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Help from My Texas Neighbors & Anyone else!

Discussion in 'Parents of Children with Type 1' started by LoriLee, Apr 18, 2011.

  1. LoriLee

    LoriLee Approved members

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    :)I need some information from any of you that are in the Texas (specifically Houston) area who use the Childrens Hospital in Houston Ped Endo Center..We are working at getting a referal to there, since that is only about a 3.5 hour drive from here. LA has very few (only 2) Ped Endos, within 3 hours of us, and the one we are using is one of them, but after 2nd followup, he appears very distracted, busy, rushed, you name it..Not really wanting to talk about any other insulin options other than NPH/H, and basically telling me to just deal with the highs and lows, and her feeling bad until the they kick in..I know i'm not a doctor but this just seems soo not right to me.. I mean she is only 5!...Her first A1C from diagnosis came in last week at 8.8, which is down from 10.9, but I still feel like I am missing something..We just went through about two weeks of high numbers, where even the H at larger than her normal amounts, might or might not bring it down..But the endo really didnt seem concerned. Just venting, but would love any information on the doctors in Houston! Thanks
     
  2. AlisonKS

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    My son went there when we lived near Houston. Honestly I hated them after awhile, I felt like he was just another number to them. I would never talk to the same doctor so I would have to explain everything over and over again to whomever was on call or whoever I could get an appointment with. A doctor chastised me for using a nutritional scale because it was not accurate, I had to argue to get him back on lantus. I could not find daycare for him to take their classes, they wouldn't let me take him along so there was lots of drama about that. We did see a NP near our house for more appts. before we left and I liked her a lot. When we moved I got his records and some of the things the doctors wrote about me were very rude.
     
  3. somanybakers

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    I'm not in Texas but I remember the NPH/H stuff well from when Lucas was dx as being very stressfull and worrisome. There are other options. I was with a practice that was VERY firm that this is the way it had to be done and I felt so helpless and angry. It did help me to grasp an understanding of how insulin and foods work with and against each other so for that reason I guess it is a good place to start.

    I just wanted to encourage you to continue to seek answers and options that suit you and your child better. Its great that you are able to decide that it does not feel right to you and are able to take action. I hope you find a great Dr to help you soon!
     
  4. LoriLee

    LoriLee Approved members

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    AlisonKS, that is scarey! That is exactly how I feel at the clinic we are going to now in LA, just a number...Ok, so now I'm changing my Question, WHAT ABOUT ANY GOOD PED ENDO IN TEXAS AREA? My preference would be a single doctor to deal with... OR ANY OTHER GOOD CLINICS IN EASTERN TEXAS, DALLAS AREA IS ABOUT 5 HOURS FROM US...But, at this point I would go to the ends of the earth for good care for my daughter!:eek:
     
  5. Amy C.

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    Wait patiently for a Houston person to chime in. I live in Austin and don't know the Houston endos at all.
     
  6. manda81

    manda81 Approved members

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    It's quite a trip, but I can HUGELY recommend Cook Children's Endo's in Ft. Worth. We had a hard time choosing one because they were all really great, but have been very happy with the one we did choose. All of the staff/CDE's/NP's ... so great. I have zero complaints.
     
  7. LoriLee

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    Thanks Amy, I will try...ha ha!
     
  8. 5kids4me

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    Cook children's is where Josh was at DX. Very good docs and we loved the CDEs and nurses.
     
  9. txmom

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    We use an endo at the Dallas Children's hospital and we love her. We saw several when we were in the hospital (one who was a diabetic and using a pump), the other is the head of pediatric endocrinology.

    We went with the head of the department, she is quite young, very informative (including the time my H came to see if the doctor would advise against trips to Chipotle with his friends)....

    Downside - she only sees patients on Thursdays, but she spends a LOT of time with us each visit (45 minutes ). She came to several of Grant's hockey practices to help figure out how to manage his BG when he plays.

    5 hours is a long way to drive but if you need one in Dallas I highly recommend Children's.

    Sorry you are having such a tough time finding a good solution closer to home.
     
  10. Michelle'sMom

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    Another vote for Cook Childrens'.
     
  11. Caydens_Mommy

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    I have no experience with the Houston area Endo's, hopefully someone can tell you more about those.. Cayden was DX'd at Children's in Dallas and we were not really pleased with the time or service we got there, so upon getting out of the hospital and getting home we looked at Scott and White in Temple, we have been there the last 3 years and we LOVE it. There are only 2 endo's but you choose the one you want to see and the only time you ever deal with the other is if you call the emergency line and they are the one on call, so not very often.. That I REALLY like, he knows his patients!
     
  12. Brynn

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    I was going to vote for Cooks. I work with them in the summer at the camp they sponser. WONDERFUL group.
     
  13. MOM to KELLSE

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    another vote for cook children's in Ft worth!!!!
     
  14. twicker1

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    We do use Texas Children's Hospital in Houston. I love it. I don't get a whole lot of help from them outside of our appointments, but that is my decision. I know they will help if you need it.

    Our "official" endo is Sheila Gunn, and our NP is Robin Klenk. I love them both. They are realistic in D care, and in no way judgemental. I know there are quite a few endos in the clinic, but I really don't know how many. How it usually works is we go every three months. One appointment out of the year is with the actual endo, but Robin is just as capable as Dr. Gunn.

    The only "downside", if you call it that, is that they are not big advocates for the CGMs. The clinic as a whole, that is. I'm not sure what their official objection is to them, but at this point, we don't have extra "real estate" to work with anyway.

    It is great to have his A1C done right there at the beginning of the appointment and know it when the doctor walks in the room. Other labs done yearly. I never wait long and hardly have time to even fill out the paperwork they give me. We may wait 5-10 minutes in the room, but then I've NEVER had either one of them cut the appointment short if we were still working on a solution.

    Hope this helps!
     
  15. sarahconnormom

    sarahconnormom Approved members

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    We also use Texas Children's Hospital and have been very happy so far. I have never had an issue getting help when I needed it. Right now one of the CDE's andour Medtronic rep are working overtime to get our insurance to approve Connor's pump upgrade a year early so we can get a larger reservoir.

    We started off seeing Dr. Gunn but now see Dr. Balazs. I like Dr. Gunn fine but Dr. Balazs and I mesh a bit better and she is more on the same page as I am about how I want to manage things. To me she truly gets the ins and outs of pumping better than Dr. Gunn did. It is true that TCH does not like to prescribe the CGM. That has to do with the head of the clinic notliking them. However, Dr. Balazs did prescribe one for us. It is sitting on my kitchen table in the box. We are waiting to see if insurance approves the Revel upgrade before we start.

    I love that we seldom wait more than a few minutes and they do the A1C right there and we have the results within a few minutes. Connor loves to watch the machine countdown to zero so he can see what his A1C is. It is a big deal to him and the nurse gets a kick out of how excited he gets to see the number.

    I have also heard good things about the Endo dept. at Hermann Children's Hospital but have no personal experience.
     
  16. ShelbysMom

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    We use TCH in Houston. We live in Orange, TX and there is really no other ped endo available in the area so we drive 1.5 - 2 hours every 3 months. I would say that TCH is getting better. They are prescribing CGM's now which has been wonderful. The Dr we officially have is Dr. Chi, who I wasn't real impressed with, but honestly our CNP does the work, Suzanne Wheat. She is really upbeat, positive, non-judegemental, super encouraging and just a nice person. We like her a lot. I have been able to communicate some with her outside of our appts, but we pretty much do everything on our own. I've rarely called the office in between appts.
    You do feel a little like just a number in their system. That, I'm still getting used to........
     

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