BYC Member Interview - Cynthia12

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Hey, Girly- girl! It's about doggone time you had one of these interview thingys done! Great interview, too, by the way! Just wish you'd have mentioned one thing (among several) about you that immediately drew you close to my heart - - - - so I guess I'll just have to brag you up a little bit....

Folks, Miss Cynthia here was instrumental in getting National Recognition for Spina Bifida Awareness Month several years ago. It's a cause that's near and dear to my heart and to hers, and I'm so grateful that my granddaughter, Little Miss Kendra, helped us connect! "And now you know the rest of the story"! Of course, since you've all read the interview and/or shared her posts, you know that she's just special all the way around!

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Aww Blooie..thanks for that.

Yes, I helped with the Spina Awareness for Oct. here in the state of Utah. That was a long time ago. Now, the cancer awareness is pretty much mentioned in Oct..but, It really helped.
And with me also being a part of the 5 yr. test that Washington did helped too..this being the National part. It was through that testing period that they found out about the lack of folic acid in the beginning of pregnancy was a big culprit. I helped by sending blood to the state of Washing as soon as we knew we wanted to try. They in return, they sent free Pre Natal Vitamins. Took me 3 months to get pregnant..sent blood once a month from the time I tried to get pregnant, and then through the pregnancy. Sent them a photo of the great result of the waiting for my fourth child..as healthy as could be. They were excited, they were getting great results from everyone in the test. Can't remember the number now, but there were a few!
Eat your leafy greens and start those pre-natal vitamins as soon as you know that you are going ....to try to get pregnant. The numbers of this birth defect is down since the news got out with the results. Yaay!
 
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Cynthia12 said:
Aww Blooie..thanks for that.

Yes, I helped with the Spina Awareness for Oct. here in the state of Utah. That was a long time ago. Now, the cancer awareness is pretty much mentioned in Oct..but, It really helped.
And with me also being a part of the 5 yr. test that Washington did helped too..this being the National part. It was through that testing period that they found out about the lack of folic acid in the beginning of pregnancy was a big culprit. I helped by sending blood to the state of Washing as soon as we knew we wanted to try. They in return, they sent free Pre Natal Vitamins. Took me 3 months to get pregnant..sent blood once a month from the time I tried to get pregnant, and then through the pregnancy. Sent them a photo of the great result of the waiting for my third child..as healthy as could be. They were excited, they were getting great results from everyone in the test. Can't remember the number now, but there were a few!
Eat your leafy greens and start those pre-natal vitamins as soon as you know that you are going ....to try to get pregnant. The numbers of this birth defect is down since the news got out with the results. Yaay!
Click to expand...
In our case Kendra's SB was a direct result of Depakote (valproic acid) used to control her mom's seizures. It's also the med that resulted in Katie's problems but hers are relatively mild - mild autism, one rib missing, and asymetrical hips. Unfortunately Depakote is the only medication that controls Jenny's seizures. So in her case she could have mainlined folic acid and it would have made no difference. Since Kendra was born, I've become militant about telling every young lady not to wait until she's planning a pregnancy - I believe every young woman of childbearing age should take a folic acid supplement. Kendra was totally unplanned....it took the kids 11 years to conceive Katie and her OB told Jen that it was unlikely she would conceive again. After Katie she made sure! We owe a huge debt to you, Cynthia, and so do millions of healthy babies all over the nation.
 
Blooie said:
In our case Kendra's SB was a direct result of Depakote (valproic acid) used to control her mom's seizures. It's also the med that resulted in Katie's problems but hers are relatively mild - mild autism, one rib missing, and asymetrical hips. Unfortunately Depakote is the only medication that controls Jenny's seizures. So in her case she could have mainlined folic acid and it would have made no difference. Since Kendra was born, I've become militant about telling every young lady not to wait until she's planning a pregnancy - I believe every young woman of childbearing age should take a folic acid supplement. Kendra was totally unplanned....it took the kids 11 years to conceive Katie and her OB told Jen that it was unlikely she would conceive again. After Katie she made sure! We owe a huge debt to you, Cynthia, and so do millions of healthy babies all over the nation.
Click to expand...

Depakote! Have a sis that was on that for yrs. for seizures. Mentally handicapped. When my mother passed, I had her for a couple of yrs. First thing I did was see that she was not taking this prescription like she should..wondered about it..took her to a specialist. Mom had been taking her to the same Physician for yrs. Years on this stuff. When the Neuro saw her, put her on something different. He couldn't say enough bad about Depakote. Long story short..she still didn't take this all of the time. I was leaving it up to her to take her own meds..she did..supposedly while living with mom. Well, I wasn't seeing any seizures..she had had the mild starring type. Started when she was very young, 3 yrs of age.
I took the bottle out of the cabinet. She didn't even notice it gone for about 2 weeks! I told her, she is fine. She was fine! No more seizures. When she was on the Depakote, she would go take it when she wasn't feeling well..I'm sure, there were withdraw effects. I remember taking her to the dr. for a sprained ankle. Her dr. for yrs. He went over a few things. When I told him, that she wasn't on any meds for seizures, wow, you should have seen his face. Yep, all those yrs. with that stuff for nothing.
Your daughter needed these meds. Lisa didn't. That dr. just kept giving her those meds for over 30 yrs. :/
Just sharing. Not sure the meds did anything to her. Saw the word Depakote up there..lol...had to vent. Some drs.!

Anyway, see this is new news to me. Wonderful the things they are finding out. It's been since the 80's/90's since I've done anything with awareness. This is great to know! Needs to get out there more..I didn't know!?!

http://www.drugdangers.com/depakote/side-effects.htm

Lots of info on it, and a lot have to say they don't know for sure, then they suggest it could be this or that. :/

http://www.medicalnewstoday.com/articles/220424.php
 
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Yep, nasty stuff. But Jenny has severe gran mal seizures with no aura first - no warning that a seizure was coming, and can have several in one day requiring hospitalization. I've seen her crack the seat on an oak chair when she went down and hit it with her head, and that was on the meds her GP had been giving her for years with a few tweaks here and there for dosages. I took her to the neurologist that my sister worked for and the doctor tried several other combinations before she tried Depakote as a "last resort". At that time they just "suspected" it might cause birth defects but nothing had been firmly decided. It worked. Jenny has been seizure free on it for years. When she was expecting Katie they tried her on a newer med so she wasn't taking Depakote, but as you well know the Spina Bifida defect occurs so early in the pregnancy that you don't even know you're pregnant yet. She started seizing again and life became an endless cycle of never leaving her alone, protecting her unborn baby from trauma, and trying to get her under control. Back on Depakote and it all stopped as rapidly as it started. But even knowing the risks, I can't blame them for wanting to have the same things everyone else wants - a family. Katie and Kendra are our gifts, and we are so blessed.
 

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