Josh's Update

[Guest guest]

Hi,

Josh got the okay to reduce his prednisone when we saw his doctor on Dec. 21. Said to begin as soon as he was better from the cold he had so we waited till after xmas. First day, Dec 28th, was fine. Next day was okay too. We were both happy he'd be starting the New Year on just 3mgs : ) He wanted to sleep late on the Dec. 31st which I agreed was a good thing ... since we had plans to be up past midnight celebrating the New Year. He ate, took his meds, went back to sleep. When he came downstairs later with no shirt on, the old familiar rash was covering his chest and sides. Checked his legs and sure enough, there too. On his thighs. Didn't panic. To be expected, right? We'd talked about how it might be hard for a bit till his body adjusted. He was on winter break, wanting to get the most playing time out of each day, but found himself unable to start the day on the right foot (Literally, and figuratively!).

His friends would call for him, ask him to come out to play, but he wasn't feeling very playful. I figured it was a good thing we lowered when we did, so he could rest as much as he needed, adjust before needing to go back to school, but it didn't get much better. The gory details: he got two sore nodules/bumps below his right ankle, which he is sure have always been there but just hadn't been hurting him. (They were very visible and I'm sure I would've noticed them if they were that big in recent weeks.) Said he had pain in his wrists, right elbow, shoulders, neck, left hip area, left knee. Both feet were hurting, right ankle looked swollen, and he was limping again in both the mornings and by the end of the day. He fell asleep early and still wasn't quite ready for action in the morning (or in the p.m., for that matter). The rash was on both thighs and his ribs/chest area, when he woke up in the mornings and again, in the evenings. On Jan 12th I relented. Started giving him 4 mgs of prednisone again.

On Jan 18th we flew to Oahu to see the endocrinologist. Very strange visit. Confusing. When we got there he said he thought was ALREADY taking growth hormone. Nope. We were waiting for some kind of sign from him. I told him I thought we needed a prescription for it, as well as a means of obtaining it, since Josh's insurance had denied coverage. I reminded him that upon leaving after our last visit he said he was oing to write up the results from the dexascan, bone age xrays, and his observations from the physical exam ... and put together a physician's report to send to Genentech, since I'd been in touch with them about their patient assistance program and had sent in all the paperwork they mailed me. All we needed was a followup visit with the endocrinologist before they'd determine if we were eligible. On our side, back in Maui, we were to have the blood tests he ordered (measuring growth hormone deficiency) and have the results forwarded to him, so he could send that with his report to Genentech. We did that. In September.

Needless to say, I didn't really know where to begin. Talk about mis-communication. How could the signals get so crossed? He explained that care of outer island children is much harder for his office than for the children who live on Oahu. I said I couldn't see why. If we have an appt, we will be here. If you order testing, we will have it done. I told him it WAS a bit un-nerving to call and leave two clear and concise messages on his office answering machine, stating the need to make an appt for a follow-up exam, and then not have the calls returned (when I've clearly stated phone number, name, child's name, date of birth, etc.) but that was okay because I did finally speak with a real person on the third try ... and the appt was set. He apologized for that and then ruffled through his file, reading to us excerpts of some letters he's written on our behalf to the insurance company and a fax he sent to Josh's pediatrician. I said what I wanted to know was how we go about either getting approval from insurance (which he had mixed messages about. First he says he thought they finally approved GH after a few denials and then he said he'd have to write to them again. No-one wrote or called to inform me of the reversal, if there actually was one) or finding out if we can qualify for the Genentech PA program. So we got on with the exam. Josh had a small increase in height since our last visit 5 months earlier. He's now 4 feet 1. No physical signs of pubertal changes, yet. He clarified that since 's bone age is younger than his chronological age, he may be able to have growth continue beyond what is usually considered the normal period. He said it was too soon to have another bone age test done but wanted Josh to have the dexascan. Josh was ushered off to the back room while Kayla and I sat in the waiting room.

All of a sudden, lights are flashing, dizzying strobe effect lights, and alarms are sounding. The hallway outside is getting very busy. People looking around, talking amongst themselves. Curious, but no-one in the doctor's office seems the least bit concerned. Except for me and Kayla. I said, excuse me .... is there a problem? The alarms are going off. People seem to be evacuating the building. Should we be leaving? "Oh, don't worry. Everything's fine." Hmmm ... I asked if the alarm was broken, thinking maybe this happens all the time and that's why no-one's blinking an eye. "Oh, no. It should work." Okay, well why don't you call downstairs then and find out what's going on? "Okay. I'll try. Oh. It's busy." Kayla was getting nervous. She's thinking World Trade Center. We don't have any buildings taller than 4 stories near us but here, we're on the 16th floor. Six people I knew perished at the Trade Center. She's right. I've got to get Josh and we'll leave. We can come back later. Maybe? I went in the back just as Josh was stepping off the machine. I said, Josh put on your shoes, we've got to go. The fire alarm is on and everyone's leaving the building. I told the doctor (the endoctinologist's son) we'd be back and then we joined the crowds in the hallway. Then, there's the doctor. Calling me back. Waving the report in his hand. Wanting to go over the results right there in the hallway! It's funny now, thinking back, but Kayla was on the verge of hysteria at the time. I turned back, told him we really should be going. He says, bearly audible amidst the alarms, "But look! There's actually been some improvement in the bone density mass in 's hips. Spine is the same but that's okay." Kayla, desperate, near tears now, is pleading. Mom! We have to go now! I told the doctor to call me in Maui if we needed to discuss anything else and then said goodbye. We joined the others, scrambling down the 16 flights of stairs, outdoors to safety. Sirens getting louder, closer. Police and fire trucks arriving. We headed to the nearby mall, thinking whatever it was, we'd hear about it on the news. Never did, though.

Josh was still taking the 4mgs of prednisone, still having some minor arthritis pain. His feet and ankles, in particular, hurt often but at least the rash stopped. Seemed like things were settling down again. From Jan 24th thru the 31st I gave him 3.5mgs a day. We had some 2.5 tablets left over from last time. Today's his 4th day taking 3 mgs. It's also the first day he's missed school in a while. This morning he said he didn't feel good, had a stomache ache. That's not common for him. He had the rash again too on his chest and thighs. As I type, all that's left is some splotchy rash patterns down by his knees. He's been taking it easy, reading on the couch. Slowly feeling better, as the day progresses.

Aloha,

Georgina

[Guest guest]

Georgina-

Your experience at the Dr.'s office seems really bizarre. You'll have to let us know if you ever figure out what happened. Josh will be in my prayers as he works through these little "setbacks".

Diane (, 2, pauci)

[Guest guest]

Georgina,

What an experience that must have been. Hopefully by now you have it straightened out with the endocrinologist. Abbie read your email and was shocked at Josh's height. I explained to her that was the difference between getting sick at 6 and getting sick at 10. She has quite a bit of empathy for him, and hopes that things will start to go better soon. As do I.

That was quite a shock about the bookbag weight. Abbie had a nice one that was stolen several months ago, so she is currently back to the backpack. Along with her violin, she really struggles some days, and often wants to be picked up instead of riding the bus. Especially in the ice.

Let us know how the struggle ends up.

Christy

[Guest guest]

Hi Diane,

Bizarre ... is almost an understatement. Like was saying, how sometimes it seems like they're reading from someone else's chart? Josh said it seemed like the doctor knew him, remembered him, but that he seemed very confused. He's the only doctor I've ever had this sort of situation with. Ever. I should ask for a copies of all the records he has in 's chart. That may be the only way to make sense of it all. He may be the sort of doctor who doesn't like to release that information to a patient but .... we do have the right. I'd like to see this through, at least until I sort out eligibility for the Genentech Patient Assistance Program option.

Somehow, though, my intuition tells me that if Josh was really meant to try growth hormone therapy things would have happened more easily than this. In one sentence the doctors' telling us he thought insurance had approved GH ... a few minutes later he's telling us that he'll write to them again seeking approval (not because of short stature but because of 's growth hormone deficiency levels) but it's unlikely they'll approve it because of how much Josh has grown in the recent past. Even though he's still way off the charts. Very confusing.

Take care,

Georgina

Your experience at the Dr.'s office seems really bizarre. You'll have to let us know if you ever figure out what happened. Josh will be in my prayers as he works through these little "setbacks". Diane (, 2, pauci)

[Guest guest]

Hi Christy,

Thanks for your good thoughts. And thank you to Abbie, as well. I'll let know that she says hello. He was moving a little slowly this morning but he said he was ready for school. Would take a nap when he got home if he needed one. With the new semester started, he has PE class first thing in the morning. Which may or may not be a good thing. Either help him limber up or discourage him when he's already having morning difficulties. I wrote a note to the teacher the first day, explaining that he may very well do just fine but that on some days he may not be able to participate as actively as others. Self-limiting, unless we face something where we'll need a doctor's note. Also mentioned that sometimes he may try to overcompensate, to keep up, and that sometimes backfires. Day by day. We'll see what happens.

About the height, it's amazing to note people's differing perceptions. Josh is really excited right now, to be OVER 4 feet tall. For the longest time he stayed at 3 feet 10 inches. Years. Now that he's reached 4 feet+ he's feeling on top of the world : ) Kayla, Josh's younger sister, was growing like a weed for a while but I think she's slowing down some, now.

Aloha,

Georgina

What an experience that must have been. Hopefully by now you have it straightened out with the endocrinologist. Abbie read your email and was shocked at Josh's height. I explained to her that was the difference between getting sick at 6 and getting sick at 10. She has quite a bit of empathy for him, and hopes that things will start to go better soon. As do I.That was quite a shock about the bookbag weight. Abbie had a nice one that was stolen several months ago, so she is currently back to the backpack. Along with her violin, she really struggles some days, and often wants to be picked up instead of riding the bus. Especially in the ice.Let us know how the struggle ends up.Christy

[Guest guest]

Dear Georgina,

Oh my! What a time you all had! I'm glad nothing serious happened while

you were in the building! I hope Josh gets to feeling better soon. I

know how frustrating it gets with some drs. (I'm dealing with one now

with my other daughter 's asthma.) Will keep Josh in our prayers.

and Kate--7 severe poly and AVN