Ped endo appt tomorrow morning *u/d in #3* :(

[DoulaVallere]

We have our appt with the pediatric endocrinologist tomorrow morning. We had all our blood work done a couple of weeks ago, and the bone age x-ray last week. We got to take the CD of the x-ray home and DH and I looked up comparitive bone age x-rays and compared our son's to them and from what we can tell (DH is an MD, but not a radiologist...so who knows) it looks like our son is behind on bone age by at least 6 months if not more. That bodes well...we hope that means that if all the blood work came back ok they will just say "Constitutional Growth Delay" and we'll be done.

Anywho, I'm nervous that something else might be going on, but less so now that I've seen the x-ray. I'll update after our appt tomorrow.

[Cinder]

Thinking about you, I hope you get the best possible news tomorrow!

[DoulaVallere]

So, bad news. The endo says he "wouldn't be surprised at all" if he's growth hormone deficient. His IGF levels were 2 standard deviations below normal, his bone age is somewhere between that of a 14-18mo old, he's the size of an average 22 mo old (he's 31mo old), and the doc confirmed that he has the midface hypoplasia that I thought he has.

So we go to the hospital in August for the 4 hour blood draw where they give him meds to induce growth hormone release and test every few min to see where his levels are at. If they are below 10 mcg/DL (I think that was the amnt) then he will officially be diagnosed as GHD and we'll have an MRI to check his pituitary. Then we'll be looking at shots daily till puberty at $11,000 per year, and shots daily during puberty at about $100,000 per year.

We had been planning to go to Australia in January for Dh to fill a 1 year contract, but if we get this diagnosis I doubt we'll be able to go...an expensive preexisting condition like this will likely revoke our visas, not to mention our inability to buy insurance. DH will likely have to work a state job from now on to get insurance for us. At least DS will be through with the shots by the time HE has to worry about buying insurance. I guess that would be the silver lining.

I know it's not "for sure" yet, but I'm totally devistated right now and the thought of giving my baby shots every day for the next...what? 16-18 years? And we've been so excited about Australia. I just want to crawl in a hole.

[2boyzmama]

Oh Vallere, I'm sorry!!

I don't know whether this will effect your move...is your husband being sponsored by someone? I mean his company, a hospital, a med group of some sort? If so, there might not be as big a deal. Different situation, I know, but we are/were military, and when we stationed overseas (Japan), we did have to have a medical clearance but it was just to ensure that the appropriate specialists were available if needed. There were kids and adults on the military base with all kinds of special needs, and the military medical group and Japanese medical groups cared for them.

Anyway, I hope it works out for you!!

From a practical standpoint...I've read that the injections are nearly painless, and that the actual giving of the injections is usually the least of the issues, once the family gets accustomed to it. I've read that with little ones, you can do it when they're sleeping.

Anyway...I hope the testing goes smoothly in August, utilize Child Life to make it easier on your little one!!!

[DoulaVallere]

DH would be going in a locum tenens program, which is essentially a "work abroad" type thing where he will fill a physician slot at a hospital that needs doctors. So it's a totally private thing, not military or anything like that. I guess it will come down to just how bad they need a doctor in that position...maybe if they REALLY need him (or just REALLY want him) they can pull some strings? We won't know for a while...he is going to try to talk to the doctors there about it and see what we can do.

[BookGoddess]

I'm sorry it's not the news you were hoping for.

Will the cost of the shots be covered by your existing insurance? Is that something medical insurance will typically cover?

I understand the hesitation about giving shots. Once I used to be that way too. However, I have to give my daughter a shot of methyl B12 every 3 days. It's a long story. Anyway, I've been doing it for a while and I do it while she's asleep. Once you get the hang of it, it's really quick. She sleeps through the shot. And if your son is going to be receiving these growth hormone shots for many years, at some point, he will be able to give himself the shot, won't he?

[*LoveBugMama*]

[DoulaVallere]

Originally Posted by BookGoddess

I'm sorry it's not the news you were hoping for.

Will the cost of the shots be covered by your existing insurance? Is that something medical insurance will typically cover?

I understand the hesitation about giving shots. Once I used to be that way too. However, I have to give my daughter a shot of methyl B12 every 3 days. It's a long story. Anyway, I've been doing it for a while and I do it while she's asleep. Once you get the hang of it, it's really quick. She sleeps through the shot. And if your son is going to be receiving these growth hormone shots for many years, at some point, he will be able to give himself the shot, won't he?

Our current insurance will, it is through DH's work. But his fellowship ends in Nov, so we'll have to get our own insurance after that. Esp if, by some miracle, we still can go to Australia.

I keep telling myself that it could be so. much. worse....that there are TONS of parents who would LOVE to just have to give their kid a shot every day to have an otherwise typical kid. But still...it just hurts me to think about having to hurt my baby, even for his own good. And yes, eventually he would be old enough to do it himself, but he's only 2.5 now, so that will be a long time coming. I guess I'm just mourning the idea of "normal" right now. It doesn't help that I'm 36 weeks pregnant, hormonal, sleep deprived, etc.

[Cinder]

Originally Posted by DoulaVallere

So, bad news. The endo says he "wouldn't be surprised at all" if he's growth hormone deficient. His IGF levels were 2 standard deviations below normal, his bone age is somewhere between that of a 14-18mo old, he's the size of an average 22 mo old (he's 31mo old), and the doc confirmed that he has the midface hypoplasia that I thought he has.

So we go to the hospital in August for the 4 hour blood draw where they give him meds to induce growth hormone release and test every few min to see where his levels are at. If they are below 10 mcg/DL (I think that was the amnt) then he will officially be diagnosed as GHD and we'll have an MRI to check his pituitary. Then we'll be looking at shots daily till puberty at $11,000 per year, and shots daily during puberty at about $100,000 per year.

We had been planning to go to Australia in January for Dh to fill a 1 year contract, but if we get this diagnosis I doubt we'll be able to go...an expensive preexisting condition like this will likely revoke our visas, not to mention our inability to buy insurance. DH will likely have to work a state job from now on to get insurance for us. At least DS will be through with the shots by the time HE has to worry about buying insurance. I guess that would be the silver lining.

I know it's not "for sure" yet, but I'm totally devistated right now and the thought of giving my baby shots every day for the next...what? 16-18 years? And we've been so excited about Australia. I just want to crawl in a hole.

Wow...River was just diagnosed with a growth hormone deficiency, and we were told that starting shots at 2 (the earliest they will do them) or waiting till right before puberty really has no difference, no one suggested daily shots for years to us! We are still waiting to find out if there is a cause for it other than just low growth hormones, cause some disorders require shots at the exact right stage of development, and others growth hormones have never been proven to help with.

[chiefmir]

My DH is growth hormone deficient (congenital pituitary deformity) and also had mid-face hypoplasia (he had maxillary advancement during med school or some time near there). He's been on growth hormone replacement for most of his life (starting around 4 since it took so much longer to diagnose back then) except for a brief time when the switch was being made from natural to synthetic growth hormone. the good news is that he DOES find the shots nearly painless-- a tiny, TINY needle and he uses a pen for injections so the dosing is very, very easy. He still takes a TINY does as an adult as there are related health benefits...luckily, insurance covers it. I hope that the process is easy on your DS.

[DoulaVallere]

Originally Posted by Cinder

Wow...River was just diagnosed with a growth hormone deficiency, and we were told that starting shots at 2 (the earliest they will do them) or waiting till right before puberty really has no difference, no one suggested daily shots for years to us! We are still waiting to find out if there is a cause for it other than just low growth hormones, cause some disorders require shots at the exact right stage of development, and others growth hormones have never been proven to help with.

I've been talking to someone at the MAGIC foundation and that is not the impression I got at ALL. From what they said, if there is a GH deficit, you want to start them as soon as possible so that 1) they can catch up to typical height asap as well as have more time to reach their potential height, and 2) because the longer they go without treatment the higher the likelyhood of them having heart/bone/reproductive/etc issues because growth hormone affects so many things in the body, not just height.