I'm mid freak-out about dd's health. Please only come in if you're gentle...(long)

[Jean in Newcastle]

Before you go hog-wild with exercise (which will be an important part of her treatment) you really really need to find out if it is diabetes or pre diabetes or cushings. If she is diabetic, and her body is used to really high bloodsugar levels (as the test results you quoted suggest) then if her bloodsugar lowers too much, she can get into serious trouble. You really need to understand how that works to do it safely. If she has cushings there are other considerations on how to exercise safely. No matter what, there are going to have to be some lifestyle changes to help improve her health but you really really need the advice of an endo on what is really going on and how to make those changes safely.

[Forget-Me-Not]

And lastly, my question...

Since the labs were a precursor done according to the protocol requested by the ped. endo., would they not have included whatever was needed to diagnose Cushings? (Okay, I just went and Googled, and read a bit about Cushing's, and I see that the testing required probably could not have been accomplished by a single blood draw, right?

 

No, Cushing's can't be tested for with a single blood draw. It involves taking different doses of steroids over several days and having blood drawn 3 or 4 times.

 

Before you go hog-wild with exercise (which will be an important part of her treatment) you really really need to find out if it is diabetes or pre diabetes or cushings.

 

Yes, THIS.

 

I hope your appt went well today!

[Ame E.]

Sounds like you have two issues: One is hemoglobin.. the other is hemoglobin A1c.

 

It sounds like your daughter's hemoglobin level was off... If she had an A1c of 20, she'd be dead...

 

Here are the normal hemoglobin ranges:

Children: 11-13 gm/dl

 

Adult males: 14-18 gm/dl

 

Adult women: 12-16 gm/dl

 

Older dd (14yo) has responded well to all of this, and has lost over 30 pounds in the last 6 months. Younger dd (12yo) is just not getting there. She has some other physical symptoms that made me wonder if there were another underlying problem. Dark discolored skin around her neck, slight {gulp} buffalo hump, and pretty extreme weight gain over the past couple of years. Pediatrician ordered fasting tests which showed no thyroid issues, low cholesterol, but increased Hemo A1C (?) Do I have that right? They told me the level should be way under 17, but dd is at 20. I have no idea quite what those numbers mean, but I'm told that's very *very bad*.

 

After the lab results arrived, the doc wanted a follow-up appointment with me and dd to discuss nutrition & fitness. I haven't booked an appointment yet, because I'm pretty sure that it won't be useful. We know the stuff to do, and we're doing our darndest to do it. More guilt for her is *not* the answer, nor, I think, is me watching her every second and forcing control over every action of her body. I understand my responsibility to keep her healthy, but I want her mentally healthy, not just physically healthy. I'm trying to walk that line. We will redouble our efforts. Together. Nicely, without recrimination, and with every bit of effort we both can muster.

 

the guilt thing does not work... BUT you need to find out EXACTLY what is wrong with her so you can work on it together... Also, if you are going to a local guy who is not a specialist.. or a really small town hospital thing, think about going to a major medical center somewhere where they specialize in whatever is wrong..

 

In other words, you need a diagnosis before you can get a treatment..

 

the food thing should not be a moral issue. She/you both should come up with an eating plan that she likes, helps her be healthy, and that she can stick to..without it being a big deal..the scary part about illness is not feeling in control of it. With more information, you will be able to make a better choice... and see what your options are..

[Perry]

Sounds like you have two issues: One is hemoglobin.. the other is hemoglobin A1c.

 

It sounds like your daughter's hemoglobin level was off... If she had an A1c of 20, she'd be dead...

:confused:

I don't see anything in her post about hemoglobin.

[Ame E.]

:confused:

I don't see anything in her post about hemoglobin.

 

The numbers she posted (20) did not make sense for a hemoglobin A1c.

Here are the ranges...

 

A1c(%) Mean blood sugar (mg/dl)

6 135

7 170

8 205

9 240

10 275

11 310

12 345

 

the "20" number sounded less out of range for hemoglobin.. that's why I posted that... If the daughter did have a hemoglobin A1C of 20, she'd be started on insulin right away, and possibly hospitalized for ketoacidosis... (I'm a type I diabetic). Anyway, if my post was confusing, I am sorry... trying to help in my own way.

Edited August 17, 2010 by Ame E.

[mhg]

Let me add some clarification to my earlier post (I knew I was typing too late to be clear).

Firstly, when you described your daughter's bodily habitus, it made me think of common underlying causes. I knew that with a clear/apparent hyperglycemia/diabetes issue that her doctors are SURE to monitor the routine body systems that could be affected by diabetes.

They're sure to check kidney and the MAIN systems that could potentially be affected.

 

I went the PCOS and Cushing's route as these are associated with the signs you described. I felt like you needed to discuss them as these are sometimes forgotten and can potentially be off the doc's list of potential underlying cause (Cushing's) and/or secondary effects (PCOS).

 

It's common for doctor to forget about the reproductive esp with her being only 12. But we can't forget to protect ovarian function. Again, uncontrolled diabetes can damage ovarian function and cause production of excessive testosterone and all other reproductive hormonal imbalances. She may not have even started having periods yet so they may not think GYN at all. And, they almost certainly aren't thinking of fertility (preserving it) in a mere 12 year old, but NOW is the very time to start making sure the ovary is normal and staying this way as it can damage the ovarian lining and lead to impaired ovulation in the future.

 

Cushing's can show up as the very symptoms she's having so it's worth talking over with the doc and having it excluded. The PCOS again is NOT a primary cause of the sugar issues; the PCOS would be SECONDARY (caused by) the sugar problem.

 

Another person mentioned not doing Eat to Live right off and I'm glad she mentioned this as she's absolutely right. I'd buy the ETL audio CDs and begin listening to them asap (you and spouse) and to STUDY these with the goal of beginning it in a few weeks once you understand the WHY. Once (and if) you're SOLD on the WHY, then you'll have the strong motivation to begin this lifestyle (which is really quite easy after the first 2 or 3 weeks). But, I PROMISE you this. If you and your family do it (eat as it directs) then you'll ALL reach and permanently MAINTAIN your ideal body weights. I can't promise that your daughter won't be diabetic as the status of her islet cells (the cells in pancreas that produce insulin) is something that will be determined in the near future. But, only by loosing ALL excess body weight will you accurately be able to assess your body's ABILITY to secrete insulin and utilize glucose normally. ETL chapter on diabetes will explain the physiology of why (WAY too long to explain here). The previous poster is right on that you need to comply with the dietician's recommendations to get this sugar down ASAP. You can't WAIT on starting ETL. ETL would be my goal and I'd try to begin it asap, but you HAVE to listen to it and absorb it before you can launch it.

 

Take a deep breath and take it day by day. It's clear that you love your baby and that LOVE for what's best for her will give you the drive to help her thrive and overcome this!

 

Take care!

Edited August 18, 2010 by mhg

[Perry]

Do I have that right? They told me the level should be way under 17, but dd is at 20. I have no idea quite what those numbers mean, but I'm told that's very *very bad*.

 

After the lab results arrived, the doc wanted a follow-up appointment with me and dd to discuss nutrition & fitness.

 

The numbers she posted (20) did not make sense for a hemoglobin A1c.

Here are the ranges...

 

 

the "20" number sounded less out of range for hemoglobin.. that's why I posted that... If the daughter did have a hemoglobin A1C of 20, she'd be started on insulin right away, and possibly hospitalized for ketoacidosis... (I'm a type I diabetic). Anyway, if my post was confusing, I am sorry... trying to help in my own way.

 

I see what you're saying, but a hemoglobin of 20 would be bizarre in a 12 year old, and it wouldn't result in the doctor suggesting they discuss nutrition and fitness.

 

It doesn't make sense for either of those tests.

[IdahoHomeschooler]

I would ask about PCOS. Also, look into the South Beach Diet, which can be helpful for diabetics, pre-diabetics, insulin resistance, PCOS, and others.

[Carol in Cal.]

One thing to add--I have a family member who contracted childhood diabetes when he was about 7. Every year his family drives 6 hours to visit a pediatric endocrinologist. The treatment of diabetes is markedly different for children than for adults. The normal ranges are different, the parameters governing downside risks of excursions are completely different, the variability is different, and the control strategies are different. For instance, because brain development is damaged by low sugar excursions, it is not uncommon to 'center' a child's blood sugar a bit higher than that of an adult, and to focus much more strictly on preventing low side blood sugar excursions.

 

It is really, really important to make sure that you get to a ped endo at some point fairly soon. Start with the endo if you need to, but get to that ped one. This is a very dynamic field, and you need someone who is really on the ball and watching the current findings closely to get the best possible outcomes for your DD.

[mum]

I can recommend a book called "Feed your child with love and good sense" by Ellyn Satter. She's a dietician and a family therapist, so she talks of the nutrition and the behaviors of eating. I found it really helpful with my dd's eating behavior. I think that she also talks about some of the medical issues, diabetes, etc, and she has several other books too.

[Julie in CA]

You know, as I replied in some other posts, I'm absolutely positive I didn't get the number right, or misunderstood what was being said. I needed the overnight to sleep on it, and today I'm feeling more purposeful. Dd and I went grocery shopping today and had a more serious talk about sugar/nutrition. It was productive, I think. Tomorrow morning is the appointment, so I'll know more then. Until then, I'm assuming I got something *way wrong*.

[abbeyej]

...Tomorrow morning is the appointment, so I'll know more then...

 

You'll have a lot of people thinking about you and praying for you. I hope it goes smoothly and the doctor is able to allay some of your immediate concerns, offer some helpful and non-punitive short-term measures, and get you on your way towards meeting with a pediatric endocrinologist...

[jazzyfizzle]

The PCOS again is NOT a primary cause of the sugar issues; the PCOS would be SECONDARY (caused by) the sugar problem.

 

\QUOTE]

 

 

I am VERY interested to hear details about this information.