Wednesday, February 2, 2011

Aggravated . . . Stressed, Discouraged

Back in January we were supposed to have our PW Clinic appointment in Columbus. I called the day before since I hadn't received a reminder letter like I usually get. Well the Clinic was cancelled because the geneticist was unable to be there. Thank god I didn't find this out the next day after driving 3 and a half hours. Anyways they apologized, whatever, so the February clinic is full, and so we had to be put in the March clinic. Much to my protest since my little guy has gained nearly 10 pounds since we have seen them last.

Back in October before the tonsils were out, the doctor said that if my little guy gained just a pound he would get the higher hgh dosage. (He weighed 29 pounds then) So in November when the doctor called to say he could go back on the hgh, I asked can't they up his dosage of hgh based on his weight at the pediatricians office which was like 31 pounds at that time. She said she checked and that still wouldn't be enough for a dosage increase. We are only on .4 mg of somatropin. We have been on .4mg forever, since he was this emaciated little guy, not the big toddler we have now. So when this January stuff happened, I asked again if we could get a dosage increase - and they said not without seeing the doctor. Yeah ok.

To top it off they didn't understand why such and such surgeon did Isaac's tonsillectomy, when such and such other surgeon normally does PWS kids tonsil surgeries. Really, I guess I don't understand either since it was your office that referred us to that surgeon. I don't know I guess that since Dr. Hardin left it feels like this PW Clinic has well, just fallen to crap. The doctors honestly can't answer your questions about PWS because that isn't their specialty they just came over there after she left to fill in for awhile. Someone was supposed to be hired to replace her but its been the same clueless people for almost a year! I am aggravated just thinking about it all. I am really seriously considering switching to possibly Pittsburgh or I don't know at this point going to FL for this amazing Dr. Miller they speak of.

I just feel like Isaac is falling through the cracks of this Clinic that is basically falling apart. We get absolutely no guidance on supplements. It breaks my heart to see all these other PW moms out there getting recommendations of stuff to try and much much higher doses of hgh on smaller kids. (I know you shouldn't compare kids like this, but I just don't understand it, its not like we have done growth hormone deficiency testing or even metabolic testing to know anything more specific to guide the dosage, its simply done according to his height and weight according to this dr.) I guess I am just more or less really scared right now because Isaac has gained a good deal of weight since his surgery last August (10 lbs!) and our calories have went down.

I've called to see if there are any cancellations for February, but patience is not my forte. Dr. Hardin was so proactive, so inspiring. This place now is just depressing.


Janet Gulley said...

Hang in there and, yea, contact Dr. Miller or Pittsburg now, even just for a back up appointment. If you wait til march, are not satisfied, then you will have to wait to get in elsewhere. You can always cancel.

Sarah said...

Dr. Miller is amazing to talk to. She might be willing to contact your local doctor and suggest the new dose for you. She was willing to do that for us, but then our local doctor was a dick, so we dropped him altogether.

The squeeky wheel gets the oil! Bug them til they cooperate or you find an alternative.

Some doctors just expect kids with PWS to gain weight (aka be overweight), but it's not necessary and certainly avoidable.

Proops said...

Go for it!
My wife contacted Dr. Miller and she was really helpful. You have to get to where the serious research is being done, and those places are few and far between.
What we've found in London is that the top children's hospital is way behind the times on the research, but an endocrinologist has started a multi-disciplinary PWS clinic with nutritionists and other researchers, and that we get much better care there.
Elliot started on growth hormone at 9 months largely because of Dr. Miller's research. He's taking a standard vitamin supplement (Dalivit) and is also taking CQ10, although that's been shown to have only minimal benefit in comparison to human growth hormone.
My experience of medical staff generally is that you need to be interesting. If they can treat you as another statistic they will. If they're really interested in your condition, they'll pay you special attention. So find someone who's really interested in PWS and I'm sure Isaac will benefit.

Andrew,Sally,Megan,Daniel and Lucy said...

So sorry to hear you are having a hard time right now
I know just how you feel,here in the UK there is no great specialist that I can call to get guidance about Lucy and I really have to use my instinct about suppliments ect and information from other pws mums although I currently have Lucy on nothing more than multi vits and ormega 3 and she is doing well so Im guessing for now that enough for her needs
It sounds as though Dr Miller is a great pws dr and if I lived close enough I think I would have Lucy on her patient list and maybe I may even call her from the UK if I need help any time
I was very lucky to find an endo in UK who put Lucy on GH at 4 months old and is very open to my ideas but to be honest I want him to tell me stuff not the other way round
I guess what I am trying to say is you are not alone in feeling like this and with this condition it is so hard to know what to do fro the best as everyone seems to have different advice
I say go with you gut feeling and push for what you know will give you peace of mind and push and push and push till you get it