hormones and women

[pentakids]

It seems like this keeps coming up. Hormones and what effect they have on teens in puberty, women when pregnant, and women in menopause. When I was a teen I was told by the pediatrician that my muscles where too short for my legs and I just grew too fast, and the cramping was just had growing pains...When I was pregnant, well before anyone knew what was going on with me, I felt so much better! I also felt great when nursing my kids so I nursed all of them... even tandem some because they where 18 months apart and didn't want to feel crappy again ( I was nursing or pregnant for 14 years straight)....When in labor with three of my 5 kids I had what I now feel where some kind of dystonic storms (the docs thought were seizures) that were brought on not only because of the pain but the hormone change when going into labor (just my feeling). Three of my kids as babies where diagonosed with stymulosensitive myoclonus right after birth...I recently found their pediatric neurologist after 20 years (he is currently at Johns Hopkins) and he remembered me and my kids because of how unique we were...he thought the kids could have also had some kind of dystonia not only stymulosentitive myoclonus.... I went on yutube and found videos of babies with myoclonic dystonia and some of them look just like my kids (it made me cry) but my kids grew out of the movement problems but still have had some other strange,very minor, problems but nothing that has kept them from growing up healthy and happy. Now I am in menopause, and I am sure the hormones again are effecting my DRD . Women are the last group of people researchers look at when trying to study diseases and disorders. We only have each other and our stories but I think it is important that we make each other aware of what we go through and have gone through... please!...this is not to make people worry, or make them scared about their teen girls, being pregnant or growing old...it is just that if there is a chance that by sharing what we have gone through as women it might help us not feel so alone or crazy and could provide a little information to make decisions! The more I learn about DRD and dystonia the more I realize how little the doctors have even started to learn about it (of course everything takes money). Every day is a challenge no matter what life brings us and remember the glass is always half full!!! As women we are really strong! I would not change anything that I have gone through to miss out on my family and children! We are strong women!!!! I just felt that we need to support each other... pentakids

[YG>]

Hi Penta, tell me about the dystonic storms you had during labor. Is that like muscles cramps? While in labor with my oldest, I felt I was being electricuted, but that could've been back labor.
Penta, I can't believe I'm back here at this site. I was so cramped up tonight. Silly me I went out in the cold when I was tired. Three blocks to the store and back. I dragged myself into a store on the way home to stretch. That made it a bit easier to get home.
Penta, my twins are turning two. Amazing, huh?

[pentakids]

electrocuted is a good way of putting it...if anyone touched me or made a sudden move, my arms would pull up and my legs would spasm...of course with the pain of contractions this would happen...the nurses would be having a fit but my doc....who was more like a mid-wife, and who had been through this with me before just closed the door....turned off the lights and made it as quiet as it could be...and let me do my thing...no drugs...no crazy IV's...no one bothering me...and my body would just do what t needed to do and deliver the baby...it was NOT fun but from what it could have been...like when I delivered my third child and the doctor was an %^$& ...and he made everything worse by miss diagnosing what was happening...my fourth and fifth babies were everything I could have hoped for. My body would jump like it was being electrocuted...I pray my girls never have to go through anything like that ever, but I feel blessed to have found a doctor willing to help me through what my friend, who was my coach for my last baby, said was very hard to watch even after I told her in detail what was going to happen. It was very shocking to her to have to see it but she was very glad to have been there for me. I hope this makes some sense. I think that doctors don't have a clue what happens in our bodies so we just have to take it one day at a time....have a great day!!! penta