Human Growth Hormone Deficiency

[Anonymous]

I am looking for advice from parents who have had to choose between treating a child with HGH deficiency or not. DD has been seeing an endocrinologist and HGH treatment may be medically recommended, but my husband and I are extremely uncomfortable with the risks and side effects of the drugs, and also concerned it sends a message to DD that she is sick and needs treatment. Full disclosure, DD hasn’t been diagnosed with HGH deficiency yet. She has been diagnosed with IGF1 deficiency and delayed bone growth and further HGH testing is advised. But we are wondering if we should even subject DD to the testing if we are opposed to the treatment. We are trying to weigh the long term risks of treatment with the consequences of an untreated deficiency and it’s not an easy decision.

[Anonymous]

What risks are you concerned about? Side effects are relatively uncommon. What is her final predicted height? My DD has Turner Syndrome and most of the older women with TS (who did not have the benefit of growth hormone) have said that very short stature has been quite disabling.

I also think you need to adjust your thinking about medical intervention in general as being fixing something that is wrong with your daughter. She will get that message if that’s what you believe. You are giving her the opportunity for her body to work the way it was meant to. If her pancreas stopped working, you would give her insulin.

[Anonymous]

OP here. I may be overthinking this without all the data we need to make a decision. This is all very new and I’m trying to wrap my head around it and check my own biases as I feel them emerging. I have a long family history of medical intervention, some of which wasn’t necessary and did have longterm consequences, and some of which was absolutely life saving. If DD had Turner Syndrome, I would treat her absolutely. But I suspect DD’s situation will be more grey. She is tiny, while DH and I are both quite tall, but aside from short stature, low IGF1, and allergies, DD appears fine. If there were another medical reason, I think I’d feel differently. DH is more opposed to intervening as he thinks his little girl is perfect the way she is and doesn’t want to mess with her self image. Neither do I - I just have a nagging feeling we’re missing something.

[Anonymous]

Anonymous wrote:OP here. I may be overthinking this without all the data we need to make a decision. This is all very new and I’m trying to wrap my head around it and check my own biases as I feel them emerging. I have a long family history of medical intervention, some of which wasn’t necessary and did have longterm consequences, and some of which was absolutely life saving. If DD had Turner Syndrome, I would treat her absolutely. But I suspect DD’s situation will be more grey. She is tiny, while DH and I are both quite tall, but aside from short stature, low IGF1, and allergies, DD appears fine. If there were another medical reason, I think I’d feel differently. DH is more opposed to intervening as he thinks his little girl is perfect the way she is and doesn’t want to mess with her self image. Neither do I - I just have a nagging feeling we’re missing something.

OP, how tall do they think she would grow up to be, without medical intervention? How tall would she be with medical intervention, assuming that a HGH deficiency is diagnosed?

[Anonymous]

How tiny is she? How old and how tall?

[Anonymous]

We are just about to embark on this, and to us it’s a no brainer. Our son is slated to be between 5’1 and 5’3 without intervention so we will definitely be intervening.

[Anonymous]

Definitely get more information first. A friend's child was treated at NIH years ago and had a very good experience with the team, the consultation, the decision process. It's not just about height - there can be serious associated health consequences with conditions that cause short stature. Keep loving her and focusing on all that is wonderful about her. As you make this decision, make the focus on her health. Which may involve taking HGH, depending on what tests show etc.

Best of luck to you, OP.

[Anonymous]

OP here. We still don’t know the answers that will help and I admit I’m stressing prematurely. I’ve been known to do that. DD was just tested at NIH and I’ve received the results but haven’t had a follow up with her doctor yet. I should have waited to post but my anxiety got the better of me. DD is 11, 50 inches tall and 49 lbs. DH is 6’3” and I am 5’9”, both tall with slim builds. Her bone age is two years delayed and her IGF1 is low. That’s all I know at this time. I will report back when I learn more.

[Anonymous]

Low HGH impacts way more than just how tall someone will be.

[Anonymous]

We treated DS. To my mind, his body was not producing hgh. If his body wasnt producing insulin, would I not want to medicaly intervene? Of course I would get him insulin! Doing the growth shots, imo, was about getting his body to the way it *should* be. For us, it was not treated like something was "wrong" with DS but rather matter of factly like any other medical issue. We get casts on broken arms, we get medicine to treat strep. This was no different.

As pp mentioned, there is also more at stake than pure height, the lack of sufficient hgh interacts with many different body systems.

[Anonymous]

Anonymous wrote:Low HGH impacts way more than just how tall someone will be.

What are other functions impaired by low HGH? My understanding is that it’s a controversial treatment because stature is the primary function impaired and insurance often denies treatment on the grounds it’s not medically necessary. Is that untrue? I’m not doubting, just trying to collect more data.

[Anonymous]

My DS has been on HGH shots for 4.5 years, since he was 7 and after he steadily fell from 10th% (at birth through age 3) to below the charts.

Some of the related issues were very late teething, very late to lose teeth, slower gross motor issues.

We went through a billion rounds of testing to prove that this therapy was needed (it's very expensive so insurers are apt to deny at first but will approve with additional documentation), but the endocrinologist explained that there aren't really side effects because it's just replacing something that should have been in his body all along, like insulin.

We do shots at home 6 nights of the week and it has really become very easy to deal with. He is monitored every 3-4 months by xray (bone age scan) and labs by his endocrinologist and based on today's apt, will continue until he is 14 or 15 years old.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Low HGH impacts way more than just how tall someone will be.

What are other functions impaired by low HGH? My understanding is that it’s a controversial treatment because stature is the primary function impaired and insurance often denies treatment on the grounds it’s not medically necessary. Is that untrue? I’m not doubting, just trying to collect more data.

Muscle development, for one.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Low HGH impacts way more than just how tall someone will be.

What are other functions impaired by low HGH? My understanding is that it’s a controversial treatment because stature is the primary function impaired and insurance often denies treatment on the grounds it’s not medically necessary. Is that untrue? I’m not doubting, just trying to collect more data.

It's controversial for idiopathic short stature. But this isn't idiopathic short stature, it's human growth hormone deficiency.

[Anonymous]

Both of my kids take HGH shots due to a low-functioning pituitary gland (they have been taking them for 2-3 years now). They also need to take supplemental thyroid (and have been for about 8 years). Have you tested your daughter's other hormone levels -- like prolactin, cortisol, etc.?