Any parents of a Little Person on here?

[SashaBreeze]

A couple of days ago I was looking around on line trying to find a local support group for other kids with our sons lvl of growth hormone deficiency (didn't find one) and I stumbled onto some surprising information. I had never really bothered looking up much info before and relied on the information given to us from his doctors. So you can imagine my surprise when I found medical journal entries over and over again that referred to my sons condition as Pituitary Dwarfism. Aparently a few years ago "they" decided to call the condition Growth Hormone Deficiency instead to lesson the stigma.
There a varying degrees of GHD ranging from those kids that are just shorter than most (which does NOT meet the qualifications for the old term of Pituitary Dwarfism) to the opposite end when a child will grow dangerously slow without the aid of artificial hormone. Our sons falls into the last category. Aparently the danger is/was that often times the body would not grow to keep up with the inner organs... and well you can imagine the results.
So you can imagine my confusion. We were under the illusion that with his shots he would reach an average height, not that is disturbs us that he will not, it just comes as a surprise and I am very confused as to why no one took the time to explain everything to us. According to the older medical journal entries height increases rapidly the first year or two of taking the shots bringing most kids up to the low end of average (which is what happened with our son) and then they grow an average of 2cm a year after that until between ages 16-24. I did some quick math and that would bring our son (assuming he continues to grow until age 24) right around 4 foot tall.
I am completely ok with all of this, except I am mad at his doctors. I feel like we had a right to know. At his last endo appointment they had commented that his accelerated growth had stopped but assured us that was completely normal and that he was healthy and not to worry. I had no clue what that really meant. They are constantly watching/checking his legs and they have him in AFO's at the moment because they were slightly turning in, they once again said no big deal that he would wear them for about 6 years but shouldn't need more aggressive treatment. Blindly, stupidly I didn't even think to question what that really meant.
I know, I know it is up to us the parents to research and double check everything but honestly I just feel like the wool was pulled over our eyes on this one. I had no idea there was a reason to double check. I called to get an appointment to confront them about all of this but because there are only 2 of his type of specialist in our state I could not get in until August.
Sigh, I just wish I had known from the first day of diagnoses so I could have, I dont know.... I just feel like we should have been told.
So if you are the parent of a Little Person, how much ,if any, does this change our/his world?

[DoulaVallere]

We *might* end up being in the same boat as you. Our son has a preliminary diagnosis of GHD: his IGF-1 was 2 SD's below normal, he's in the 1st percentile for height and weight, and has bone age about a year below his actual age. We go in Aug for his stim test to find out how much (if any) GH he's making. Right now, if we did nothing, he would *maybe* reach 4ft based on his current growth rate.

I'll keep an eye on this thread, and you can PM me if you want. We are right at the beginning of our journey.

[urchin_grey]

Hi there. I'm not really sure I can answer your questions... DS is only 5 so really all we've had to deal with so far is "he's 5???"

We've only just begun testing though, so his diagnosis isn't even confirmed yet. But we suspect pituitary dwarfism/hypoplasia. We're not sure yet. All we know is that he is very small, and a small percentage of patients with his primary diagnosis (a rare brain malformation) also have pituitary dwarfism. So that's what we're testing for first.

[urchin_grey]

I couldn't even tell you where DS is on the chart because it doesn't go that low.

[Cinder]

Originally Posted by urchin_grey

I couldn't even tell you where DS is on the chart because it doesn't go that low.

Yea, River was diagnosed with a growth hormone deficiency last month, we are also looking for other issues, as he has some other small issues that all point towards a genetic syndrome. But, even my other two kids who are small just not as small as River and who seem to just be genetically small, all medical tests have came back 100% normal for them, weren't on the charts till 4 years old, and that was only Janelle (Travis isn't 4 yet) and only for height, she still isn't on the charts for weight. Travis is almost 3 and very far below the charts for height, and just a little below for weight. When Janelle had all of her testing done they put her adult height at 4'6", she however has grown a ton since then, so I'd be surprised if she doesn't reach 5' now. Travis right now is predicted to be 4'9"...he is a candidate to try growth hormones at some point if we want, but he doesn't have any growth hormone deficiency, so we probably won't.

[SashaBreeze]

Thank you ladies for your responses. I totally understand about not even being on the growth charts. I still remember the first appointment we went to that Aiden was on the chart, how excited we all became, we went out for dinner to celebrate! lol
Honestly if all the awareness of his condition means is that he will be far shorter than we expected than no problem with us. Although I do wonder what that will mean as far as adjustments will will need to make for/with him when he gets older, like with driving and such. What really concerns me is what this means for his legs and some of the digestive issues he has had since birth. I just want answers and to be talked with plainly and straight forward with his doctors instead of feeling like something is being hidden from us. I suppose I will just have to wait until August to find out.

This has all been such a roller coaster for us. When he was 6-7 months old and had not grown they slapped the failure the thrive label on him despite him being a good eater. And it took days in the children's hospital under a critical eye before they finally figured out that yes I was feeding him. They would come in and weigh him before he nursed and then come back and weigh him again afterwards. I cried my eyes out when a doctor finally came into our room and said that although they still didn't know what was going on they knew it wasn't us.

So now I am wondering if he has pituitary dwarfism is it even the right thing to continue him with his shots??? There is the very real risk, although rare, that the shots can cause swelling on the brain. Every time they up his dose we have that worry all over again. They are particularly watchful with Aiden when upping his dose because he suffers from chronic headaches. Unless it is absolutely necessary that he receive these shots than am I not risking his life just so he can be a little taller???

Sorry I am emotional today. I am soooo frustrated that I can not talk with his doctors until August and you add pregnant with twins hormones into the mix and you have a very easily upset woman on your hands.

Thank you all for listening to me, I think I just really need the extra support right now. And for all you ladies going through this as well I am so glad to meet you all, it makes me feel less alone. I hope our appointment with Aiden's doctors, when it finally comes, can help all of you as well.

[urchin_grey]

Yeah the chart our ped uses cuts off after 37" under DS's age, but he's only 35".

From what I understand though, a growth hormone deficiency doesn't just affect their growth, it can also affect muscle tone, onset of puberty, and even IQ. So you're probably helping a lot more than his height by doing the hormones.

Also, (and here is the carseat tech part of me coming out), their bone age is also very delayed, and that's why we still have DS rear-facing at 5. He's well under the height and weight limits (and actually didn't meet the height minimum until 4.5 anyway) and since his bone age could be more like 2 or 3, we're not taking any chances on forward facing him any time soon.

[Cinder]

If there is an actual growth hormone deficiency, then there are a lot of medical issues that can go along with that (a real deficiency, not just on the low end of normal growth hormone production), but there are some conditions that growth hormones can help with that don't actually have a growth hormone deficiency, in that case, you are just doing it for extra height.

[urchin_grey]

Just to share, here is DS's growth chart. I charted his height and weight last year when he was 4 and I just found it, so I charted it again. (He's probably closer to 34in though because the nurse measured him with his braces on and he's so hard measure anyway.)

height
http://i213.photobucket.com/albums/c...ey/height2.jpg

weight
http://i213.photobucket.com/albums/c...ey/weight2.jpg

[SashaBreeze]

You ladies are right. My comments on the shots came after a long couple of days and I just wasn't thinking straight.
When he was in the hospital and we finally found out that he was going to be ok I was so relieved that I just never asked the questions I should have and went with anything told to me out of shear relief. So I had a moment of panic of worrying that if I was not clear on one thing, maybe I was not clear on ANYTHING.
Please overlook me, stress had gotten the better of me that day.
Thank you all for sharing with me your own journeys with all of this. We live in a very small town and sometimes it is just far to easy to feel all alone with this.

[chiefmir]

I've posted this info on a few growth hormone threads lately, but I just wanted to share with you that my DH is/would have been a pituitary dwarf. He's 39 and was finally diagnosed around 18 months, when he had failed to reach his birth weight until over a year of age! he began growth hormone shots at 4.5 years of age (I believe he was about the size of an average 9 month old at that time). he is now 5'6" tall, and (as he points out) made it to the 5th percentile for adult men (which he actually looked up in med school and was happy to see that this ment he was taller than 95% of women!). He has well above average (likely gifted) intelligence, and is a medical doctor (pediatrician). his associated medical problems are/were midface hypoplasia (corrected as an adult), single central incisor (corrected with orthodontics and bridges until he was an adult, how he has permenant implants), had one or two sinus surgeries, low/non-existant testosterone (though has had NO fertility issues, much to the shock of all his doctors), overweight (may not be totally related), hypothyroid (mild, diagnosed as an adult), high cholesterol, and allergies/asthma (also not related). in the last few years he's had two bad dehydration episodes when he had a fever, leading us to su spect a very slight cortisol problem (though he tested normal throughout life and low-normal two years ago) leading him to take low dose steroids (oral) when he notices that he is getting a fever or stomach virus. I don't know if his level of non-impairment is typical, or if the height he was able to achieve is typical (and he was off growth hormone for a while during the switch to synthetic). but i just wanted to share his story and his wonderful outcome!