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14 year old daughter diagnosed with PCOS
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cheeseheadmom posted:
Hi--last week my 14 year old daughter was diagnosed with PCOS, right now, she is on progesterone to try to get her to have a period, then we are looking at birth control pills to try to regulate her periods. I am just trying to gather information so that I can share it with her and we can make some informed decisions. The thought of starting my daughter on hormones at such a young age concerns me, but not as much as the consequences of not doing it for now. We are thinking about a Paleo based diet to help stabilize her weight and then bring down her cholesterol which is already high. She went from having difficulty gaining weight to now considered obese within less than 18 mos. All started around puberty and since she is my only daughter, initially we assumed the slight changes in her weight were related to puberty. But, it has really gotten out of hand in 7-12 mos, and at this point, she is 7 mos without a period. I am looking for suggestions/advice from anyone on their feelings about long term birth control use, and also any tips suggestions on things that help or make things worse. So far, weight, no period, and cholesterol are the only symptoms we have really experienced(or connected). Having not experienced this myself, I really lack the knowledge to speak to my daughter from that "life" level. Although I know PCOS is going to likely be a life long thing she has to deal with and consider, I don't want her to feel like it's the end of all of her plans for life. I would much prefer to arm her with the information and skills to manage this disease as much as is in her control. Any help/insight from you all is greatly appreciated! Thanks!
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mabeline12 responded:
Hi. I wasn't dx until I was 17/18 but I never got my period at all. As far as the hormones, the sooner that they are in balance the better off she will be. Its really hard to have out of whack hormones, aside from the mood swings and depression they can cause really bad migraines. I was getting either headaches or migraines about 5-6 days a week for close to 5 years because my hormones were so off. Plus too much or too little of hormones cant be good for a developing body. It will probably be a lot of trial and error for what birth control or what doseage of Provera (progesterone) are right for her. I would really encourage her to get to know her body, keep track of everything what meds, how much, for how long she takes them. Everyone's PCOS is different so there is not a set way to control it. The more that the two of you pay attention to what her body is doing the better off she will be. What I've noticed is that because there is no set game plan for everyone that doctors have a hard time figuring it all out and if you keep track of whats working, whats not, whats changing with her the easier the doctor will be able to help. When I wasn't keeping close track of what was going on with me, what meds I was on, how much, for how long I got rather shotty care. It was like they were stabbing in the dark. Once I started to keep track of everything and how it made my body react the better I was able to communicate with my doctor. Doctors have a lot of people to see and they don't keep much straight maybe a 5-10 min review of a chart before they come in to see you, so if you have all the info yourself, in my experience it just seemed to work better. Do you know if they test her insulin levels at all? If either of you have any questions or anything and you want to contact me feel free to any time. I will gladly speak about any of my experiences Ive had related to my PCOS. My email is jmael12@gmail.com
 
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cheeseheadmom replied to mabeline12's response:
Thank you so much! I am a huge believer in being an active participant in medical care, so your suggestions to keep track of everything and the fact that it helps with better care is so encouraging! They did check her insulin levels at the same time they checked her cholesterol(that was all done by a new pediatrician we saw who didn't want to address the fact that her sudden changes in weight might have an underlying cause, just that she needed to see a dietitian and make lifestyle changes--which from what I read about PCOS--can be a huge battle to conquer the weight issues) and insulin levels were within normal range at that time. We are going to have them checked again in 3 mos. She had her period every 6-8 weeks from when it started 8/09 until around 7/10. Then nothing. I just wasn't ready to accept that as normal, so although taking my 14 year old for a pelvic exam at the gyn, I felt better to go thru that than go undiagnosed. The dr I found for her has been fabulous and actually wanted all of her records ahead of time so she could study them, and when her labs were in, she said it would take her a few hours to go over them and determine what the next step would be. I feel she is being very thorough so far. I don't know why I didn't think about mood swings/depression when hormone levels are involved, but I honestly hadn't. I will start having her keep a "diary" of that and any body changes. When we went to see the dr, prior to her exam and any labs, she said although her symptoms fit classic PCOS, it is unusual to be dx so young. From the reading I have done, it sounds like a lot of women suffer a long time before being dx. I am hopeful that early treatment will save my daughter from a lot of the frustration that comes from not being dx and just suffering. Wed. is her last dose of progesterone, so hopefully that will get us started down a better road.Thank you so much for your information.
 
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MSUphysicsFRIB responded:
The Paleo Diet is great for lowering insulin levels. However, if she went from skinny to obese in less than 18 months, there's a good chance she has binge eating disorder. Eating disorders (anorexia, bulimia, and binge-eating) cause insulin resistance, which causes high insulin levels, which in turn causes PCOS.

Trying to stick to a strict diet such as the Paleo Diet could make the binge eating worse.

If you have not seen her eat a lot, she might be doing it in secret and she probably will not want to talk with you about it. In that case, referring her to a psychologist or psychiatrist might really help. If she does eat a lot in front of you, then she might feel comfortable talking about it with you. However, therapy would probably still be really beneficial.

It takes 500 extra calories per day to gain 52 lbs of fat in one year. I don't think 500 extra calories in one day counts as a binge. So, if you think she has just been eating a bit too much every day (rather than binging once or twice per week) and that led to the weight gain, then she might not have an eating disorder, and the Paleo Diet might work very well for her.
 
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cheeseheadmom replied to MSUphysicsFRIB's response:
Thank you for the input on the Paleo diet...Although I intend to use it as a guideline, and maybe at times stick strictly to it, it has to be a lifestyle choice she chooses, so we will see what it develops into. I don't think she has an eating disorder--have had friends with many food issues in my past, so very keen to pay attention to that with her. I think what happened is she ate about the same as she always had, maybe just slightly more, but then puberty hit and the hormones and the PCOS just created the perfect storm for her to put on weight...and, the obese term was only used by the pediatrician that we saw 1 x(we had a fabulous pediatrician, but since she was getting older, I thought she would appreciate being able to see a woman, so we switched--big mistake!)...anyway, the GYN didn't use that term at all and so I am not sure if it's accurate...but it was a big change for her. She loves veggies(very few that she will eat cooked, mostly raw) and fruit..and meat...so just the grains and sugar that might be missed...but grains probably more than sugar. We can always use those as a special treat here and there, like I said, not going crazy strict, just trying to improve things enough to give her an advantage.
 
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hgreenwood7058 responded:
I was diagnosed with PCOS when I was 14 also. My menses came very early (age 9) and they went okay for a little while. Once I hit age 11 I started developing terrible abdominal pain and my cycles began to be very irregular. They a lot of the times would think I had appendicitis because the pain was bad. When I turned 13 they started trying me on different birth controls to help control the symptoms. They tried me on Alese,Ortho Evra, The patch,Depo,Apri ect... It took me until I was 18 to find the Apri birth control pill that actually worked and helped keep my symptoms at bay. After 3 years though I developed high blood pressure with it so i had to discontinue it. After just a month I started with symptoms again.I talked with my dr who ended up putting me on yaz which has work since. Although my weight goes up and down it has not gone up to the obese range. I do have high cholesterol though. Which is a common thing with PCOS. My mom was diagnosed 2 years after me and then a year after that my aunt was diagnosed. What I learned from doing research papers for college is that not only could the mom be a carrier of the gene but the father can as well. So this may be the reason why you haven't experienced it. My mom too has problems with cholesterol. My triglicerydes went from 187 to 297 in just over a year with diet and exercise. They said if it gets up to 300-350 they would initiate medications. The other thing too for the weight that they should consider checking is not only just the blood sugars but also for thyroid disorders because that is also a common side effect from PCOS. This can affect weight.It is a dealable condition which is good. I am no longer on birth control as I am working on trying to conceive (I miscarried this past week so i have to wait another cycle). It is important to get things under control the younger you are because it give you a better chance of potentially having children in the future and with control you may have less scar tissue which could cause pain in itself. I was put on the progesterone off and on as well not all that fun. I was told about a year and a half ago that I should have atleast 1 cycle type of thing every 3 months.The reason for this is that the longer you wait for a cycle the more likely it will be more painful. The treatment is the same(progesterone) if your not on birth control.I am 23 and so there is a future ahead of her but getting a knowledge base is a really good thing to have. I hope this helps some. Good luck.
 
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MSUphysicsFRIB replied to cheeseheadmom's response:
So, are the doctors mainly concerned that she hasn't started her periods yet? If so, that surprises me a little, because I didn't start my period until I was almost 15 (14 and 9 months), and my sister was 15 when she started her period. My mom was 16. Though I was upset because I felt like I was the only girl who hadn't started her period, I don't think any of us ever had concerned doctors. Do they have different guidelines now (I'm 24, so it's not like I'm "old")? Or maybe my doctor wasn't on-top-of things? Or maybe your daughter's doctor is overzealous?

I recall having a high testosterone level come back when I was fourteen or so, but the doctor never mentioned it. I looked over all of my blood work when I was ~20, and I came across that testosterone test and wondered why nothing was done, especially since I suffered from acne. My mom thought that the doctor was waiting for my thyroid to even out (I had Graves' disease).

Anyhow...it's great that she doesn't have an eating disorder! I also have some close friends with some disorders, so when I hear about rapid weight gain, that's the first thing I think of. You're right that PCOS (and the concomitant insulin resistance) predisposes people to rapid weight gain. I recall gaining almost 10 lbs once over the Holidays when I wasn't careful and ate sweets and starches. I didn't binge, and I don't think I ate any more than the rest of my family, but gained more weight. I actually used to swing between gaining and losing. I would lose 10 lbs over a 3-6 month period, then gain it back over 3-6 months. That's not the best way to "maintain" one's weight! Metformin has helped keep my weight more stable.

When I did the Paleo diet, I really missed grains. I incorporate 1-2 servings now so I don't miss them. I also eat 1-2 servings of dairy because I have osteopenia.

However, despite "missing" grains, I never felt hungry on the Paleo diet, I had tons of energy, and I lost about 12 lbs (which might not seem like much, but I went from 130 to 118 lbs and I'm 5'7"). For whatever reason, when you get most of your calories from meat, fruit, vegetables, and nuts, your body just feels very content and it is not agonizing to lose weight. I think the high-protein is part of the key. I was eating ~120 g/day at that time.
 
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cheeseheadmom replied to hgreenwood7058's response:
Thank you. The pediatrician we saw did a Thyroid test(only at my request) and she said it was in normal range. I may have the GYN test again next time they do blood work since they will be testing for glucose levels, and probably cholesterol too...might as well keep track of all of them. The high cholesterol, diabetes, and High blood pressure risks that PCOS increases are not something she needed since we have a very strong family history of that already. I do feel like getting it under control early is probably going to be her best chance for any plans in the future. So sorry for you loss. I can't imagine the roller coaster you are on, but pray that you will be blessed with a healthy full term pregnancy soon. My daughter finished the 10 days of progesterone Wednesday and started spotting today, so, Sunday we start BCP. Your input is so valuable since you have the experience of having started with the diagnosis about the same age. Thank you again!
 
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cheeseheadmom replied to MSUphysicsFRIB's response:
She started her period 8/09 and had it every 6-8 weeks until July of 2010, then it stopped..that is the concern. I appreciate your input about the adjustments you made to the paleo diet, I think that would be something we would likely do also for the same reasons--just that occasional slice of homemade bread or something like that:)
 
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hgreenwood7058 replied to cheeseheadmom's response:
Thank you for the good wishes. I am on a roller coaster with it right now but hopefully it will get better. Thats good that she is spotting. BCP will hopefully make things go easier. Good luck and keep us posted and post anytime for advice. These boards are a good source for comfort and reassurance.
 
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MSUphysicsFRIB replied to cheeseheadmom's response:
Is everyone else in the family going on the Paleo diet? If not, it might help if you hide starchy/sugary foods that could tempt your daughter. When I first tried the Paleo Diet, I was home from college for the summer. I asked my parents if they could keep any tempting bread, cereal, baked goods, and chocolate (I can resist other candy easily, but not chocolate!) in their bedroom, so that it didn't stare me in the face whenever I went to the kitchen to prepare food. My mom was really annoyed with me at first, but she obliged, and I'm very thankful for that. It made sticking to the Paleo Diet a lot easier--especially during the first couple of weeks, which were the hardest!
 
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MSUphysicsFRIB replied to cheeseheadmom's response:
By the way, I should note that although I lost weight when I started the Paleo diet, I went on it mainly to see if I could get my skin to clear up. I had already been on Accutane twice, and although it "cured" my cystic acne, my face was blanketed in comedones (whiteheads and blackheads) whenever I stopped the Accutane. The Paleo diet resulted in ultra-smooth skin (though I had to stick with it for a few months before I saw results). For this reason, I'm convinced that the Paleo Diet is great for lowering insulin levels and helping people with PCOS.

However, staying on the strict Paleo Diet for years would be highly challenging. Once my skin was clear, I started to incorporate 1-2 servings of grains per day in my diet (in place of some of the fruit, so my diet is still relatively low carb, though not "super-low" carb). I found a book called "The New Glucose Revolution: Guide to Living Well with PCOS," which explains which carbs are low-glycemic and why. For example, whole wheat yeast-raised bread is high-glycemic because it is made from finely ground flour, and it "gelatinizes" quickly once it hits the stomach (stick a piece in a glass of water and watch how quickly it swells up). However, "grainy"-textured sour dough bread is low-glycemic because it contains very coarsely-ground gains, which take longer to "gelatinize" in the gut (stick a wheat berry in a glass of water and watch how long it takes to swell!), and also because sour dough bread is acidic, and acid lowers the glycemic index of food.

Of course, fruit is low-glycemic and contains far more vitamins, antioxidants, and soluble fiber than even the "best" whole grain, so it is a superior carb option.
 
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jlane13 responded:
This makes me very happy to read because i'm a 21 year old and i was diagnosed also when i was 14, but when i told my parents they didn't really seem to care. i didn't get treated for about 2 1/2 years after b/c i was sick of the symptoms, but enough damage was done. its hard even now for me to deal with alone, so your daughter is very lucky that she has someone that is concerned.
i went through severe family problems b/c of my mood swings and plain frustration. i still hold resentment against my parents for not helping. i used birth control from age 16-19 and i've been off it for 3 years. i continued getting irregular period(once every 4-12 months) until 6 months ago i started getting it every 2 months. high school is a judgmental time in every girl's life and PCOS can make that a living hell. diet, exercise and knowing that someone understands what you're going through is really important.


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