| Family First Feature |

Falling Short

Growth hormone shots are increasingly touted as the solution — but is it worth giving them a shot?

I gaze at my tiny five-year-old son, who’s sporting a deep frown on his face, and I know we’re in for one of those conversations, where I need to pull out all my mom-wisdom without thinking about everything I still need to accomplish.

“Why does it bother you?” I ask gently.

“Everyone was looking at my boots and saying how little and cute they are!” He spits the words out. “And Binyamin said I’m too small for first grade.” A pause. “Am I?”

My stomach is tight as I soothe my little boy. It doesn’t help that his almost-two-years-younger brother is exactly his height. I can’t count how many times I’ve received compliments on my adorable “twins,” only to watch my son’s face darken.

But this conversation finally pushed me to speak to the pediatrician, seek the help of a pediatric endocrinologist, and start down the sometimes difficult, often misunderstood, path of using growth hormone treatment to help him grow.

Permission to Grow

Growing, or a lack thereof, isn’t simply cosmetic. An unusually short stature could indicate a serious medical issue or a more benign but still problematic human growth hormone (hGH) deficiency.

“When our pediatrician saw that my son hadn’t grown for an entire year, he was alarmed,” Leah explains. “He sent us to a pediatric endocrinologist, who did a series of tests.”

After checking for conditions that can cause a failure to grow, such as heart problems, a thyroid issue, kidney disease, or celiac disease, the endocrinologist looked at the family history (are there any height-related problems in first-degree relatives?) and did a quick physical exam. He also took bone X-rays and a more detailed CT scan to see if her son’s chronological age matched his bone age, common when there’s a deficiency of hGH, since when there’s less growth hormone, bones don’t grow as well. A blood test also measured the insulin-like growth factor in the blood, a hormone that helps human growth hormone (hGH) work properly.

“After all those initial tests, my son also had to take a growth hormone stimulation test,” Leah explains. This is when the doctor gives the patient a medicine that should help the body produce a lot of hGH. “A nurse came to draw his blood a few times to check his hGH levels, since the levels often change.”

If any of the blood test results show low hGH levels despite the growth hormone stimulation medication, this indicates a real deficiency.

“The results were completely unexpected,” Leah remembers. “My son had no growth hormone at all. It was a shock.”

Unlike Leah’s son, most children with a short stature do have some level of growth hormones, which are produced by the pituitary gland, a small pea-sized organ located near the brain. Growth hormone deficiency (GHD) is when children grow abnormally slowly, or not at all, due to a shortage of this crucial hormone. While these children may have the genetic or inborn potential to be taller, they lack the growth hormone to reach their greatest possible height. GHD is also a cause for medical concern: While its primary function is to promote growth, children with untreated growth hormone deficiency can sometimes have more brittle bones, less energy, and an increased risk of heart problems. This crucial hormone (which adults need, too) keeps muscles strong, regulates the metabolism, and strengthens the bones and cardiovascular system.

HGH deficiency can be treated fairly easily with growth hormone injections, a treatment that has been around since the late 1950s, when the hormone was extracted from cadavers. Today’s modern, synthetic versions were first manufactured in the 1980s.

Like most children with growth hormone deficiency, Leah’s son was immediately started on a regimen of daily shots. “Our endocrinologist really walked us through the entire process,” Leah says. “He explained that the daily hormone injections would replace my son’s growth hormone, and that after taking his daily shots for a few months, we would probably start seeing results.

“For us, growth hormone was an incredible gift,” Leah continues. “Only a few months after starting, we already saw some improvement. My son was finally growing!”

“I’ve seen kids with profound growth hormone deficiency have an amazing response to growth hormone. It takes a few years, but they have accelerated growth, cross percentiles, and finally meet their genetic growth potential. In children with growth hormone deficiency, growth hormone allows a child to reach the height they’re supposed to be,” says Dr. Erica Eugster, MD, a pediatric endocrinologist at Riley Hospital for Children in Indianapolis.

The earlier kids take hGH, the easier it is for the body to reach a true final height. Most physicians believe that it’s ideal to start at age four to six, since once puberty is over and children are finished growing, hGH is useless. Taking hGH is a process that often lasts for years. Once children start taking injections, they will generally continue until the end of puberty.

A Sense of Safety

For children with GHD, injections correct a hormone shortage, similar to taking pills for thyroid issues. But despite this, some parents are wary; some cite concerns about the treatment’s safety, or its long-term risks.

“If used correctly, growth hormones are very safe. Some extremely uncommon side effects include terrible headaches or hip/leg pain, which can indicate serious problems, or an increased risk of insulin resistance. But most kids do really well, at most having some mild bruising from injections,” says Dr. Rebecca Geliebter, a board-certified pediatric endocrinologist in Bergen County, New Jersey.

“There’s been concern that hGH could predispose to cancer much later in life. The theory is that since hGH promotes growth, maybe it promotes abnormal cell growth as well,” Dr. Eugster explains, although she has never found this to be an issue. Dr. Geliebter is quick to add that this idea has largely been discredited.

Growth hormone treatment has been in use since the late 1950s. Studies over the course of those decades show that hGH is usually effective and safe. While long-term use of hGH does have potential side effects, for children with GHD, and others with legitimate medical needs, those side effects are rare. Unpleasant side effects are much more likely to occur in those who don’t have an actual hormonal deficiency or an approved medical condition, yet still pursue the use of treatment, since hGH levels in the body will become too high. According to the majority of doctors and hospitals, using hGH under the careful supervision of a pediatric endocrinologist is generally considered both safe and effective.

When There’s No Deficiency

Some children may have true hormonal deficiencies or a medical condition affecting their growth, while others are just short for unknown reasons. This is called idiopathic short stature, or ISS (to add to the alphabet soup of acronyms…), a diagnosis that applies to about three percent of the population in the US.

“ISS is more of a diagnosis of exclusion,” says Dr. Geliebter. She’s discovered children with celiac and thyroid disease (among other issues) when testing for GHD. “If it’s nothing else, and patients meet criteria for extreme short stature, we diagnose ISS and treat with hGH.” While kids with ISS need higher doses of hGH, since their bodies don’t seem to use the hormone properly, it’s as safe for them as for children with GHD.

“We use multiple blood tests to diagnose both GHD and ISS,” Dr. Eugster explains. “Slow growth is something we look for, along with a younger bone age.” A child’s height percentile dropping after the third birthday is a major red flag for both types of growth problems. The official medical label of ISS would be applied to a man under five foot three or a woman under five foot one; children whose projected height trajectory falls into those categories would be diagnosed with ISS. The FDA does approve hGH treatment for children with ISS, but insurance doesn’t always cover it (unsurprisingly).

“We took my son for testing multiple times,” Rena shares. “He was projected to reach less than five feet, which is clearly ISS, but because he didn’t have GHD, insurance wouldn’t cover treatment, and the shots are thousands of dollars a month. It was way too expensive for us. I was devastated.”

Should children with ISS be treated, or left to grow at their own (short) pace? Parents and medical professionals debate the issue.

“I told my daughter it doesn’t matter if she’s short. At the end of the day, it’s who she is inside that matters. I know plenty of short people who are amazingly successful and well-liked,” Shuli says.

But Dr. Adda Grimberg, a pediatric endocrinologist at Children’s Hospital of Philadelphia, has found that many parents of kids with ISS seek treatment, assuming that it will improve their children’s quality of life. They are concerned that their children will be teased, bullied, or personally embarrassed by their size, and suffer from low self-esteem as a result.

And in the frum world, of course, there is the eternal worry: shidduchim. While frum society hasn’t merited a study of heightism (yet), the unscientific opinion is that in our circles, there are plenty of short men and women who are revered across the Jewish world. Our leaders are not chosen based on externals. But the same can’t be said for shidduchim.

“I’m short,” says Sara. “Whenever we got a call, my mother would say: ‘You’re not redting him just because he’s short, right?’ ”

Shloimy, a respected shadchan with decades of experience, has seen this come up again and again. “Some families insist that they need a tall boy. And some boys and girls who are very short can have trouble in shidduchim. There was once a singles event, and I was called for names of boys. I had an amazing boy who was very short, but the event organizers didn’t want him to come. They didn’t want to ‘waste the girls’ time,’ they told me. These were girls who were in their late twenties and early thirties. I insisted, and he attended the event. Incidentally, he was the only boy who got engaged, to a girl who would probably have refused him on paper, but appreciated his qualities in real life.

“I’m not trying to make anyone nervous about their height,” Shloimy continues. “Being short is like any other difficulty in shidduchim. I’ve seen plenty of short girls and boys walk down to the chuppah, but as a shadchan, I know the facts. Height is something that many people care about.”

Others disagree with the idea that being short is a medical problem that should be treated. “A concern in children with ISS is that when you take a healthy child and make them take daily injections for height, you’re giving them the message that something is wrong with them,” says Dr. Eugster. “And when taking hGH for ISS, the outcome is generally modest, maybe one to two inches of added height, so it’s very controversial whether such treatment is reasonable.”

Sara, who is herself short, disagrees. “There’s a big difference between a boy who’s five foot one and one who’s five foot three,” she insists. “I want my son to take growth hormone. We switched endocrinologists until we found one who worked with us.”

Some parents of children who are very short but do not fit the definition of ISS still want to pursue treatment with hGH, paying out of pocket for the injections. For these kids, high doses of hGH can (sometimes) make a difference, but the treatment also carries a high probability of unpleasant side effects. Those frightening tales about hGH patients growing extra body parts (one popular rumor)? A result of a condition called “acromegaly,” where people (who shouldn’t be) taking high doses of hGH see organs or body parts become abnormally large.

For all patients coming to her with growth concerns, whether it’s GHD, ISS, or just ordinary short stature, Dr. Geliebter makes sure that both the medical and psychosocial aspects of shortness are addressed. “Both are equally important and need to be taken into account, whether they’re treated with hGH or not. At the end of the day, I want my patients to realize that they can do anything, regardless of how tall they are.”

Growing Pains

Just because parents choose to go ahead with hGH treatment doesn’t mean their insurance is on board. Getting insurance coverage for GHD can take time, and for ISS, the process is often even more complicated. Because while since 2003, ISS has been on the list of FDA-approved diagnoses, sometimes the insurance that agrees to cover GHD will refuse to cover ISS, claiming it isn’t medically necessary.

After all the testing is done, if an endocrinologist gives a diagnosis, the request for medication is sent to the insurance company. While every insurance is different, it can take between two to six weeks, at best, to receive a response.

And when insurance finally (hopefully) comes through, the children themselves aren’t always interested. Parents need to brace themselves for the almost monthly problems that accompany the process of using hGH, because when it comes to growth, there’s always growing pains.

“My son was not excited about taking daily injections,” Leah admits. A nurse came to their house to explain how to administer the carefully calculated dosages. Daily shots, given in different locations (arms, thighs, back, or stomach) right before bedtime, help keep hGH levels high during the night, which is when children grow the most. Older children can even administer their own medication. The needles are relatively small, but shots can be scary, even when they’re practically painless.

“He refused to cooperate,” says Leah. “And then one day Hashem let my son see an unusually short person, and he was finally willing to start.”

As Leah’s son saw the inches adding up, and his clothing sizes finally changing, he finally admitted how excited he was.

“I didn’t care so much about how tall I was,” he told Leah, “But now that the shots are working, I really want to keep doing them!”

But the growing pains don’t end there. Taking hGH is a commitment. The medication needs to be kept cold, which can pose a challenge while traveling. Skipping doses, too, often makes the treatment almost completely ineffective, since children need a steady supply of hGH to grow properly. There are also constant drug shortages. While drug companies can churn out an endless supply of synthetic hGH, supply chain problems, high demand, and manufacturing delays all contribute to the scarcity.

“What’s really annoying about insurance is that every time we need to change the size of the pen that holds the hGH (we use the 5mg or 15mg sizes), which happens when companies run out of specific pen sizes, we need to beg the endocrinologist for a new prior authorization — even though the daily dose of hGH stays exactly the same! The rules can be ridiculous,” says Leah.

In some states, hGH is a controlled substance, so parents need to pick up and sign for the medication at specified locations.

“At one point, the endocrinologist prescribed a different generic brand of hGH, but it actually really hurt when we were giving the shots. The shots became such a daily battle, but the pharmacy said they didn’t have Norditropin, the brand we normally use. I finally called one of the largest companies that manufactures hGH in the US — Novo Nordisk — for help,” Leah recalls. “Every month there’s drama. But the end result is worth it.”

Hashkafah and hGH

How does using growth hormone measure up from a halachic perspective? Are hGH injections a form of flouting Hashem’s plan? Is it considered safe?

“I’m all for it,” declares Rabbi Shmuel Fuerst, Dayan of Agudas Yisroel of Illinois and Rav of Agudah of Peterson Park. “Being short — for example, if a child will be four foot ten — can affect shidduchim and self-esteem. If they take growth hormones, and they’ll be over five feet, that’s an improvement.

“Someone in Chicago went to Eretz Yisrael to ask a sh’eilah about using growth hormone for a very short child. He spoke to Rav Elyashiv, who was with his son-in-law, Rav Yitzchok Zilberstein, and they both encouraged it.

“I’ve done research on the topic, and I tell people to do it.

“The only thing is that people should not do injections over Shabbos and Yom Tov. Take the injection before and after Shabbos and Yom Tov. This is only problematic over a two-day Yom Tov, but missing one day is usually fine, unless there’s a serious problem and this can impact a person’s health.”


(Originally featured in Family First, Issue 900)

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