Saturday, December 3, 2011

Precocious Puberty? What?


This may not be of any interest to you whatsoever... it wouldn't have been to me if someone had posted it a few years ago - but I think it is important for people to know that it does in fact exist. Some of you already know - but others may not and it could happen to your children or future children so I'm writing in in hopes to help someone out.

My daughter, at 3 years old was diagnosed with precocious puberty.
This means - early onset of pubertal development...
It can be caused by the pituitary gland simply working much before it should.
Other causes are brain tumor, ovarian cysts, or exposure to estrogen via topical ointments or if a child got hold of birth control pills, etc.

I have not divulged the details of her story to very many.. but here we go..

My little girl was chunky when she was a baby ... always off the charts for her height and weight (but proportionate)..

The summer I realized something was wrong I noticed that when she would play outside and come in - she had smelly underarms. Not like... sweaty kid smell - like adult smell. Worse than I would smell if I forgot deodorant for a day!
I didn't think this was normal. Soon after, I started noticing other developments which would be normal in a much older child - but certainly not a 3 year old, so I made her a doctor's appointment.

I first found out about precocious puberty at the appointment. I was told the possible causes - and told that if we did not find out what her particular cause was - she could start menstruation cycles as early as 4 years old. She was scheduled for an ultra-sound, an MRI, bloodwork, and an x-ray to determine her bone age due to her already starting her growth spurt.

She did great for the ultra-sound other than a little discomfort because she had to have a full bladder. The MRI she did really good - I was SO proud of her. For those who have not had an MRI - it involves laying inside a claustrophobic "tunnel" in a huge machine that makes SUPER loud noises and you have to lay completely still as it takes pictures of your brain. At one point she said - "Mommy, I'm getting a little afraid in here." But she did wonderful.

The xray was obviously no big deal either.

Waiting to find out if your 3 year old has a brain tumor isn't fun. Especially considering my mom and grandmother both had one. It was normal, as was the ultrasound.

Her bone age, according to her x-rays, was 7 years, 10 months. This means her bones at the age of 3, were the size of and formed as those of a girl 7 years and 10 months old should be.

We were sent to an endocrinologist in February 2009 at the Joslin Center in Syracuse - who then referred us to a Pediatric Surgeon. There are 2 types of treatment for CPP (Central Precocious Puberty - meaning that there is no other explanation besides her brain is telling her much to early to develop)

Treatment option #1 involves a monthly injection which is very painful. This injects medicine which counteracts the hormones being secreted by the brain to slow or suppress the development.

Treatment option #2 is an implant. This works much the same way but is time released and full of enough counteracting hormone to last for approximately 12 months.

After discussing and researching both options, we decided to opt for the Supprelin Implant.It is about 1 centimeter long and slightly smaller than the diameter of one of those small glow sticks you get at the fair.

On May 4th, 2009 we went to Syracuse for her procedure. She was put under (was really hard for me to watch!) and the procedure took about 15 - 20 minutes. She came out grumpy and said her arm hurt - but by the time we were part way home she wanted McDonald's and didn't say anything more.

That following Tuesday, we went back for follow-up with Dr. Sills. We went over the results from her bloodwork in February. The luteinizing hormone, which is a pubertal hormone, was detected as 2.3. This hormone should be undetectable in a 3 year old. I asked the doctor at what age 2.3 would be a normal level and she said it would be normal in a 10-11 year old female. They drew some more blood so that we can be sure that the implant is functioning correctly. Lena had no problem with them drawing blood she said "ouch!" and that was it.

This will be an annual thing until she is old enough to continue developing where she left off. She is now 6 and is on her 3rd one. Each time it has gone smoothly with no issues and the implant has done it's job. We are anticipating that this will be her last implant.

I am handling it all okay. I am thankful for the Upstate Medical Team. Sometimes it is hard to explain to people and seems almost a little embarrassing to talk about - but in reality - it could happen to any one of your children and I am hoping that my blog will help someone else and let them know they aren't alone, or maybe you have a friend with a child who has some of these issues. They need to be taken care of. Not only would it be a serious social issue to be the the only Kindergartner wearing a bra - it can have health consequences as well as children who are left untreated can end up being of extremely short stature due to growing so quickly as a young child.

I thank God she is as sociable and outgoing as she is. She won't tolerate being picked on as the kid who is 6 inches taller than the average kid her age... (she is now 6 and is 70lbs and 48in tall)...she also has lost many of her baby teeth already and recently got braces because her front teeth came in very crooked! She is not shy or embarrassed about her implant - she will happily show you the scar. (At one point she thought it was going to make her stay 3 forever. :-))

If someone you know has any type of similar issues going on with their child - feel free to share this. It's nice to find someone who's in the same boat.

42 comments:

  1. just reading this has made me well up x i as a child went through this traumatic experience myself , I am now 17 and would love to chat to you if you have any concerns for the future , feel free to email me , all i can say is ensure she is always supported throught this as i myslef now have a great issue with my body image , i have a very petite fram and extrememly large breasts which i hate with a passion . i feel it has had an adverse effect on my life now and just ho[pe your little girl doesnt end up with such resentment about her body when she reaches my age

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    1. I replied a long while back to your post but I posted it as a separate comment instead of a reply so you might not have gotten it... I would love to talk with you. You can email me at kdkx16@aol.com anytime.

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  2. I have an 8 yr old daughter and was just told today that her bone age is 13. We have to decide whether to do the injections or the implant. I am curious what made you choose the implant vs. the injections. She has had pubic hair since she was 5 and breasts as well. She has now developed underarm hair and a lot more pubic hair. We are not far from you, in the Binghamton, NY area...just curious as to what made you pick the road you took...

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    1. I would have to say that it was mainly because of what I read about how painful the injections are for most of the girls. I figured that having one implant a year that she was put under anesthesia for was hopefully less traumatizing in the long run than forcing her to have a painful injection every month or every few months. Like I said as soon as she comes out of the recovery room it's like nothing ever happened she doesn't complain a bit. The implant completely reversed the breast development and hair development. She does still have to wear deodorant. Good luck to you and your daughter with whatever route you decide to take. Also - what a small world! I am only 15 minutes from Binghamton.

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  3. I have been searching everywhere and joining everything i can regards to CPP.....Discovering your blog and reading it has me in tears as I find it so difficult to find other parents who are also dealing with their precious children and this condition!
    My baby girl was diagnosed about 3 months ago.....she is now 10months and has had 1 Lupron injection with the second one due in 5days time....already anxiousness is creeping in and I'm dreading going to the hospital!
    I live in Cape Town, South Africa and there seems to be very little support groups out here....my goal for this year is to start one in our community.
    Thank you so very much for sharing the path you and your daughter has been walking....you are so right : very little is known about this condition and how serious the implications can be :(
    I'll follow your writings and if you have any news/advice/want to chat, my e-mail address is snj.oosthuizen@gmail.com
    Wishing you and your daughter and family all the best....

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    1. She is only 10 months?! Wow. I am glad that you found my post and I think it is nice when you know someone else is going through the same things as you are as a parent. How did they detect that so early in her? Good luck with forming your support group, I think that is a great idea! I am nervous because her appointment is coming up soon and we are considering discontinuing the implant and allowing her to move along now. She will be 7 this year, and I worry about long term complications from several years of having the implant. We will see what the doctor says. I also feel that she is getting to the age where when the doctor checks her over physically (even though it is a female doctor) I feel like that situation is uncomfortable to her. Thank you for commenting on this post and I just may email you sometime. If you'd like to email me - kdkx16@aol.com. Good luck with the upcoming appointment.

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  4. Hi, my name is Nicole. My daughter was diagnosed at age 3. They said then that she had bone age of a 5 1/2 year old. But that was the only testing they choose to preform. All they said to us was just keep an eye out for breast development and underarm hair. If she develops either of those then we should be concerned. Well, she just turned 7, and a few weeks prior, I noticed 1 underarm hair. Now I am very concerned!

    We were not given hormone therapy as an option, there were no MRI testing done, etc. I am very worried because I don't want my little girl to grown up any faster than she necessary. Besides what if she menstruates or her growth becomes stunted!

    I am just shocked that they were so non-chalant about the whole thing. And this was at Children's Hospital in Wisconsin. It is supposed to be one of the top children's hospitals in the country. We are seeing a new doc this coming week. So, I'm feeling hopeful. But I'm worried I waited too long. What do you think? Do you have any advice? Would you mind if I emailed you?

    Thanks for reading!
    Nicole
    mrshotlink72@gmail.com

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    1. Try not to worry too much, I know it's hard. Wait and see what the new doctor thinks. It will probably be easier to keep in touch through email, you can email me at kdkx16@aol.com and tell me more of your story (how you realized she was developing, etc. was it just her height?) and I'll get back to you soon. Thanks!

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    2. Hi Nicole,
      My daughter was dx when she was 5..her bone age is 2 to 3 years advance. She is now 7.5 almost 8..I live in Wisconsin too..I do have to agree they are very non-chalant. I'm curious who your new doc. is and another parent going through this too. My email is secret_vicki@yahoo.com
      Thank you so much
      Vicki

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  5. I am glad I found this. My daughter is 7, she will be 8 next month. She has been getting the Lupron injections for about 4 months, but I am considering the implant. I hesitate on the implant because she will have to be put under for it as there is no way she will be still. She has had other surgeries, and everytime, I hate putting her under. She really does not seem bothered by the shots. The only pro I have heard regarding Lupron v. Supprelin, other than convenience of not needing monthly shots, is that Supprelin is a more constant dose. I was wondering if that might alleviate the acne she gets just prior and following the injection. Any experience with this? Also, how is her behavior. I have read some accounts that the Supprelin made the mood swings worse, and other accounts that behavior improved on the Supprelin. (Not a big issue so far, but I am curious).

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    1. We've never had any acne troubles with her so far. I can't really be much help in comparing the two since she has never had the injection, but the Supprelin has been great for her. She actually sees her endocrinologist next Wednesday to discuss whether we are going to have another put in or have it removed for good. She is only turning 7 in August but I of course am a medication worrywart and the long term effects or effects that happen years down the road with any medicines concern me. I am okay with her being a little early on things but 3 was MUCH too early. It IS hard to put her under, I hate that part too but Upstate Medical is really nice about everything they let me go in with her while they are putting her out and then the procedure is literally only about 20 minutes and I'm in the recovery room with her. As far as her behavior goes I think it has helped with her mood swings UNTIL about 3-4 weeks before she is to have her new implant every year she seems to start getting really moody. The doctor said that the implant will actually last a little more than a year so she doesn't think it is related to the implant "running out" of medicine - but she also said I am not the first to say that this happens so I think there is some science to it! Hope this helps. Thanks for visiting!

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  6. My 14 month old son was just diagnosed with familial male-limited precocious puberty. His testosterone level should be under 9 and it is 175. His testes are enlarged and he is a "big boy." He has lots of aggression from having lots of testosterone in a tiny 14 month old body. We know the cause of his precocious puberty. A defected gene that I, the mother, am a carrier of. The females in my family don't have the effects of it, we just pass it to our sons. They have a 50% chance to get it. I have 4 sons and Jude is my 4th and the only one to get it. This form of PP is extremely rare. He will take 2 oral drugs up until his bone age is 10-12 years which you know can be very early and then he'll go on the Lupron shots. The implants weren't even mentioned as an option. I wonder if it is only a female option? He will be going on Spironolactone and Arimidex. Normally starting at 18 months. He may start earlier if the aggression gets too much for daycare will it causes a danger to other kids or himself. He's a very happy guy, just has his fits of rage when you take him away from some activities(like climbing). Or if he hasn't had enough sleep, he can have lots of melt downs.

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    1. Wow Kathi, I hadn't heard of this type before. Very interesting. I am not sure whether the implant is a female-only option - but I would think that it would be similar medication to the Lupron? Maybe that is wrong assumption. Are there other males in your family with this same type of PP? I know you said none of your other sons but how about brothers or nephews? I hope that the medications they put him on take care of it and hopefully none of our kids will experience any long-term negative effects from PP. Good luck to you and your son!

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  7. Both my brothers had it but that was back in the 60's and early 70's so the treatment back there wasn't any good. My nephew finished treatment and it was successful but his growth wasn't that great because he had asthma meds which stunted his growth. My cousin had it back when my brothers did and he has a son who is grown who is 5'10 inches and just had a late in life son that is 17 months that was just diagnosed last month. Both our "late in life" sons are on new meds than what our other relatives were on so we don't know how our new little ones will react to these meds. The Spironolactone was used on my nephew and my cousin's son but the Lupron and Arimidex is a newer drug for our toddler/infants. Before my brothers, our family called our older relatives "big littles." Big kids/little men. In fact, my brothers had depo provera shots back in the late 60's before it was used as birth control. We never heard of it back then as birth control. Funny! I learned that from a book that has my brothers and my cousin's pictures in it. They are all under 5'4" tall. They were all not treated until 5 years old so way too late to preserve much height.

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    1. Very interesting! Thank you for sharing your story and I am interested in hearing how the meds work for him, so come back and update sometime?

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  8. I will let you know how it goes.

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  9. Hi, thank you for sharing. Our three year old daughter has been diagnosed with CPP (just awaiting the MRI results) and need to decide what treatment we are going to go with. I was wondering if you had any idea on the cost of Lupron and Supprelin? I am a little worried about what this is going to do to our monthly budget since we are looking at needing treatment for years to come.

    Thanks,

    C

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    1. Hi C,
      Where we live, our income is poverty level so we are covered by an insurance program called Family Health Plus. This covers her treatment, so I cannot tell you any definite amounts. I have never looked into the cost of the shots, but I do know that the insurance company's prescription drug company told me last year that they were covering about $16,000 for the cost of the implant and that cost did not include the procedure itself or anesthesia. I do not know where you are from but unless you make a lot of money - I would check to see if you have any programs in your area that might help you with the costs. They often have programs that will help folks out - sometimes even if you already have your own insurance through your employer.

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  10. Hello,
    My 3 year old was just duagnosed with CCP. She had larger breasts since birth and the doctors attributed this to my hormones in the womb, then soy formula. The breasts didn't go away so at age 2 i took her to see a pediatric endo. They only did an x ray of the wrist that showed the bone age of 3. Told me to come back in a year. When she turned 3 the x ray showed the age of 3.5 years. The breasts did not increase in size but they did not go away either. A blood work showed estradiol level of 2 so a Lupron stimulation test was ordered. The estradiol was 25! Which confirmed CCP. Now the doctor wants to do an ultrasound of the ovaries and see what that shows. She has no other symptoms. I am waiting for the ultrasound to be done and for the consult of what to do next. I am very worried and afraid if the cause is something serious. All this news came today...
    Can you share your daughter's side effects to the injections/implant? Thank you.

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    1. Hi Val-
      My daughter has never had the injections. She is on her 3rd (and final) Supprelin and other than having some moodiness here and there right before she would have them switched she has had no noticeable side effects at all and the implant has lowered the hormone level as it should and also made the breast growth stop and actually reverse. Good luck with the rest of the tests and I hope it's nothing serious and just plain old CPP. Thanks for sharing your story!

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    2. Hello Krystal,
      If my math serves me right, your daughter was 3 when she was diagnosed, had 3 rounds of implants so she is about 6-7 years old now. Why stop now with implants? Shouldn't kids be on therapy until the age when they would enter puberty anyway (10-ish?).
      Thanks.

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    3. Your math is correct. :) Check out the update from April. http://krystalrowe.blogspot.com/2012_04_01_archive.html

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  11. My daughter just got diagnosed last week with early puberty. she is 7. We go for an ultra sound on Friday then hopefully we'll start her treatment soon. We chose the implant. I was wondering how did you talk to your daughter about what's going on with her body and how did you prepare her for the implant? I'm worried how she'll take the implant. thanks for writing your blog.

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    1. My daughter has an "old soul"... She has always been like a mini-adult so it really wasn't that difficult for us to talk to her. I simply told her that her body was growing a little faster than it was supposed to and it was trying to turn into a woman's body and that it wasn't supposed to do that yet. I explained to her that she had to have the implant done in order to stop this. Even at 3 she could understand that enough. She is a child who is has always been well beyond her years. Once as a joke I made reference to Clifford the Big Red Dog and told her that if she didn't have her implant she wouldn't stop growing and she'd be like Clifford and she'd have to live outside. :) (She knew I was kidding with her) ... so because she's always been ahead of herself it really wasn't an issue when we talked about it. They are not giving your daughter an MRI?

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    2. My daughter is the sme way. acts and talks older than what she is. No MRI. they did an x-ray and blood work last week & now the ultra sound. My daughter seems to understand whats going on. She is embarrassed by it though & doesn't want anybody knowing. so I'm trying to help her with that issue. We went & got her a body book that talks about everything. I think I'm more worried about the implant then she is. Since we don't know what to expect with it.

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  12. Hi, my daughter just turned 7 last week. I'm writing this from a hotel room on the eve of her first endrocronaligist appt. when she was 6 & half we noticed her underarms had "adult b o". We thought it was because of going to school all day then to Skateing right after. We didn't think any thing of it. This summer one month before she turned 7 she had a sore spot from her under rubbing. It was on her iner thigh. I then noticed the very start of pubic hair. I had to leave the room to go cry! I couldn't believe what I was seeing. I composed my self & called my husband. She saw the doctor the next day. Now here I sit think about what will happen tomorrow . I am wondering where are the implant is inserted? Thank you I do feel a little better after reading your stories .

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    1. Hi, good luck with everything and try not to worry too much. I hope the endocrinologist appointment goes well for her. I should have specified in earlier posts - The Supprelin is implanted into the muscle of the left or right arm (usually the non-dominant arm). My daughter has it in her upper inner left arm. She has about a 3/4in scar there because of having it in and out three times but the procedure itself is very short and pretty simple. My daughter within 2-3 hours of surgery never says another word about it being sore or bothering her at all. I hope if they go this route with your daughter everything goes smoothly and it is effective treatment. Thanks for sharing your story and let us know how it goes today!

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  13. My daughter is 3 and we go in for another doctors appt tomorrow. She has bad body odor, pubic hair, leg hair, and mood swings up the wazoo - worse than my teenage sister. Im an organic farmer too, and the only thing that we buy at the store is milk and meat. unfortunately that is where all the hormones are coming from so I feel bad. Im still in shock and not sure what to do.

    www.mylittleacres.com

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  14. Thank God I found your blog! I just left the endocrinologist with my 6 1/2 little girl. Last week started with her pediatrician doing a hand x-ray fast forward to getting blood work done today and next talking about treatment options. The doctor praised me for noticing the signs and getting her in so early. Her bone age is not that bad but her breast buds and starting to develop a little. She has always been taller than her peers because my husband is 6'7. Saying all of that I can't help but wonder as a Mom if there is anything differently that I could have done to prevent this. My little girl was a trooper getting blood drawn today but did not enjoy it. Now realizing that she maybe getting regular injections is disheartening. As a Christian I tell myself it could always be worse and that there are others going through far more severe situations but I can't help it. Anyway I'm rambling, thank you for creating a forum for parents to meet others in our situation. You give me hope :)

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    1. Thank you so much for stopping by! Good luck to you and your daughter I hope that everything goes smoothly and you find a treatment option that is best for all of you. :)

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  15. My daughter had her first implant last November. I came across your blog when I started searching about mood swings right before needing another implant. She is most certainly starting these and its heartbreaking. It was really good to see I wasnt imagining it that someone elses daughter is showing that same behavior. Now I cant wait ro get her scheduled and have the new one inserted. Hopefully then we'll get back to normal.

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    1. My daughter seemed to always kick the mood swings after she got her next implant, she has had 3. She's running out of medicine now and we're probably not going to do another one so she's SOO moody and emotional. Hopefully your daughter will get back to normal as soon as she gets it. Thanks for visiting my blog page!

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  16. Thank goodness that i found all these stories and feel that things will be ok.

    My Name is Lissette

    My daughter is 6, and ive been taking her to the doctor for 3 years asking if the signs i was seeing was normal. The doctor reassured me that it was all fine.
    When my little girl was 3 i noticed body odor and her breasts began to develop.
    My doctor said that sometimes those things happen and not to worry.
    However, over the summer July 2012 i noticed pubic hair.
    She had had many test done and confirmed precocious puberty.
    I decided in the suprellin implant just because it seems less painful in the long run.
    My daughters bone age is close to 11

    ****My question is how has the growth of your little girls been after the implant?
    im just concerned that she will be really short considering how advanced her bone age is. And the doctor is no help -they aren't really giving me straight answers which is really stressing me out

    thank you for your help

    my email : LR_advertising@yahoo.com

    any followups or advice or anything please share with me.
    I really appreciate it

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  17. My daughter started showing signs of puberty at six months of age, pubic hair, breast development, ect. I told her dr about it and he acted like I was a idiot for even suggesting that she could be experiencing puberty at 6 months old!... Against my gut, I ignored it an let it go until she was 17 months old. During the time, her pubic hair got worse, but I always just thought it was bc she was biracial and it was just darker then non biracial babies. I finally had enough when I went to change her diaper and seen blood, not just any blood, dark blood like menses! I freaked when I took her to her dr, I had him apologizing every which way to Sunday for "overlooking" her condition! After the MRI we found out her cpp is caused by a tumor in the tubular space in her putuitary gland but there is no medical reason to remove it, so we thought. We put her on lupron she will be receiving her fourth shot but it isn't working all it has don was stop her menses. She is still growing and developing out of control. Her endo wants to push for the implant, but I am scared it won't work either and we are wasting her precious time. She has developed so much I am scared to put her in school bc of the fear of her being bullied. I am very concerned that her tumor will have to be removed in order for her treatments to start working for her, and I am not getting any answers from her endo on why she is still growing, she just said she is Extremly concerned she is still growing!...

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    1. om my goodness!... Thank you SO much for sharing your story here. I hope and pray that either the injections start to work for her, or the tumor can be safely removed from her. I am sorry you are going through this. Good luck to you and keep in touch.

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  18. If any of you lovely blog followers are interested in sharing your story on a television show here is an email I received.

    "My next shoot is in Memphis, TN and Little Rock AK. If you come across any moms with girls who have this condition in (or near) either of those cities - please let them know we are looking for someone to talk to us about this on TV. If they're interested, feel free to give them my e-mail and they can contact me that way. Or if you want to pass along their e-mail, I'll contact them.

    I'm scheduled to go to those two cities at the end of February 2013 so we have a little time to look for someone and set something up. If you're up for it, it would be so helpful if you could post this on your blog to see if anyone from either of those cities is interested.

    Thanks so much!

    Take care,

    Stacie O. Johnson
    (407) 496-0020"

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  19. Hi Krystal, I don't know if you still keep up with your blog. If you do, I'd love to chat with you about your situation. My daughter is 6, she's had PP since she was 3 (well, they diagnosed her at that age, I believe it started earlier than that) and is scheduled for surgery next month. If you'd like to chat, please email me anytime! -Kim. Kimjones129@hotmail.com

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  20. Hello.
    I am very worried.My 3.5 year old girl had a bone age test & it came back showing that of a 5+ year old.Waiting on Blood work now.What is normal & what's not?.
    Tegan

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  21. thank you for sharing your story. I had early puberty that was provoke by ovarian cysts. and now I have a daughter that was diagnose when she was a year and seven months, I opted for the supprelin implant because she is afraid of needles, she is now six. and the endo is already talking of taking her off the medication, besides one of the side effects is weight gain and she is on the top of the chart for that.

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  22. My daughter just had her third Supprelin LA implanted 3 weeks ago, and has developed a terrible rash and swelling from the bandage. Has anyone else experienced this? I was told there was a recall in Mid January but can't get any information beyond that. It was definitely the bandage and not the medicine itself, since the rash perfectly covered the full area that the bandage was covering. Then the rash spread to her face, ears, and finally torso. She is still recovering. How could this have happened?

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  23. So my daughter was just diagnosed with this. She is 8 now. Started developing breast buds at 7, but underarm hair and BO at 6. Her bone she X-rays are normal for her age and she is already 4'6". My question is... should I let it go and just let her develop early and deal with the social aspect or risk it and try the injections/implant for a year?

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Be nice and keep it clean... :)