[DoulaVallere]

I hope this is the right forum to put this in, I just have a few questions about some upcoming appts/tests for our DS2 and was wondering if anyone had been in a similar situation.<br><br>
DS2 is at or below 1st percentile in height and weight and pretty much has been for the past year or so. He's 31mo and is 23lbs and 33in. Otherwise, he's a completely normal, on track, very active 2.5yo. At birth he was 6"10 and 19in, was EBF till about 9 or 10 mo, then started to add a few solids here and there as he was interested. He continued to nurse for most of his nutrition until he was about 20mo or so, then his solids intake increased significantly, but he continued nursing frequently until about 25mo, at which time I was about 3 mo pregnant and totally dried up. He now eats like a horse, but still just isn't gaining very much in either height or weight. The ped has kinda been on our case about "bulking up his solids intake" for a looong time, but you can't MAKE a kid eat, and he really just didn't care to at all till almost his 1st birthday, and after that we were making sure to add high-fat foods as often as possible like full fat yogurt, avacado, peanut butter, etc. But no matter what he eats, he's still just so tiny...he turned 2 back in Oct and still fits in most of his 18m clothes.<br><br>
For background reference, our older son was born at the same gestational age (39weeks) but was a pound heaver and almost 3 inches longer. He's skinny, but has consistantly been in the 25-30th percentile for height and weight.<br><br>
Anywho, DS2's ped talked to DH and I at his appt about 2 weeks ago about some non-invasive testing just to make sure things are ok. We all agreed it was probably a fishing expedition, but 1st percentile is kinda concerning and we really do want to make sure his pituitary is functioning ok, so we agreed to a stool test for fats and reducing substances and if that came back ok, to get a referal to the pediatric endocrinologist. I just heard back from the stool sample and everything was negative, so they are making us an appt with the endo.<br><br>
I'm just wondering 1) what to expect when we go...my DH is a child psychiatrist, but we are not huge pro-doctor people (both boys were born in a FSBC and we are planning a homebirth this time) so going to see a specialist is new territory for me...and 2) does anyone have a child with growth hormone deficiency that I could chat with? Just wondering about symptoms/features/treatment options, etc...I like to research things ahead of time so I want to be well prepared when we go in.<br><br>
Personally, I've always just thought he was my tiny guy and it doesn't bother me that he's small. Even if he has some form of dwarfism, I'm not concerned (though DH would want to do hormone treatments if it turns out it's a deficiency...I'd be happy just to leave him the way God made him, but that's a debate for another time). But I guess thinking that he might have a pituitary problem could be more than just a height issue...it could affect other hormones that could make him not mature sexually and could affect his intelligence later, so I really do want to find out what is going on with him.<br><br>
Any advice or BTDT moms who can chime in?

 

[reneandbaby]

My six year old son has a growth hormone deficiency. He was born full term with Interuterine Growth Restriction and was 18 inches and less than 6 pounds.<br><br>
We first visited the potential of endocrine issues when he completely stopped growing for 9 months--- both in height and in weight--- between the ages of 9 months and 18 months. Before then we were having issues with his weight gain. When he didn't grow in height we did an MRI that showed a normal pituitary gland, and other blood work that showed he had low growth hormone. However, low growth hormone can be caused by inadequate intake of calories and he DEFINITELY had eating issues (was diagnosed with unexplained infant anorexia and almost ended up on a g-tube, but that's a story for another day). Anyway, as we improved his eating issues, he did start to finally grow, limping around a curve well below the 1% but it was a consistent curve and we determined that so long as he maintained a growth curve of his own we'd leave the endocrinology stuff alone. He limped along for a few years, and then continued to make gains in weight but not in height. He hasn't grown in height in two years, though he has gained about four pounds in that period. At six, he is 40 inches tall and 32 pounds. So, we decided with his pediatric team to re-send him to endocrinology, which re-did a whole bunch of blood work and determined he does have low growth hormone.<br><br>
We've decided to treat him. Growth hormone doesn't *just* affect how tall you grow to be, documented low growth hormone can also cause other physical issues like headaches (which my son complains of all the time), stomach pain, and tiredness/fatigue. My son has already been treated for severe sleep apnea, he's already been treated for his gastroenterology issues (celiac's disease) and several other conditions that can cause these symptoms as well but they still persist. I figure I treated his celiac's, I've treated his sleep apnea, and if he has a true clinical endocrinology disorder I'll treat that too. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> He's *just* starting the shots for it--- they haven't even come in yet, so I can't speak to that part of it at this point.<br><br>
As far as the testing, they do blood work, take x-rays of the fore-arm to measure bone age, and if they think it is warranted they'll order an MRI to look at the brain/ pituitary gland, which at his age will be a sedated procedure. They'll ask lots of questions and they'll want to see his growth charts from birth. Usually, they will tell you that so long as they're maintaining a growth curve, there is not an issue--- some kid needs to be in the 1% KWIM? It's when they're NOT growing or they fall off their growth curve that they get concerned.<br><br>
Good luck! I hope you get a great pediatric endocrinologist who can help you find answers. :heart

 

[bri276]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">We've decided to treat him. Growth hormone doesn't *just* affect how tall you grow to be, documented low growth hormone can also cause other physical issues like headaches (which my son complains of all the time), stomach pain, and tiredness/fatigue.</td>
</tr></table></div>
And IQ, and IGF-1 levels, etc...<br><br>
Yeah, giving growth hormone when there is a deficiency is really more like replacing a mistake the body is making so that they can reach the height God intended them to be, IMO!<br><br>
My DD has a GH deficiency and has been on GH treatment since she was 15 months old. She started out at 25th percentile and dropped to 3rd, and is now about 20th again. The testing for it is invasive- involves hours hooked up to an IV and often an MRI to make sure there are no pituitary tumors. Usually insurance companies require a child to fail the test twice to qualify, but there are some loopholes, and there are some GH manufacturers who offer a program based on income. My DD has a chromosomal syndrome that requires GH treatment, so we were able to bypass the insurance company when they said they wouldn't approve it and work with the manufacturer without any additional testing (she only had one GH stimulation test and one MRI- both were uneventful).<br><br>
I'd recommend that you join MAGIC, there is a yahoo group email list and there are often a lot of people in your position who have lots of questions.<br><br><a href="http://www.magicfoundation.org/www" target="_blank">http://www.magicfoundation.org/www</a><br><br>
But I'd probably wait and see what the ped endo says, many are very conservative about treating for idiopathic short stature if that is indeed what it turns out to be. Good luck.

 

[DoulaVallere]

Thank you for the input, and the website...I'll definately check that out. I'm really hoping that all we find out is that he's "just" short...right now, he doesn't have any other issues (other than being a high needs kid from birth...wondering if he's on the way to being ADHD later on...he's never been a good sleeper and has climbing-the-walls energy). He's totally on track for motor skills, eats a variety of foods, no signs of food allergies, healthy as a horse (I think he's had maybe 1 ear infection? and just some seasonal allergy stuff with pollen, but otherwise VERY healthy). For now, he actually does have his own curve, but it's hovering around the 1% mark. Anyway, again, thank you <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">

 

[chiefmir]

I don't have a child with growth hormone deficiency, but I do have a husband with it! he is 39 years old and was diagnosed at about 18 months old... but this was a LOONNGG time ago and he would have been "figured out" much earlier nowadays, as he didn't regain his birth weight until almost a year (I think). He has been on growth hormone through most of his childhood (starting at about 4.5 and going through he had completed puberty) and then started up again in his late 20's when more evidence came back for continued treatment (though at a much lower dose) for adults (he's been taking it ever since). FWIW, he probably would have been under 4 feet tall without the growth hormone, as his issue was due to a congenital pituitary deformity. He DID go into puberty on his own, but very late (like late high school and college). In college he also started testosterone supplements to add body/facial hair... and when we have not been TTC he stays on them due to other protective medical benefits. He has well above average IQ (most likely in the gifted range), is a pediatrician, and has been able to father 2 daughters (I'm pregnant with #3 now) despite being forewarned about fertility problems. He is 5'6" and very happy with the height.

 

[DoulaVallere]

It sounds like most of you are saying that GHD would mean that he would have had more issues along with it, not *just* short stature? We had no interuterine growth issues, no real feeding issues (he just wasn't interested in solids till about a year old), he regained his birthweight just fine, etc. So should this give me hope that what we are dealing with ISN'T a pituitary issue?

 

[2boyzmama]

We are in this process right now!<br><br>
My son was born large for gestational age, then dropped very quickly, from 9 months on he's been 3rd percentile or lower for height and weight (his height has on occasion touched the 5th percentile line I think) He's had a whole host of other medical issues related to a chromosome deletion, so we've been working on treating/managing each one. Now that he's very stable medically, and still below the 3rd percentile line, we were finally referred to endocrinology.<br><br>
That appt was just last week. The dr reviewed his growth charts from birth, and every lab ever done (which is a lot!) They did bone age scans that day (an xray of his arm and leg).<br><br>
Right now, because his rate of growth has been consistent, and because all of his labs have been normal (screening labs include thyroid, parathyroid...and I can't remember what else. We also did a full metabolic workup and other GI type labs), for now we are going to just keep monitoring him. He had an MRI previously because of aspirating issues, so that would have shown a pituitary tumor. If his labs ever are "off", if he drops off of his own curve, or if his bone age is off, then we'll re-evaluate.

 

[Birdie B.]

Good luck getting answers! We have been searching for answers since our daughter was born, and are still looking. She is very tiny, and has been a slow grower her whole life. She's well below 0 percentile in size, although she has her own curve. We have been seeing a ped. endocrinologist for about a year now, and so far he's just observing her. All the tests he ran came back normal (thyroid, growth hormone, bone age), and genetic testing hasn't turned anything up either.<br><br>
At our most recent appt, he mentioned that if she hasn't caught up to the growth curve by the time she's 2, we can start growth hormone treatments to help her grow. I am very very reluctant to do this, since we don't know that there's anything wrong with her hormone production! Like you, I figure she's just petite, and she's had lots of surgeries in her little life that have taken a toll on her growth. Now that she hasn't had surgery in almost a year, she has chunked up and is thriving! So I know how you feel - you don't want to treat something that is not really a problem. Being short isn't a health problem, and as far as we know, my daughter doesn't need supplemental growth hormones.<br><br>
So good luck to you. Hopefully the endo. will run some tests, observe your son, and wait.

 

[OdinsMommy0409]

We've known since 9 months that DS has growth hormone deficiency; he has hypopituitarism so he fails to make multiple hormones.<br><br>
Initially, ped endo did preliminary bloodwork to measure IGF-1, ADH (antidiuretic hormone), TSH (thyroid-stimulating hormone), LH/FSH (to check his testosterone production), and cortisol levels. When his initial bloodwork indicated a broader endocrine/pituitary disorder, ped endo also ordered an MRI to exclude tumor, malformation, and dead pituitary as cause.<br><br>
Yesterday, we had the official growth hormone stimulation test (particularly DS had the arginine-glucagon test) for insurance purposes. DS grew slowly but on a curve his first 7 months, then he started to plateau, and hasn't grown since 9.5 months. The worst part of the test was the IV and subsequent tourniquet applications. While the hospital told us to have DS fasting for the test, the ped endo told us to feed and nurse as much as I wanted until procedure time.<br><br>
Another reason for the wait in starting GH therapy has been to make sure that DS's central diabetes insipidus (nothing to do with Type 1 or 2 diabetes and is a part of his hypopituitarism) wasn't contributing to his growth failure.<br><br>
Good luck with making your decision. I would also note that untreated GH deficiency doesn't necessarily show its ill effects until later in life. Feel free to PM or ask more questions.

 

[DoulaVallere]

Well, I just got my packet from the ped endo's office. 5 pages of questions to fill out on DS2's medical history as well as family history. And a page FULL of lab tests they want done...<br><br>
Free T4<br>
TSH<br>
T4<br>
IFG 1<br>
IGF BP 3<br>
Comprehensive metabolic panel<br>
CBC3dif<br>
celiac disease comprehensive panel<br>
UA (or VA? can't read it LOL)<br>
ESR<br>
Zinc<br>
25 OH Vit D<br><br>
Plus an x-ray of his left hand for bone age.<br><br>
I ran the ones I didn't already know by my DH (he's an MD) and as he explained what each one would be looking for, my heart sank just a little more. I guess filling out all that paperwork and seeing the date for our appt (June 2) and seeing all the things they are testing him for just makes it "real"...there really COULD be something wrong with my wee bit. So I'm a little overwhelmed right now, I guess. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
That's 12 tests plus the x-ray. Does anyone have any idea how many vials of blood we are talking about? And are they all blood tests? I was wondering if the celiac was a stool sample? NOT looking forward to holding him down for this...we don't even vax. The only time he has had a needle in him was when his lead levels came back high and we had to do a blood draw for that. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">

 

[OdinsMommy0409]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>DoulaVallere</strong> <a href="/community/forum/post/15407425"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Well, I just got my packet from the ped endo's office. 5 pages of questions to fill out on DS2's medical history as well as family history. And a page FULL of lab tests they want done...<br><br>
Free T4<br>
TSH<br>
T4<br>
IFG 1<br>
IGF BP 3<br>
Comprehensive metabolic panel<br>
CBC3dif<br>
celiac disease comprehensive panel<br>
UA (or VA? can't read it LOL)<br>
ESR<br>
Zinc<br>
25 OH Vit D<br><br>
Plus an x-ray of his left hand for bone age.<br><br>
I ran the ones I didn't already know by my DH (he's an MD) and as he explained what each one would be looking for, my heart sank just a little more. I guess filling out all that paperwork and seeing the date for our appt (June 2) and seeing all the things they are testing him for just makes it "real"...there really COULD be something wrong with my wee bit. So I'm a little overwhelmed right now, I guess. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
That's 12 tests plus the x-ray. Does anyone have any idea how many vials of blood we are talking about? And are they all blood tests? I was wondering if the celiac was a stool sample? NOT looking forward to holding him down for this...we don't even vax. The only time he has had a needle in him was when his lead levels came back high and we had to do a blood draw for that. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"></div>
</td>
</tr></table></div>
DS has had all the same tests. It seems to be the standard when looking for GH deficiency. If I remember correctly, they took at least 6 vials of blood from DS. (He's a wee man and was anemic for a couple weeks after). The UA might be to check for diabetes insipidus indications (another pituitary problem). The celiac was a blood test for us as well to look for auto-antibodies.<br><br>
If he shows multiple deficiencies, I know pedi endo will order MRI for images of the brain. And, if he shows IGF deficiencies, he'll need an official GH stimulation test for insurance purposes.<br><br>
I truly understand how overwhelmed you are feeling. I'm happy to answer more questions or share more about my experience as a mommy to a hypopit child. Good luck with everything. You might find it useful to use a medical doll with DS to talk about the blood draw and how he gets a colorful bandaid or bandage after.

 

[DoulaVallere]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>OdinsMommy0409</strong> <a href="/community/forum/post/15407562"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">DS has had all the same tests. It seems to be the standard when looking for GH deficiency. If I remember correctly, they took at least 6 vials of blood from DS. (He's a wee man and was anemic for a couple weeks after). The UA might be to check for diabetes insipidus indications (another pituitary problem). The celiac was a blood test for us as well to look for auto-antibodies.<br><br>
If he shows multiple deficiencies, I know pedi endo will order MRI for images of the brain. And, if he shows IGF deficiencies, he'll need an official GH stimulation test for insurance purposes.<br><br>
I truly understand how overwhelmed you are feeling. I'm happy to answer more questions or share more about my experience as a mommy to a hypopit child. Good luck with everything. You might find it useful to use a medical doll with DS to talk about the blood draw and how he gets a colorful bandaid or bandage after.</div>
</td>
</tr></table></div>
Oh my word...6 vials? Good grief he only weighs 23 lbs...he'll be dry as a bone! I guess I better fluid load him before and after. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> Ug...thank you again for the input. I'm REALLY hoping everything comes back normal and we can just say "he's just short" and go on with life. The thought of daily shots scares the poop outta me.<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/gloomy.gif" style="border:0px solid;" title="Gloomy">

 

[OdinsMommy0409]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>DoulaVallere</strong> <a href="/community/forum/post/15407930"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Oh my word...6 vials? Good grief he only weighs 23 lbs...he'll be dry as a bone! I guess I better fluid load him before and after. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> Ug...thank you again for the input. I'm REALLY hoping everything comes back normal and we can just say "he's just short" and go on with life. The thought of daily shots scares the poop outta me.<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/gloomy.gif" style="border:0px solid;" title="Gloomy"></div>
</td>
</tr></table></div>
Yeah, I was shocked at the number of vials they took especially since DS was just shy of 16 lbs. And, I completely understand how you feel about daily injections as I feel the same way.<br><br>
BTW, the really awesome thing (it's how I'm looking at it now) about the GH injection needles. They're now practically as small as a bee stinger but without the sting. We haven't started therapy yet, but we've heard from other parents that their LOs don't even feel the injection. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">