Friday, March 14, 2008

Little A

A couple of weeks ago, at her yearly medical checkup, my sweet little A, barely 8, was given a scary diagnosis, one that we've suspected for a while, but one which her pediatricians over the last two years have said, "Oh, that's perfectly normal these days."

Blogger is not allowing me to link directly lately. This is the link: http://www.kidshealth.org/parent/medical/sexual/precocious.html (okay, that doesn't appear to be working, either, but it's the correct address)

From the above link:

" What Are the Signs of Precocious Puberty?

In girls, the telltale signs of precocious puberty include any of the following before 7 or 8 years of age:
breast development
pubic or underarm hair development
rapid height growth - a growth "spurt"
onset of menstruation
acne
"mature" body odor "

A has the first three symptoms, has since the age of 6. Six! My gosh, I was well into my teens before I...... well, actually, I never had boobs until I gained weight the last few years, same with hips. I wanted boobs. Now I just want my shirts to fit again.

A's okay with the boobs. She likes them just fine. The hair? Notsomuch. Actually, it freaks her out. Totally. (I don't much blame her.)

Now, if those symptoms were the only problems Precocious Puberty caused, well, having a period at age 6-8 can be traumatic (hell, I never got used to it and was absolutely delighted when menopause finally, finally became an official diagnosis for me), but a child who's been well-prepared by her mom can cope.

But. There are problems.

(Again from the above website) "How Does Precocious Puberty Affect a Child?

When puberty ends, growth in height stops. Because their skeletons mature and bone growth stops at an earlier age than normal, kids with precocious puberty usually don't achieve their full adult height potential. Their early growth spurt may make them initially tall when compared with their peers, but they may stop growing too soon and end up at a shorter height than they would have otherwise."

A has just gone through a very rapid growth spurt. The pediatrician ordered a hand xray, which is the way it's determined if the bones have started to fuse, which means that growth will soon stop. Also, it determines the child's "bone age". A's bone age is 11-12. She's barely 8.

A's height is currently 4'6", which is at the 95th percentile for girls. Sounds good, huh? But what if she only grows a few more inches?

I'm aware that this can sound really superficial and also cruel to those who aren't tall anyway. But I'm going to use that word--"but"--we're a tall family. A's mom is 5'7", her dad is 5'10", I'm 5'9", my son is 6'5". My shortest sister is 5'7" and my two nieces are almost 6'. Mom is--or was, before she started shrinking a little--5'9", Dad is 6'. A has always expected, with good reason, to be tall (although it really disappointed her that she'd be too tall to be a good gymnast). She's always been the tallest or close to the tallest child in her class. She's used to that.

So. A saw a pediatric endocrinologist this week. He looked at her hand xray and immediately said, "She doesn't have much time", meaning that she can start her period any minute now. Her bones are fusing. He said that her pediatrician should have referred her two years ago. Oh, J tried. She told the peds, each visit, of her concerns and asked them to check things out. Nope, it's "totally normal these days". Those two pediatricians may have cost A a good 7-10 inches of height. That's totally unacceptable. What else have they overlooked when a mom insisted there was a problem?

The ped endo ordered more blood work for the insurance company, not because he needed it for a diagnosis, he said, but because the insurance company would insist upon having it before they'd consider paying for the treatment, which is $30,000 a year. (Note to former peds: You owe A's family approximately $60,000. Thank you for your attention.) Now, the ped endo said A might have a couple of weeks before it's too late to start the treatment. It's going to take another week for the bloodwork to reach the insurance company, then, it'll be 2-3 weeks before their decision, then, if it's approved, the surgery for the implant has to be scheduled. It could be months before all of this is accomplished. Remember up there: "She doesn't have much time?"

Treatment? Again--same website: "The currently approved hormone treatment is with drugs called LHRH analogs - synthetic hormones that block the body's production of the sex hormones that are causing the early puberty. Dramatic results are usually seen within a year of starting treatment with an LHRH analog, which is generally safe and usually causes no side effects in children. In girls, breast size may decrease - or at least there will be no further development. Growth in height will also slow down to a rate expected for children before puberty. A child's behavior usually becomes more age appropriate as well."

And this treatment is $30,000 a year, one implant good for a year, usually done until the girl reaches 10 or 11. The implant was just given FDA approval (yeah, I know, that's a comfort) less than two years ago; before that, the drug was given in injections every 28 days. That works well with most kids. (Catch the sarcasm there?)

If A receives this treatment, she will possibly reach 5'6", acceptable given her family history. If not, at most, she'll reach 5'. Full adult height at age 8. When A heard that, she said, "I want the implant," and J agreed.

Maybe I've been overly hysterical about this. It's hard to tell; I'm too close to A to be objective. But it's a pretty scary thing for a little girl and her grandmother who didn't have her first period till she was 13.5. And is 5'9" tall. And doesn't have to shop in the little girl's section at age 55.

It's really been difficult finding blog entries dealing with Precocious Puberty. It's my hope that someone (a mother or grandmother or sister) will Google PP and find this blog and start writing about it themselves. We need personal perspectives from those who have or are going through it.

Then there's that whole gymnast thing.....

P.S. The ped endo looked at B2, who the regular ped said is the size of a 6-8 year old, asked how old he is; when he heard "4", said that he'll be testing him next.

10 comments:

Trillian said...

not to add fuel to your panic fire, but Precocious Puberty is a symptom of Late Onset Congenital Adrenal Hyperplasia, which I have. Has the Ped endo made any mention of that? I didn't develop symptoms until my teens, and I didn't get treated for it until recently, so i don't have any experience with how it will effect someone as young as A. this site may have some better info

Trillian said...

just so you know, that site is geared more towards infant CAH, which is far more scary than LOCAH

Trillian said...

this site is a little better

Antevasin said...

Awwww...I'm so sorry Rita. I wish I knew more, but all I can say is I had two cousins with PP. By the time it was discovered it was too late for them, so Paige is only
4'9" and Paul only reached 5'. We are a pretty short clan anyway (I'm only 5'4"), but I can tell you both of my cousins went on to lead very happy productive lives. They did try the growth hormones, but it didn't help either one of them. So, all I can say is I hope A gets to have her implant soon!!! Hugs dear friend!!!!

Leetie said...

Rita,

My take on this comes from my line of work, so take it FWIW and with a grain of salt. You need to feed those kids organic foods. Limit milk and cheese unless you're sure it's organic.

Watch out for plastic. Kids wind up eating tons of it via water bottles, fast foods that are nuked in plastic, you name it. Canned foods too -- cans are lined with plastic. Lotions. They all contain plastics and other chemicals that disrupt the endocrine system. Estrogen-like compounds that cause early puberty. Look up endocrine disruptors for a whole nightmare-full of reading.

I am wholly convinced that our bodies are suffering tremendously due to all of the pesticides and other toxins we eat on a daily basis. And children's bodies are getting hit the hardest.

I'm so sorry to hear that A is going through this. I have seen some acne on my A's face lately and it's killing me. It can't hurt to go all organic. All the best to you.

rita said...

Sorry it's taken me so long to answer you guys. I appreciate all of your thoughts tremendously.

Trillian, I'll check the sites you sent and have sent them to J. She'll be sure to mention it to her ped endo.

Deedee, my friend, thank you. Of course people who are very short can be as happy as those of us who are so tall we can't find pants that reach our ankles! I guess the whole thing is that it's such a shock to find out at 8 that you're going to be just a few inches taller when you finish growing, unlike those in my family who grew 4" a year when we hit puberty! I wonder what's the difference there? My mom said she grew 8" in the two years after she started her period.

And Leetie, thank you so much for your input. I knew you'd have some good advice. I agree, organic and without plastic is the way to go. Facial creams and such seem so innocent until we find out what crap they contain! J is usually very careful to buy things that aren't tested on animals, but there are other things to watch out for. She's started buying organic milk and letting the kids drink less. One big problem I see is that they're vegetarian (and I'm not knocking that; most of the younger generations of my family are veggies) and they eat a LOT of soy products. It's going to be a challenge to get enough protein without it, but it needs to be done.

Thank you all!!!

Trillian said...

Does the doc know about all the soy she eats? soy can suppress thyroid function

rita said...

Yes, she told the doc about the soy, and he said that's not proven. Uh huh.

LabSPecimen said...

I'm going to share this with The Wench. One of our grandkids is just 10, but showing some of these signs. Thanks for sharing this with us.

LabSpecimen said...

Ok, maybe 10 is an ok age for what she's going through. Although... I could be wrong on her age, too. So I'm still sharing it!