Looking for help with daughter.....

LLWinston44 · 08-17-2006, 11:40 PM

Hi everyone,

I am SOOOOOO glad to have found this forum! A friend directed me as she's been here as a lurker herself.

My story is this.

When my daughter (now 13) was 7, she started developing pubic hair. Lots of it. As well as underarm hair and breast buds. We took her to the doctor who said she was an early developer and that we'd watch. I wasn't happy with that, so we took her to a pediatric endocrinologist. At that time, they did a bunch of different tests. They said that she would start her period by the time she was 9, maybe 10 and that she was not in precocious puberty. (Also her bone growth was advanced by a year or so. Not sure if that's relevant to anything but thought I'd mention it.)

Fast forward to now. I took her in to the doctor last week thinking maybe she had Cushings. She's had weight problems as she's grown up, but they've changed lately to where she's doing Weight Watchers, but instead of losing weight, she's gaining. I also mentioned that she still hadn't started her period, but that wasn't my main concern as I didn't realize it was a problem. He said that according to her tests, she should have started by 10 at the latest, or if we're pushing it, 11. So he sent her for blood work and an u/s. We went for the u/s yesterday, but nobody told us she needed her bladder full! So we're rescheduled for Monday. Anyhow, the doctor called yesterday and said that her bloodwork came back with elevated insulin. I could barely follow what he was saying except the PCOS and Metformin. He said after the U/S we'd get together and go over everything.

In the meantime, I've been online researching PCOS and OMG does it fit! Besided the obvious lack of a period, just the emotional and physical things are incredible! So many things add up now, and I look back and feel horrible. I've so often accused her of being lazy. Of not putting forth the effort, when actually the effort WAS great even though it wasn't efficiant.

I'll be roaming the board looking for information. Anything anyone has to offer to me would be invaluable. I'm wondering though.... does PCOS ALWAYS show up on the u/s?? So if we don't see anything then is it NOT PCOS?? If it wasn't, what would the elevated insulin indicate?

I guess all of our questions will be answered next week, but until then I've got to figure out to explain all of this to her.

Anyhow, thanks for reading!!!!!!

JennaBC · 08-18-2006, 12:17 AM

First of all....let me just say...Way to go Mom!...It is so wonderful to see a mother that's truly an advacate for her daughter. I wish that I had known that I had PCOS sooner. It would have explained alot of things. Also just because the U/S doesn't show anything doesn't mean that she does have PCOS. I have it and my last 3 u/s were all clear, but when I was 18 I had to have surgery because I had tons of cysts on my ovaries. So the cysts can come and go....I also think that Met and the IR diet would really benefit your daughter to feel her best. The met might even help her to start her period.
Your Dr might suggest trying BCPs to regulate or start her cycle....Personally, I don't think that BCPs are a great idea for someone with Insulin Resistance or PCOS....because they just put more estrogen into our bodies that already have too much of it.

If you ever need to talk I'm around.

k8p · 08-18-2006, 12:27 AM

You're a wonderful mom!

canadian mom · 08-18-2006, 01:29 AM

Hi and welcome! I found this site while researching for my daughter also. My daughters ultrasound didn't show any cysts at all. She was dx based on blood tests (high testosterone level) and absent periods. Please don't beat yourself up for what you might of said before. As Mom's we do the best we can. Hugs to both you and your daughter

LLWinston44 · 08-18-2006, 02:58 AM

Wow, thanks SO much!! I'm really glad I found this forum! I have heard that BCP can make it worse, and so I'm NOT going to allow her to be on them at this time. The Metformin is the doctors first choice at this time. I'm also glad to know that cysts don't always show up on the u/s. I wonder, if there aren't any, what should I ask for test wise??

Thanks again all!!!

JennaBC · 08-18-2006, 04:09 AM

I would ask for a testosterone level and thyroid test. Also you might want to have them test her prolactin level. The testosterone and thyroid test though would tell you alot and both are linked to PCOS.

cysterof2miracles · 08-18-2006, 04:22 AM

diet and exercise are important for PCOS'ers. It can keep some of the side effects away.
Met is a miracle drug for many of us. It is how after years of infertility I was able to have 2 beautiful kids. It brought my periods back w/in a month, I lost weight and I felt much better!

About the bcp. My hormones were so crazy that I was having heart palpitations and I thought something was seriously wrong. The doc told me it was hormones, put me on Yasmin and things calmed down.
The progesterone in Yasmin is derived from spirnolactone instead of testosterone which helps many of us.

You are a great mom for catching this early and researching the possibilities. I would have been much better off had someone helped me early on. When I had problems they just stuck me on reg. bcp's and I gained a ton of weight in one year. It was horrible and really made my PCOS worse.

Zinzara · 08-18-2006, 05:37 AM

I was your daughter about 24 years ago! I struggled for so many years taking BCP off and on and hating myself for being so "ugly" and "freaky". I did not have polycystic ovaries in the early years and they actually didn't show up until well into my late 20s. Eventually, because I never got good advice or had good control over this disease, I ended up with a severely impaired ability to produce insulin (overproduction of it for so many years) and full blown insulin dependent diabetes. As hard as PCOS was to handle, the 2 diseases together are devastating to deal with on a daily basis.

Please do a bit of research into metformin in adolescence, recent research has shown that it is the best course of treatment.

Here are many links to help you:
http://www.soulcysters.net/quick-lin...-guide-180907/

Your daughter is so very lucky to have you looking out for her.

Jashobeam · 08-18-2006, 03:08 PM

You are a great mom! My Mom also took me to the doc when I was having problems, but he just said I had "homrone problems" or some such thing, did no tests and I had to wait decades to get bloodwork done. I don't have cysts from what I understand and my bloodwork was not way out there, but I have a lot of the symptoms and my GP and gyn say I do have PCOS.

Check the link Zinzar posted as well these links:

http://www.soulcysters.net/your-daughter-pcos-139783/

5 Types of PCOS

http://www.soulcysters.net/pcos-our-children-137562/

New ped- checking for PCOS at 3 yrs old?

one-hit_wonder · 08-18-2006, 05:37 PM

Diet and exercise are key. Take a look at an insulin resistant diet in conjunction with the Met.

Lemonade Ladybug · 08-18-2006, 08:30 PM

interesting about the u/s and full bladder... they wanted mine empty!

Glad you are here...you are a treasure to help her understand this.

While I don't like BCPs...will tell you that I was put on it at the age of 12 for heavy bleeding and it masked PCOS until I got off the to get married (age 31)....I NEVER would have been able to handle PCOS at a young age and was greatful I unknowingly was keeping my hormones balanced by being on them...but I don't like synthetic stuff...so what a contradiction I am... ha ha...

Hopefully you can find what works for you and your daughter...

Stick around and read up...there are amazing cysters around here to help guide you/be a shoulder...etc...
LL

LLWinston44 · 08-19-2006, 03:06 AM

Thanks again to you all!!!!! You're wonderful! I canNOT believe how the 'outside world' is reacting to this!!!!!!!!!!!!!!!!!!!!!!!!! My sister in law said that "Valarie needs to know that this isn't an excuse for her to not eat right, or live a healthful life!!"
My mother said "Her insulin was probably elevated because she ate sugar before the test......" @@ Another woman said something along the lines of "Well it's not a big deal anymore. She'll take some medicine and be fine, she doesn't need to be upset." My aunt was going to cancel their long awaited cake decorating class so Valarie wouldn't be tempted to eat the wrong foods. Other people think that if she loses weight then all her problems will be fixed. I'm finding that it's just something that I'd rather keep out of discussion because people really seem uneducated and make comments that end up being really hurtful. SO, when everyone calls wanting to know what happened, I'm just going to tell them that "Valarie would rather I didn't talk about it, as she feels it's private. She'll be fine though"......

She was really upset last night, but is a bit better today. She said that "I just want to be normal, but even when I'm normal I'm not normal." I told her that the medication will help her to become 'normal' and she replied that she "wanted to do it on her own like other girls get to do...."

On another note. I just got the fax from the doctor with the lab results. It's interesting because a lot of the results won't indicate if it's normal range or not as they don't have a pediatric range. However, after searching the web, I found a site (http://www.labcorp.com/pdf/Pediatric...ology_0981.pdf) that gives pediatric ranges. The testosterone and LH ones were high according to that.

Not sure what to post here, or even if you all will know what they mean, but here are the ones that I think you'd want.

Estradiol - 60
FSH - 4.8
LH - 12.9
Testosterone - 69
Insulin - 22
Cortisol - 11.6

R0xyg4l · 08-19-2006, 04:10 AM

Quote:

Originally Posted by LLWinston44

I'll be roaming the board looking for information. Anything anyone has to offer to me would be invaluable. I'm wondering though.... does PCOS ALWAYS show up on the u/s?? So if we don't see anything then is it NOT PCOS?? If it wasn't, what would the elevated insulin indicate?

PCOS is not always blatant on the u/s. Me being dx with PCOS was presumptive. For my u/s it appeared as though there were cysts but they were quite small, not enough to definetly say for sure. So even if there is not blatantly cysts then it still may be PCOS. I'm not sure what elevated insulin would further indicate.

I'm sure someone has more educated answers, but welcome to SC!

R0xyg4l · 08-19-2006, 04:14 AM

It does look like her testosterone is elevated with the lab sheet. Which means that her estrogen is most likely elevated and then when the system has too much it converts it to testosterone. Also, there is a Teen area for PCOS. Maybe she will find comfort knowing she's not alone. Best of luck!

Jashobeam · 08-19-2006, 04:53 AM

Thank you for posting that link!

I know how your daughter feels, as I went thru the "I'm not normal" stuff when I was a teen with so many symptoms of PCOS. I agree with the PP that she should check out the Teen board. I also agree you are right in keeping this from people if that is your daughter's wish. People can be so flippant or rude about wanting to brush off or take control of other people's medical problems.