Tuesday, September 28, 2010

Freaking out a little! A1C -- Open and Honest post! Oh yea - and a little hurt too!

At our walk on Saturday we hooked up with the OmniPod staff as well as Nate's CDE, Mrs. Wonderful.  So helpful in so many ways - - Nate's bg when we arrived was HIGH (that what the PDM told me - HIGH!!).  So, it was nice to have his CDE and the OmniPod reps to help me through that little rough patch.  :)

Side note:  I've probably mentioned how much I love her (Nate's CDE) on my blog but I've actually meant to dedicate an entire post to her and her wonderfulness but I just haven't had a chance.  I also have never asked her if I can use her name on my blog so I won't for today --- just in case.

Back to the story - We ran into Mrs. W at the OmniPod booth and she had some exciting news for us!  Nate's a1c had dropped again!!  She was excited to give us the news and we were excited that his a1c is now 7.3 and his alkaline phosphatase is back in range (yea - remember that Benign Transient Hyperphosphatasemia post).

All good news!  

Now for the freaking out & Open and Honest.
Here are Nate's lab results.  This is me opening up to you in hopes that you can help me ---
Are you ready ---- here is is . . . The good, the bad and the very ugly!

        Labs Received(Specimen 100126782) 09/22/10 05:03 PM                     
                             Lab Results                                         

Code          Test          Result       Flag          Unit          Range       
HBA1C         Hemoglobin    7.3          High          HBA1C         3.90-6.0    
CH8/HEPLIP    BASIC         XXXXXXXX                   CH8/HEPLIP                
NA            Sodium        141                        NA            135-148     
K             Potassium     3.9                        K             3.5-5.3     
CL            Chloride      105                        CL            95-110      
CO2           Bicarbonate   25                         CO2           22-31       
GLU           Glucose       98                         GLU           60-100      
BUN           BUN           14.0                       BUN           6-23        
CREA          Creatinine    0.3          Low           CREA          0.5-1.4     
ALB           Albumin       4.6                        ALB           3.4-5.0     
CA            Calcium       10.2                       CA            8.5-10.5    
TBIL          Total         0.2                        TBIL          0.0-1.2     
DBIL          Direct        0.0                        DBIL          0.0-0.3     
SGOT          SGOT (AST)    51           High          SGOT          0-37        
SGPT          SGPT (ALT)    26                         SGPT          0-40        
ALP           Alkaline      305          High          ALP           39-117      
CHOL          Cholesterol   146                        CHOL          < 200       
TRIG          Triglyceride  388          High          TRIG          < 150       
HDL           HDL -         25           Low           HDL           > 40        
LDL           LDL -         43                         LDL           < 130       
C/HDL         Cholesterol/H 5.8          High          C/HDL         0.0-5.0     
T4/T3U/TSH    T4 / T3 U /   XXXXXXXX                   T4/T3U/TSH                
              TSH / FTI                                                          
T4            T-4           7.0                        T4            4.5-12.5    
T3U           T-3 Uptake    29.7                       T3U           25-35       
TSH           TSH           1.9                        TSH           0.30-4.50   
T7            T-7 (FTI)     2.08                       T7            1.20-4.30         

So,  there it is.  Pretty freaking horrible.  WTH is causing this?

For the record - Nate NEVER had a full blood work-up at Children's Hospital.  Our new practice does it every 3-months.  It's not fun but clearly the information is invaluable.

Here is the note that was attached to the lab results:

The labs show the alkaline phos level has dropped to the level it would be for a normal growing child!!!!
that is great!!

A1C 7.3---better!

What is very surprising is the Triglycerides are very high.  HDL is very low.
That is likely a hereditary problem. 
thyroid fine
We really want you guys to work with Mrs. Wonderful on dropping the level of simple carbs Nathan is eating.
That should help drop the triglycerides.

The 1st thing  I did was call the office to make an appointment with Mrs. W but as most of you know our insurance for Nate runs out on Thursday.  Getting into see someone so wonderful is not that easy.  She's out this week.  UGH!  

So, I texted Mrs. W and asked her about getting in and then started the conversation about his cholesterol. This is the part where I get a little hurt (just my feelings - no bodily harm was done!).

Her text to me read:
We have to get rid of or really limit the enriched white flour foods and the sugary stuff.  We need more whole wheat and fresh fruits and veggies.  Do a wheat cereal for breakfast instead of pancakes and waffles.  Limit the eggs to 1 or 2 per week because of the yolk.

Now remember we are texting - it's like email - you can't ever really tell the tone of of a text or an email.

I texted back:
Ugh! He's 2 not 82!! He does eat fruits and veggies! I just bought some oatmeal - wish me luck! When I make pancakes they are oatmeal base.  Is yogurt ok?  He eats it a lot.

She responded:
I know he is 2 but no 2 year old needs to be eating that stuff everyday.  It needs to be on a special occasion.  It's not just a special diet just for him.  It's for every kid.  Past the age of 2 everyone should be on fat free dairy products.  Yogurt is great! We just want it to be light most of the time to limit the cholesterol and fat.

Ok - so the waterworks started there.  I love Mrs. W but this totally hurt my feelings and made me feel like the worst mom ever!!  I know that if we could have gone in to discuss the situation it would be different but with the insurance issues right now it is just not an option.  So, I cried.  Called a fried - cried.  Talked to Jim  cried.  Ok - I got a little mad too!!  But then really started thinking about this situation.  We don't eat poorly.  Nate doesn't eat anything (in my opinion) that would cause this --- could it be the diabetes?  Something else?

For the record - Mrs. W has been known to read my blog so I want her to know that I still love her very much but I did get my feelings hurt although I know it was not intentional on her part.  

Here is an average day at the Houston House:
(most meals are for all 5 but sometimes Nate does get something a little different - not because of D but because he's 2)

Breakfast - Leggo Nutri Grain Waffle, Small dab of whipped cream instead of syrup and low-fat yogurt and sometimes 1/2 of a scrambled egg (why 1/2 --- because I eat the other 1/2 with a piece of toast). Up until about 2-months ago he ate the single grain baby oatmeal everyday for breakfast mixed with low-fat yogurt and either a piece of whole grain toast or a waffle. Today - I tried regular oatmeal which he refused so I made the baby cereal with yogurt and he ate it.  No waffle. No egg. 
With the whole grain waffle, 1/2 an egg and low fat yogurt we were getting little to no breakfast spike.  Hello - - - we have been trying to conquer that spike for months! Today he spiked to 390 - WTF?!?!?!

Lunch - 1/2 of a peanut butter and jelly sandwich (Natural peanut butter and reduced sugar jelly on whole grain white - he won't eat wheat!!!) with either goldfish (the crackers not the ones that swim in a bowl) or wheat thins with a few slices of cheese and some grapes or banana.  Sometimes a yogurt here too.  He's obsessed with Yo-Yo!

Dinner - obviously varies a lot around here depending on if Jim is home or not but here are some examples.  Grilled chicken with veggies, the kids always want fresh fruit - - grapes, apples or bananas and a starch.  I'm not going to lie - Nate loves mac n' cheese but we don't eat it often --- hello crazy bg!!  We eat fast food usually once a week -- mostly chick-fil-a but the occasional Happy Meal gets thrown in the mix too.

Snacks - crackers, goldfish, grapes, yogurt, cheese, smoothies, apples and YES, sometimes cookies, Scooby snacks (graham crackers) and peanut butter.

We love 'Noodle Soup' which is pure home grown and home canned tomato juice with a little salt, pepper, butter and shell pasta. We love pasta period! - - - here we go again with the Italian background again - Nate LOVES him some spaghetti and meatballs!! 

I just don't think he eats enough of any one  thing to make his cholesterol so HIGH! What do I know?  I am having the girls tested this week to see if it is all 3 kids or just Nate.  At my last check-up my cholesterol was normal.  Jim doesn't 'do' doctors so I have no idea what his cholesterol looks like and I don't know his family history.  Note to self - look into Jim's family history a little more!!

So there it is - - -
What are you thoughts.  If you feel like being critical --- please do it nicely --- I'm a mother on the edge!  

Ok - so I just banged out this post at record speed because I've got to go overhaul my pantry.  While you are not judging my child's lab results - please do not judge any grammar, punctuation or spelling either.  Thank you!


Alicia Popple said...

I agree - He is 2! I think the diet sounds balanced, my question is this.. when buying "snack" foods are you buying organic and limiting the amount of foods that have ingredients which are not natural (ie refined sugars, white bleached flour, MSG, etc etc). Big tip...few ingredients generally is better.
For his Cholesterol to be high is unusual given his age but could be genetic I would wait to compare him to the girls. I assume they have eaten the same way as him?? If I were in your shoes I would be frustrated too, feeding little ones can be difficult especially if they have any health issue as Nate! Good luck and keep us posted.. you are doing a wonderful job MOM!!!!

Meri said...

First, I want to punch someone for raising the "high" flag for that A1C. I know it is compared to "normal" peeps...but that alone hurts my feelings! That A1C is freaking AWESOME!! Second, you are doing a wonderful job. I am sure that those results are from heredity...and I'm not just sayin that because I love you.

I get hurt all the time from people that I'm sure don't mean to hurt me. As wonderful as they are, they just don't know that we put 100% into keeping our babies healthy and safe and ALIVE, and the resulting toll that 100% takes on our family. We do our best...must we be pelted for not keeping our children on a perfect organic/whole grain/vegan/diet? We make a conscious effort to make our meals as healthy and balanced as we can. When someone says, "you are not doing enough," it is hurtful because we spend 90% of our day focused souly on our childrens' health.

So I understand why your feelings were hurt, because I know the blood, sweat and tears it took to get that "flag" A1C of 7.3!

Cdejulius said...

Laura, my cholesterol is and has always been a little high . . generally in the 240 range since I was in my 20's when I was a lot lighter and its the same since I am not so light! My doctors have never treated it and are not concerned so maybe it does run in the family. I sent your post to aunt Sharon to get her take on it. That darned elephant in the room crops up yet once again! Don't be too hard on yourself . . .I think you do a good job managing his diabetes . . .What was his cholesterol number at his last exam . . .could it be a fluke this time if it was in the normal range last time? Will be interesting to see what the girls numbers are. I suspect as children, we all had high numbers if it were based on what we ate . . .we had lots of eggs, meat, bacon, breads . . .things that were affordable and tasted good. . .we were from good earthy farm people . . .just my opinion but it kind of goes with the territory of being a kid too. . . Of course I never had a reason to have bloodwork done on you but believe me you ate like a normal kid and now have normal numbers . . . you could have been almost 400 and who would have known . . .My advice which you didn't ask for is to do the best you can and try not to stress . . .Let's 1) See what the girls numbers are and 2) Check the last tests and 3) see what the next tests say . . .Do the best you can!!! love, Mom

Joanne said...

Awwww Laura, I want to give you a hug right now! I know you do a wonderful job and I've seen what you guys eat for meals... no different than what any other family eats.

Elise is getting her blood work-up for her next appointment tomorrow. Now I'm nervous about what will appear in the results.

Sarah said...

There is some new research showing that those numbers don't mean a DAMN thing...my mother was but on medication for her cholesterol, but just recently her doc performed a new test that actually checks to see if there is any plaque build up. This came back in the low-normal range, so she was taken off her meds for that and is feeling much better. So, for her due to heredity she will have high cholesterol and despite running half marathons and meds it won't change it, however her blood flow is fine so she's fine. I can find out what this test is...but what I am saying is that those labs only show one small picture.
Pat yourself on the back
You and your children have a great diet.

Unknown said...

The Cholesterol gets bumped up with a higher than normal A1C. His A1C btw is PHENOMENAL for his age (I would not even dare try to improved on that). Your diet sounds similar to ours... don't beat yourself up and FTLOG don't kill yourself over-hauling the pantry.

Joe just had his labs today. I am hoping they are good to go.

connie said...

I think you are doing a great job! His diet sounds healthy and balanced and I think his AIC is AMAZING!!!

Both of my girls get their blood work done on a regular basis, although their cholesterol numbers have all been good, their endo had made a comment to me that often she sees little ones with high cholesterol due to eating a lot of "free snacks"...things like, beef jerky, sandwich/deli meats, cheese and other snacks that can raise cholesterol.

A tip that I learned is when getting blood work done, avoid high fat foods that can spike your cholesterol for at least a few days before your test. Sometimes the food we eat a few days before testing can influence the results...at least that's what I've heard.

Like Sarah said...those labs only show one small picture.

I'm so sorry your feelings were hurt, this is not an easy job but we are all doing the best that we can...and in my opinion you are doing a fabulous job!


Cindy said...

Laura, those labs look just fine to me, for Nate's age and size! Seriously, his cholesterol may be a bit high and it may be something to worry about when he gets older, but right now, he's still a growing boy and limiting his food intake is just not a great idea when he's still so little! Cholesterol, in my opinion, is not something to worry about with a 2-year-old! It's not like he's heading towards having a heart attack in the next couple of years. And based on what you've typed out, it sounds like he has a very well-balanced, healthy diet!

Big hugs! You're doing an awesome job and he's a happy little boy! That's what really matters!

Lora said...

OH PooooooH!!! Your diet makes ours look like a unhealthy mess!! I wouldn't worry all that much. Your an awesome mom. Besides, its hard... Justin WILL NOT eat "brown bread" either.

alix said...

Laura, I am sending you a big hug right now....
Nate is doing great and you are doing a fabulous job!

Don't overwhelm yourself, if you see any tweaking you need to do, do it slowly :) All is well my friend!

Rachael said...

I realize he's only 2, but come on! My doctor says you sometimes run higher on cholesterol, when you have a good A1c, and his is wonderful. You should be proud of yourself! Hugs to you for being an awesome mom!

Renata said...

Uhm, if your diet is poor...we eat like CRAP then. I am all for doing your best, but I also know there is reality. We eat quite a bit of pasta too and whole wheat. And my kids eat fruits and veges like there is nothing else on the planet. However, reality does fit in and there is sweats and sometimes (OMG) fats. You have a healthy balance and I agree with everyone else. If the results come back really bad over and over again and you can't link it to anything BUT the diet, then you can freak out. But you are doing a wonderful job. A wonderful job.

You are NOT the worst mom ever!!! You're doing a great job. Don't doubt yourself. And, as Reyna said, don't overhaul your pantry.

And do NOT worry about your grammar, punctuation or spelling either!!!

Anonymous said...

This is my 3rd attempt to post... all these may show up at once... anyway... you are doing a great job... when you're "in the weeds" it's easy to feel like they're over your head sometimes and hard to keep perspective... just breathe... slow deep inhale, slow, slow exhale... and breathe again... and again... you're doing a great job!! I'll email you privately.

One more time... you're doing a great job...

Aunt Sharon

Anonymous said...

Wow Mrs. Houston! NOW THAT'S A POST! That's what I'm talkin' about on my post. I have like 10 questions right off the bat on this deal!? The whole cholesterol thing I ain't buyin' either. IF there is an issue then it must be explained by non-traditional factors. (Google Reyna's suggestion)Do know that my Endo and about 10 books I've read say that you want to be very careful with the lower A1C on kids...I don't like the higher numbers, but I've seen Ellie go from over 300 to 100 in 45 minutes before...change those numbers a little and things can get real bad real fast. That is what my Endo keeps reminding me of, kids systems are unpredictable and that is an important fact. I still would love to get Ellie to a target of 140 based on my own observations...but I haven't the nerve to challenge our skills that much yet. AND my husband swears by the whole what you eat before the test can have a huge impact on the results. By the way Ellie eats exactly 5 different things at this point in her life...annoying yes, sometimes they eat what they eat and since we are all here on this earth still, it's probably ok to just eat what works! God knows I only ate about 3 things for a long time when I was a kid (none green and leafy!) I'm still breathing!

Anonymous said...

All I can say is congrats on doing a fantastic job taking care of Nate. That's all I can say. You are doing a great job and that A1C is freakin' AMAZING!

Repeat after me: We can't control everything! Your family's diet is not out of whack, and you don't have to make any major changes. Just keep nudging in the direction of whole, unrefined foods a little at a time. Check out "Healthy Life" bread; 100% whole grain, no HFCS, only 25 g carb for 2 slices, and as soft as white bread. Kroger brand pasta is 100% whole wheat and the kids like it. Also, check into adding more Omega's to his diet. Shoot me a note if you'd like to see our naturopath's recommendations for T-Bear... You're doing fine, and don't take it personally :) Mo

Penny said...

Hey Laura - you are a great mom who is feeding their kid good stuff. Take their recommendations with a grain of salt and just move with it. His A1C is fabulous and I am sending you a giant pat on the back all the way from PA.

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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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