Type 1 or Hypoglycemia???

[DiamondJules]

Hello!, I have an 8 yr old daughter. She had a GGT last November.  The 1hr result was 198 with sugar in her urine (the value was 100 but I dont' know what that means) 2nd hour was 199 with sugar in her urine, 3rd hour was 196 with sugar in her urine; on the 4th hour her blood sugar dropped to 40 and no sugar in the urine.  Her fasting plasma glucose was 138 and the A1C was in between 4.5-5.5.  She eats CONSTANTLY (hungry every hour--literally), drinks constantly, goes to the bathroom often, she is 62lbs (dropped from 70lbs this month) and about 4'10' (yes that's tall!) Recently she has had a problem with incontinence and says her vision sometimes looks like it's foggy (this is rare). She is really hard to wake in the mornings. We home school and I have noticed learning problems. I am wondering if this is true hypoglycemia or if there is some element of diabetes going on here.  She was in Children's hospital as an infant and had a really heavy fluid load (going from 9lbs to 14lbs over night) due to a heart problem which is now alright. I'm wondering if there was some possible damage to her pancreas as a baby that we are just now seeing the result of and should I be worrying about these numbers.  She has had a random blood sugar of 245 after drinking just regular lemonade but this was once and has not been any higher than 205 since then or that I have actually caught on a meter.  We feed her as if she is hypoglycemic. I bought some Ketostix and Diastix and she regularly shows light ketones in her urine and sometimes sugar. Any suggestions would be greatly appreciated.  Jule

[JDRF-Team-LRS]

Given your situation, I would suggest doing "what it takes" to get a second opinion.  If your child were doing better by following the current doc's info, I might think otherwise, but you who see your child every day realize she is *not* doing better.  You seem to have a good knowledge base and you seem to have good data to share with that second doctor.  Perhaps thru your local JDRF, you can be in touch with other parents locally who are pleased with their child's care.  

If you visit the JDRF website (www.jdrf.org) and look for the Online Diabetes Support Team, they will first "match" you with someone in a similar situation and they will also help you reach a nearby JDRF chapter or branch.

Good luck.  Your child does need you to keep looking for/ fighting for good care for these symptoms.  Diabetes can be treated successfully.

[JDRF Team SGG]

I am a type 1 diabetic who has had my share of struggles with hypoglycemia in the past. Your questions about why your daughter is not on insulin for the high readings now is a good one. If her pancreas is over-reacting to sugars and she is hypoglycemic enough for a reading of 40 every now and then, it would make sense for the doctor to be very reluctant to put her on insulin. Because her pancreas seems to be sputtering, it would be too dangerous to add extra insulin not knowing when she might become hypoglycemic, for it would make those hypoglycemic episodes life-threatening to add injected insulin to what her body is already producting. So all the endocrinologist can do is to wait and let the pancreas either wear itself out or settle down. I would highly recommend going very light on carbohydrates in her diet unless a hypoglycemic episode requires the carbs. Reactive hypoglycemia is made worse by the fast carbs that are craved when the sugars are low. Proteins and a very limited amount of a fast carb such as juice are the key to recovery when her sugar is low. But don't overdose her on sugar, but give small amounts of juice, such as a mere half cup with some protein such as cheese of nuts to help give her staying power when she is low, and then wait for about a half hour before you give more carbs even if she still feels bad. The trick is to stop the snowball effect, and this may take a long-term diet change. It sounds as if you probably already know about the carbs and protein mix. Her nightmares are probably low blood sugars in her sleep. I did this when having reactions in my sleep when overdosed on insulin during a pregnancy. The fatigue is probably from both the lows and the highs, for both are draining. It does sound as if she needs to be followed very closely, and insulin will be the answer once the lows are under control so they don't happen unexpectedly. It would be good if you do fairly frequent finger pricks to check her sugar levels. As for thirst, when blood sugar levels are either high OR low, thirst is common. It is a different sensation in each case, but the mouth and the eyes are both dry when blood sugars are low, while more of a parched thirst is the case when sugar is high.

[jdrf team dm]

Diamond,
My son was diagnosed at eight with type one and had the same symptoms.  He was drinking constantly and had weight loss.  As far as how much drinking is too much, that varies. While I'm not a Dr., it sounds like the blood sugars are running high.  I'm sorry you only have one clinic for access. If you can find a local chapter of JDRF in your area, they may be able to give you more information. I'm sure your physican is well qualified, but a second opinion never hurts. I would recommend to keep trying to get a definitive answer. I know how frightening not knowing what is wrong with a child when you feel you can't get an answer.
Your not alone, please let us know if we can help in any way.
Take care,
dm

[DiamondJules]

We have seen a Ped. Endo but he says it's Reactive Hypoglycemia and that a blood sugar of 198 or 245 is not high enough to be diabetes. Isn't the ADA guideline 126 and above for Fasting Plasma Glucose?? Her's was 138 a year ago. Which needs to be retested. If true hypoglycemia is rare, then when do they decide that this is not reactive hypoglycemia and decide to treat her for diabetes.  I am really worried! This has been going on for a year now and I see symptoms getting worse and worry that I'm not doing enough but when the Ped Endo won't listen, what next??

**Do these numbers of the 145's 198's and 245's indicate a need for insulin?  

**Does her GTT reslut look like a typical or early Type 1 GTT result???

**If the pancreas is sputtering, working then not working and going back to working, which appears to be the case from her eratic symptoms; when does it stop completely and diabetes take over?  

**Would treating with insulin help this sputtering/stopping and starting of her pancreas; and would early treatment help her to not become a severe diabetic??

***What do I look for do distinguish that change? I see symptoms now.
Also, I was interested to know about how much thirst is too much.  I have read and read and all I see is excessive thirst. What is considered normal and what is excessive???  Wanting something every hour, every ten minutes?  Thank you all for reading and answering this worried mom.

[JDRF-Team-LRS]

Jules,
I'm not a physician, but I have been reading lately that there is often a phase of apparent hypoglycemia prior to developing Type 1.  ANd then, there's often a honeymoon phase after initial dx where the pancreas can still squeeze out some insulin in response to glucose -- tho' it may be a delayed response.

I was dx'd as a teen and it's now nearly 35 years later.  I'm healthy other than DM.  In addition to finding an endocrinologist who'll work with you during this time, I'd encourage you to also read at the JDRF web site about DM & teens.

My endo once described the gradual onset of an endocrine disease as characterized by the gland "spurting & sputtering" .. and certainly under stress.  Based on the numbers you've reported and the symptoms you describe, it seems clear to me that your daughter will benefit from medical intervention ... now.

I hope you get all the answers you are seeking, and I can assure you that if she does have diabetes, you'll have plenty of questions and this site is one good resource to get some insight from folks who've lived with this disease, faced lots of challenges, and are willing to share & learn.

Keep us posted, okay?

[DiamondJules]

I also wanted to ask what is considered excessive with the drinking and going to the bathroom symptoms.  I read about this symptom in everything about type 1 but nothing says "how much" would be considered excessive. I wanted to add these things to my last post but the number of characters for the message wouldn't permit. Some other symptoms that my daughter has are dry chapped lips (all the time....we keep chapstick with us at all times), dark circles under her eyes, stomach cramps and nausea. When we go anywhere, we have to race to find bathrooms, how often of this going to the bathroom is excessive. She wakes up in the morning having had very bad night mares and this is a nightly event, so much so that it's caused her to not want to sleep in her room. We have tried feeding her right before bedtime to aleviate this but it doesn't seem to help. She is terribly skinny; slim fit pants are baggy on her.  We have seen a Ped endo but he says her results are consistent with Reactive Hypoglycemia or Impaired GTT. His medical group is the only one in our state so I am really, really at a loss as to where to take her or what to do.  Thanks everyone.........Jules

[JDRF-Team-cd]

Jule, very good question as the symptoms are similar. I would suggest that your daughter see an endocrinologist if she is not already. True hypoglycemia is rare.  This could be a pre diabetes condition, she could be experiencing delayed first phase insulin response and because of all the hypoglycemia, her A1c looks good.  I would definitely suggest seeing a pediatric endocrinologist for the proper diagnosis.  Have a wonderful weekend.