Down Syndrome and Menstruation

  1. I am a Paramedic and am coming to you pediatric experts for some insight. I have a stepdaughter whose half sister has Down Syndrome. She is about 14 or 15 I think. Since she has begun menstruating, she has been having an unusual array of symptoms during that week only and returning to her normal levels when not on her period. These include loss of coordination, behavioral problems, inability to walk, crawls on her belly, becomes almost catatonic, etc to name a few. This time has been abusive toward her family but not toward family friends. Hits family with objects then laughs.

    Has anyone run into anything like this and do you know what might be done to lessen the severity of these episodes? Her family is going nuts trying to maintain. Any suggestions, advice or insights to go to her doctor with may be helpful. They have put her through a battery of tests, including CT's, EEG's EMG's and have come up blank. That is why I am coming to the people that deal with this everyday, her doctors seem clueless right now.

    Contact me via pm or email on my profile. Thank you all!!
    Last edit by prmenrs on Apr 8, '05
  2. Visit mmarc57 profile page

    About mmarc57

    Joined: Apr '05; Posts: 1


  3. by   prmenrs
    I searched Google; here is the link to the search:

    Some of these sites have discussion boards; I did not see any specific info on what you asked, but you could try those boards to connect w/parents who have dealt w/this issue.

    I wish you the best.
  4. by   DDRN4me
    Many children with disabilities seem to have very different behaviors when pms and menstruating. i have seen increased seizure activity, exacerbated behaviors, general malaise and many other "odd behaviors". Not sure why, think it may be related to hormonal changes or pain. sometimes we try prophylactic ibuprofen to help alleviate some of this. hope this helps.
  5. by   CrunchRN
    I have had patients in the past whom we gave Depoprovera injections to in order to prevent menses and the associated issues. Had several who would have a lot of distress and increased seizure activity if they had a menses. It is something to consider, but you have to weigh the side effects of bone loss and weight gain when making the decision. It really was a life saver for some of these girls. Best of luck to your family.
  6. by   humglum
    Most of our kids have increased behavioral issues while on their menses. We don't have any with downs syndrome at the moment, but our kids with autism, PDD, and other neurobehavioral disorders certainly exhibit increased incidence of self-injurious or aggressive behaviors around that time. We have them on BCP for regularity and generally treat with ibuprofen for suspected pain/discomfort. It seems to help.

    Really, it may be as simple as pain control, as most of these kids can't verbalize in order to have their needs met.