Busy endo offices--a minor vent

[Traci]

I am so frustrated. We live between two very large cities but have only TWO pediatric endocrine centers--one in each city. Both are overflowing with patients. If we don't make our appt four months in advance, we can't get in to see the dr or the nurse. Faxing logs is a nightmare. The line is busy constantly. Now I find out they are only collecting logs two days a week...so I've been faxing on off days trying to get through. No one has called me back in two weeks!!! I mean, it's not the end of the world or anything--I've managed to adjust ds's basals by myself and he's doing ok, but I sure would like a little professional help here from the experts. His numbers are pretty good for the most part, but what if there were a real problem? We've only been pumping for seven weeks, so while I think I know what the answer to his pattern of post breakfast highs is, I want to make sure I'm not missing something. I've got the right fax number, and when I called to ask them for suggestions (after going through several menu choices to get to the diabetic educators voice line) the line does not accept messages! Arrrrgggghhhhh!

Sorry for the rant. I just had to vent. Continue with your regularly scheduled programming. :o

[sheila]

I feel your pain.

The nearest Ped's Endo is 3 1/2 hours away. They travel up here for a clinic aprroximately every 3 months. I have to make sure we are available for the appts so we don't have to make the long trip to the doctors.

[Adinsmom]

Been there done that. I felt like Adin was an anonymous number when we went to clinic. As far as phone calls or faxes most times they went unanswered or were days too late. We also live 4 hours away from any ped endos or children's hospitals. I know how frustrating and scary it can be so vent away.

I also remember how we would walk out of appointments feeling frustrated and that it was a waste of time. I truly was exasperated and frightened especially since we were newly diagnosed and not even 3 months into this. :( It became apparent that I didn't trust them and their advice. I was reading everything (still do on occasion) I could get my hands on and needed help and guidance. Thank god for this board.

The best thing I have done so far, in Adin's care is find our new Ped Endo. Her office is always friendly, she puts Adin's needs first and within minutes I have answers.

Would your pump rep be able to help or be a good person to bounce some things off as well as the board of course. Could you complain next time you see your Doctor? I think our old Doctor lived in his own little world and didn't see how truly bad it was.

Good Luck.

[wendyc]

Hopefully by the time they are ready for college that our kids won't need to do this, but maybe we should encourage our little ones to become pedi endos or cde's!

I can't believe how they handle things. Don't you have a designated cde? We do, we email our numbers to her, we generally have a response in 24hrs. If it's urgent, I flag the subject line for her.

How frustrating!

[Melon1220]

Hi - we're quite new to this - our 6 yr old son was diagnosed in Jan and has seen the nurse practitioner once...our next appt isn't til Nov! He wants to get the pump so we're considering going to Barbara Davis Center in Denver....Anyone have any experience with them? Also, any suggestions for ped. diab. ctrs/offices in Chicago area? Thank you, thank you for help!

[Mama Belle]

Hi - we're quite new to this - our 6 yr old son was diagnosed in Jan and has seen the nurse practitioner once...our next appt isn't til Nov! He wants to get the pump so we're considering going to Barbara Davis Center in Denver....Anyone have any experience with them? Also, any suggestions for ped. diab. ctrs/offices in Chicago area? Thank you, thank you for help!

Several of us go the the BDC. Emma's parents (EmmasMom and Brensdad) travel from Texas to the BDC. With the BDC you have to make appts pretty far in advance, like I had to call in July to make our appointment for November. However, it is totally worth it. We love them! The whole appointment process runs very smoothly from start to finish. Drs & CDEs always take the time to talk about any issues or help troubleshoot. The Pump Educator is the best! She has diabetes herself and has been pumping for 15 years. I would highly recommend them to anyone.

[Amy C.]

Hopefully by the time they are ready for college that our kids won't need to do this, but maybe we should encourage our little ones to become pedi endos or cde's!

I half way convinced my son that he would have no problem getting a job if he were a pediatric endocrinologist, until he pointed out he would have a problem if a cure were found.

He is still thinking about doing something in medicine.

[Mama Belle]

I half way convinced my son that he would have no problem getting a job if he were a pediatric endocrinologist, until he pointed out he would have a problem if a cure were found.

He is still thinking about doing something in medicine.

Although endos treat many hormonal disorders, not just D. But I get where he was going with that.

[Adinsmom]

I half way convinced my son that he would have no problem getting a job if he were a pediatric endocrinologist, until he pointed out he would have a problem if a cure were found.

LOL. :cwds: A big smooch to your son and his thoughts to God's ears...

[Abby-Dabby-Doo]

Traci~
It sounds like the Ped Endo's aren't very close to you?! The reason why I ask is, are you willing to go a little bit further away to get better care for your son? I ask because sometimes it's only 30 more minutes, which is an hour more both ways, but might be worth it?! Just throwing it out there.

It sounds like your doing wonderful managing, but it would be nice to get reassurance. I know exactly how you feel.

[Traci]

I would drive it, but I am between two major metropolitan areas and there is just one group in one area and one group in the other. Both are totally overwhelmed. The next closest major cities are several hours away. I have poured over our insurance--checking if there were individual practices, but none accept patients younger than sixteen.

On a bright note, we just had his check-up and his A1C was a 6.0!!! I guess we are managing ok. In my delirium over his A1c, I totally forgot to ask about alternate faxing or messaging. I guess I'll catch them in three months.