Adrenal Insufficiency Support Group

We went to our Endo a couple weeks ago. It's been a full year in with him and he did a review of Chances file. The Endo said that since he has only grown a little over 1.5 inches this last year we have to start the tests to find out if we give him growth hormone shots. We did the initial blood work that day (two weeks ago) and it came back with a result that said we now have to do a 4 hour, in hospital, blood work series.

Doc was pretty sure this would happen. He said he was/is fairly certain we will be giving the shots, but he wants to do everything he could to try and avoid it. That's why he gave us the year (to double check the kid's growth pattern).

I expected it, and I know Lora Joy that Landen (sorry if I spelled his name wrong) is on them so I know it isn't a big deal. I'm taking a deep breath and moving forward with my thoughts onto how it will help him... how when he grows a little he'll fit in better with the boys his age. And how doc says the needle is tiny..

That's the updates. I'll probably have a million questions for you ... but I'm saving it all until after we do this hospital workup on Friday.

Just um... the needle is tiny right? Doesn't hurt? Is it auto injector style? I'm really hoping for that, it would make my life so much easier!! My MIL has diabetes and has a tiny needle with the auto injector and it's a very quick painless (mostly) shot...

It's all about perspective I think, for example my mom, who was as hesitant with the idea of growth hormones as I was last year told me that the other day she had this thought: If he grew an inch and a half between age 3 and 4, and then grew the same between age 4 and 5... if he continues that growth curve he'd be just barely over 4 feet tall when he was 16. That made her realize that yeah, shots just might be a helpful thing for him. I love my mom, she's so practical in her thinking

Gwyneth,

Thanks for the update on Chance. I have been wondering how you are doing. It is good that the Endo. gave it time to see what would happen before jumping right into it. Keep posting to let us know how Friday goes. My thoughts and prayers are with you.

Sue

Gwyneth,

Our doctor saw us for a year first, too, before testing for Growth Hormone. Remind me again, how old Chance is.... Landon was 6 when he was diagnosed with both GH and AI.

There are all types of administration techniques out there: there are pens, syringes, there is also a fairly new device called the EASY Pod- we really wanted that for Landon, but our insurance will not cover it.

It was hard on Landon and still is sometimes, but like all his issues with AI, he has learned to deal with it. Plus...other kids think he is so brave for taking shots every night- that lifts him up a little.

Your mom is right! If Landon wouldn't have taken GH, he would be a very, very short man- and that is hard to be in this world. As of right now, they are saying 5'6 or so for him.

We are just teaching Landon that God has made him special because He knew he could handle it and that others would see him and want to be like him. We think he is a very brave and courageous boy. He has been through so much for a 9 year old, but he is strong!!

Keep us updated and I think you have my # if you want to talk after the appointment. I also have a skype account. I talk to another mom through that sometimes since she lives in Austraila.

You are an awesome mom!!

PS> in the past 18 months or so, Landon has grown almost 6 inches. He still is little, but doesn't look so out of place anymore! Also, lacking growth hormone doesn't just affect linear growth, it affects blood sugar regulation and bone density.

Check out this organization: they are wonderful!!! www.magicfoundation.org

Anxious to hear about things...

Lora-Joy

Well the little guy had his stim test done. It took 8 hours in the hospital!! We went in at 8 this morning and they put in an IV and did two blood draws. Then they finally gave him the first medication at around 9:30, and took blood every 30 minutes for the next hour and a half. Then different medication (this one through the iv) and more blood draws till 2.

In the middle of that second batch of blood draws Chance sort of went wonky on us, I think it was the start of a crisis but I could be wrong... He fell asleep, and was very difficult to wake up, he was so sweaty it was like he'd just stepped out of a shower. I mentioned to the nurse how unusual that was and they double checked his blood pressure and sugar. Turns out his bp was down to 60/20 and his blood sugar was all the way down to 31! They quick got us some juice, and food for him, we gave him an extra dose of HC and kept an extra close eye on him until they could get both sets of numbers up to where they should be.

We should have been able to leave at 2 but because of all that stuff we had to stay an extra two hours to make sure he was all the way better.

We wont get the results back from the tests until late next week. I have to say I'm actually "glad" he had a few problems because we got to SEE what it looks like when he starts to go into crisis mode. I mean, I'm assuming that was his problem... soooo tired, a little confused (kept insisting that he was 4 not five and it took him several seconds to tell me what his dads name is etc).

Oh, LoraJoy thank you for the link to the magic foundation, I had that link somewhere last year when we started down this path with the kiddo but somewhere along the way I had forgotten about it. You reminded me about it and I saved it this time

Also that Easy Pod looks amazing!! I sent them a request for more information and I'm keeping my fingers crossed that maybe we'll be lucky enough that our insurance will cover it. It would go a long LONG way to help Chance adjust to yet another medication if he could help give it to himself! Not to mention I would kill to not have to deal with setting the dosage amount every night, and to have that little calendar to keep track of when the last dose was given would ease my overly retentive mind

Gwyneth,

I am sorry Chance and you had to go through so much today. It is good that you were at the hospital for them to monitor him. Is this his second Stim test? I pray for all to settle for you and Chance. Please let us know the results when you can.

Sue

I know what you meant about "glad" it happened in front of the medical professionals, they tend to be under reactive when mom just tells them. VERY Glad he was ok and got to go home.

Hope your tests all have the best possible news.

Take Care

~~~HUGS~~~

Sue, yes and no. We did a stim test for his AI but it wasn't the one that is usually done in the hospital because our insurance had fits about covering it. So yes this is his second stim test, but his first in hospital and his first for growth hormone levels

It was a little funny, almost. The nurse said that Chance blood pressure was low when we brought him in so when it started to be a little lower mid test he watched it instead of reacting to it (it lowering a 'little' bit is normal so he was going off Chance start numbers vs a 'normal' kids start numbers. Which is understandable). The funny part is that the doctor has done several of these tests (our Endo always sends 'his kids' to them to get it done) and she said she's never had a kid have the blood sugar issues Chance had. Almost makes me want to ask the Endo if he could have hypoglycemia on top of everything else *chuckle*

Oh..we are fortunate that our health care system is good about cover things that way. Wow low blood sugar too. It is crazy the things you discover when you are looking for other things.

Sue

WOW! How awful for your poor little guy, but it is nice for the docs to see what goes on, too. ODD, Elaina was first diagnosed with hypoglycemia & that was the reason they put her on hydrocortisone to begin with. (She had gone into a seizure because her sugar was 31 & she was "out of it" for about 3 hours after they got her sugar up & got her in the hospital....I didn't know how "out of it" till they did a lumbar puncture & she said, "OUCH!" & fell back asleep.)

Hope he is doing well now.

Pamela