Growth Hormones to keep child small

Giving your child meds or having surgery to keep them small, also known as growth attenuation.

This can be a controversial topic, please don't bash our decisions. We have always had our daughters best interests in mind throughout the process. So here goes.

I first heard about the concept of keeping a child smalI when I read about Ashley in Oregon also known as the "pillow angel". Her parents fought for and succeeded at having their daughter have a complete hysteroctomy and breast buds removed. There were several reasons for this: they wanted to keep her small to continue caring for her and she had an extensive family history of cancer along with other reasons. You can read more about Ashley here http://www.pillowangel.org/

I did not know what the options were in regards to keeping a child small, but I knew that it was going to get harder both for me and her in the future, so I decided to start meeting with Dr.'s. I met with a developmental pediatrician who referred me to a pediatric OB (obstestrician) who referred me to a pediatric endocrinologist.  Ellie was about 7 and a half when we started meeting with these Dr.'s.

During these Dr. appointments I had only ever heard of Ashley having surgery to achieve the desired outcome, I did not know there were any other option, They warned me that these surgeries were controversial for a child and if we wanted surgery we would have to go before a hospital ethics committee to argue our case and prove why we wanted the procedure done. I think the main thing everyone was concerned about was the safety and well-being of our daughter. We were also told that insurance may not cover it and if they didn't approve the procedures we may have to travel out of state to have the surgeries done and pay out of pocket.

We were not sure we wanted to do the procedure, but we wanted to find out what our options were and what the repercussions were. 

Endocrinology presented a different option. She said we could give her hormones. It was estrogen, basically a low dose birth control pill. By giving her hormones it tricks the body into thinking it is going through puberty. When you go through puberty your growth plates fuse and you don't get any larger. So to paraphrase, we would be sending her into puberty early so that her growth plates would fuse so that she wouldn't get any larger.  Girls growth plates normally fuse around age 14. Boys are later than that.

We were told that she might develop breasts, but they would may be elongated instead of round and full.  She had pubic hair since she was about 4 years old. (Kids with disabilities and on lots of meds often do).

With the estrogen she would also probably start having periods. She may be able to stop the estrogen after her growth plates were fused, but she might also need to continue it to keep her estrogen levels if she didn't start manufacturing estrogen on her own. We might also need to start her on another med, progesterone. You know how a month supply of birth control pills has 3 weeks of 1 color pill and 1 week of a different color? The 3 weeks is estrogen and the 1 week is progesterone. The progesterone is when you have your period. The endocrinologist said if she started spotting that we would need to start her on progesterone to make her have a period. It is dangerous for it to continue to build up without sloughing off occasionally.

With the estrogen there would not be any hospital ethics committee and no problems with insurance paying for it. The endocrinologist had only done this with 1 or 2 other people before. She said she really wasn't sure what the long-term medical/social/emotional effects of doing this were.

Because of all the media hype regarding Ashley the endocrinologist made it very clear from the start that this was controversial and if the press approached her she would tell them that it was COMPLETELY our choice as parents and she did not sway us one way or the other. She said this several times. She was willing to help us, but she it was not choosing it, we were as her parents.

We thought about it for about a year, and then decided that starting the estrogen was in the best interest of Ellie and our family. We wanted to go ahead with the estrogen only and not do any surgeries. We started it when she was about 9 and a half. It took a little over a year for her growth plates to fully fuse.

We personally decided against having any surgeries for several reasons: one of the results of having a hysterectomy is a lowered bone density (think about menopausal women). People who are immobile already have a lowered bone density and people who are on a lot of meds also have a lowered bone density. (I have a friend with a child with disabilities and the caregiver lifted their leg to change a diaper and their leg bone snapped in half.) We also didn't see the need to put her through a major surgery. Although we were not looking forward to her starting periods we came to the realization that she already wore diapers. It wasn't like we would need to be changing pads and tampons and having bloody underwear.

Before starting the estrogen her endocrinologist had us do a bone scan. It is 1 x-ray of her left hand laying flat. It allows the Dr. to get a starting point on how her growth plates look. She would order another bone scan (of her hand) about every 6 months to see how her growth plates were fusing.

The estrogen (estrace) is a once a day pill that we crush and give through her g-tube.  

She did start a period, so we did start her on the progesterone (Provera). We started off giving it for 10 days once a month, then every other month, then every third month etc. Extended up to 5 or 6 months (no more than that). As long as she isn't spotting in between giving the provera we could continue to extend it.

Her breasts developed a little bit, but not a ton. Think...training bra.

The periods are really not that bad since she already wears a diaper. You are already taking care of every other bodily fluid, what's one more? It is uncomfortable for my hubby to change her diapers with her period. He will do it, but he doesn't like it. I (the mom) try to do most of the diaper changes when I am available because we feel like it is more appropriate (since she is a teenager), but he will do it when I can't.

Looking back...I personally think 45 pounds is when it starts getting harder to lift and care for your child. (This is not when we did the hormones).  But if you are thinking about it, I would start talking to Dr.'s about 40 pounds or maybe age 7. I wish Ellie was a bit smaller that she is. She is 63 pounds.

I get the feeling that our endocrinologist wouldn't want to do it before age 7 or 8. Maybe a different endocrinologist would.

Some things to think about if you are considering starting estrogen for your child. There may be other things, but these are the things which happened with Ellie:

• They go through a growth spurt when you start the hormones (you are sending them in to puberty).  
• They may start their period
• They may develop breasts after starting the hormones.  
• During puberty (which is what you are sending them in to) seizures can get worse
• During puberty bone density can get worse
• During puberty contractures can get worse (when you have a growth spurt your bones can grow faster than your muscles can stretch and they get almost an instant contracture).
• During puberty scoliosis can get worse.  
• Lungs and ribcage haven't grown to their adult size, possibly making breathing more difficult in the future

They are all things to think about. That being said, I am glad we did it. She now weighs 63 pounds...and will be forever. Like I said, I wish she was a little smaller...but it is what it is.  

Reasons I think growth attenuation is controversial:

• "Elective" surgery on your child (if you chose to go the surgery route)
• People don't understand how difficult it is to lift and take care of a fully-dependant person
• It would be uncomfortable for people to see a small person...ie: a 20 year old the size of a 3 year old
• Lungs and ribcage etc haven't grown to their adult size, possibly making breathing more difficult in the future
• Media hype
• I am not sure?!?!?!?!

When I started into this process I knew it was controversial, but after going through it, it is a no-brainer. It is not controversial at all (at least not going the hormone route). We have had no problems with media or Dr.'s or insurance, we have had no-one question us. Anyone we tell about it says they think it is a good idea. Now if you did it to a 3 year old, I think people might question it more.

I personally think the surgery is controversial, but the estrogen is not. I may be wrong.

Reasons I think using hormones to fuse growth plates is a good idea (in no particular order)
1. The child is going to get bigger and you are going to get older and weaker
2. If you want to be able to take care of the child at home, without putting them in a facility
3. Putting the child in a facility would cost more money
4. To save your back from lifting/bathing
5. The child becomes less mobile as they get bigger. When Ellie was little I could move her from place to place and put her in different positions easily. As she got bigger I tend to reposition her and move her much less because it is difficult. Remaining in one position is not good medically or socially or emotionally for the child. It is bad for breathing, digestion, bones, muscles, skin (bed sores), etc.

If you are thinking about looking in to hormones to "stunt" growth, here are the steps I would take:
1. Meet with a pediatric endocrinologist
2. (Optional) Meet with a pediatric OB, just so you can know what all of your options are. If you know you don't want surgery, then I would skip this step.
3. Think about it, pray about it
4. Go for it...do the xray and start the med. For us at least, it has not been a big deal like I thought it would be.

One other thing I want to mention before I end...if your child has scoliosis and will need rods/spine fusion...this will also stop them from growing larger to some extent because the spine will be fused. Ellie actually had both the spine fusion/rods and the hormones. But it may have worked to only do the spine fusion. Who knows?

Let me know if you have any further questions. We see Mary Murray (in Utah) at Primary Children's Hospital in Pediatric Endocrinology for these issues.

Sharing instead of sheltering

This is an article written by a high school friend about his friend's older brother with Autism. It is beautiful.

http://oneshetwoshe.com/2015/10/change-of-heart.html

This is my response I sent to the author (my friend)...

Thank you Dan. You brought me to tears. It touched me particularly because of my daughter, Ellie, who has disabilities. I often feel so out of place and that people just don't understand what I am going through. So I tend to distance myself from people because I can't bear to be hurt by their unintentional words and actions.  

Your writing helped me remember that by sharing instead of sheltering Ellie she (and I) can be an influence for good.

I am grateful to good men and women like you who are able to work through their awkwardness and see and purposefully interact with people with disabilities. This is how I always view the Savior. He would leave the 90 and 9 to search out the 1 with disabilities. I see this theme throughout the scriptures. He will be talking with a group of people and stop everything to go talk to or help a person with disabilities. This is a rare quality. The people that have forever found a place in my heart are those who will stop what they are doing mid-sentence and come to say hello to my non-verbal daughter. They get nothing out of it, but I do and Ellie does. They are true disciples of Christ.

Do you ever feel like you are sheltering your child instead of sharing them? Have you ever had someone step out of their way to come say hello to your child?