No I'm not aware of new treatments and as my son is now an adult it's not my choice so I can't speak for him

  • I'm not aware of any new trials. When my daughter needed medication every day, I'm not sure I would have signed her up for any trials. She found out that coffee and caffeine in sodas worked just well for her. I'm glad she got through her schooling reasonably well, but in retrospect if we had medicated her earlier she would have done so much better.

    I feel schools should acknowledge that not everyone learns well in a sit down and listen situation. Her psychiatrist suggested we read The Edison Gene: ADHD and the Gift of the Hunter Child by Thomas Hartmann. This was helpful in getting everything in perspective and showing us that possibly it was us at fault and not the ADHD child.

  • I don't know about any trials but would consider it if I felt it could help my child. Although I'd research carefully to ensure there was no risk. We haven't tried medication so it feels a bigger step than therapy or supplements.

    I haven't tried caffeine but have suggested it to my husband. She hates coffee but maybe would tolerate a cup of tea.

  • I'm not up to date with new treatments, probably I should do some research, but I'm too tired!

    I might let my son get involved in clinical trials, but with caution, it would depend on what it was. I'd be very cautious if it was a first stage trial that had never been tested on kids. I did involve him in a meningitis inoculation trial years ago. It was all done at our home, which was great. I wouldn't drag him to a hospital for any trials.

    I would probably be willing to try dietary trials, if he would cooperate.

  • Fasd kids do seem to be a slightly different case and my understanding is they respond differently to drugs. My son has arnd diagnosis (alcohol related neurological disorder -I think that is right!) he also has epilepsy for which he is on epilim plus he has add - difficult to spot amongst his ache class mates as he manages to be distracted in his own little world! He is now on medikinet (after false start with the drug beginning with c sorry can't remember) but the fasd consulatant also recommended getting him on guanacine (sorry I know it isn't right Spelling) or whatever it was but you try getting CAHMS to try that . Much of the problem is that other drugs take up to 3 months to build up in the system also if not right one you have to slowly withdraw and try another - not great for schooling or the child so I think they try to get them on the best fix all rather than individual approach

  • I am unaware of any new treatments being researched. I don't think I would say no to any clinical trials but would have to see the ethical guidelines for the trials to make sure that provisions are in place to ensure safety in the clinical trials. Prevention would be if the trial was on medication that has no background research on the medication effects.

  • I'm unaware of any new trials as my son is an adult now he wasn't very impressed with treatment when he was younger he just wanted to be normal which unfortunately he wasn't I don't think he would be interested in participating

  • It depends on the clinical trial. We'll certainly consider a tested and verified medication. I think what would prevent me from doing it are, of course, the potential side effects or if the side effects are virtually unknown. The other component would be whether or not placing him in the study would also require removing him from any known treatments that we know work. That would seem to be like a step back for him especially if he was placed on the "placebo" during the study.

    That being said, we tend to try to be supportive of medical studies when we can be and when we know the risks are very minimal.

You may also like...