Hello Mom of 4,
First of all, I'd like to say you're doing the right thing by being concerned and getting your daughter to the doctor.
I'm not a medical professional, just a parent of a child with type 1. I have to apologize, the archive search isn't working, so I can't look up your post history, but I think I can figure out what it was about. To make sure I understand, here's what I see from your descriptions as your daughter's symptoms: she is a pre-diabetic with islet cell antibodies in her system. She's having abnormal high scores, but nothing too high. She's having lows, and that's where your concern is based.
From that summary, as a non-medical professional, I'd have to say that your daughter is likely to be developing type 1. Ketones, moderate highs, and severe lows are the symptoms on which I'd base that. That being said, she may never actually develop diabetes. She may remain borderline for the rest of her life. Just because a person has the islet antibodies doesn't mean they will develop type 1. I can't find any studies which describe that, but that was the information given to me when I participated in the TrialNet study. Not having a history of type 1 doesn't really mean anything, type 1 is being diagnosed more and more often in children that have no history in their families. It's unfortunate, but true.
My suggestion would be to continue to keep in contact with your endo and family doctor, followups will be necessary to verify glucose scores and the status of the pre-diabetes. I would also suggest, if you have not already done so, to adopt a carb-healthy diet. Know the carbs in the servings of food that you are serving, try to keep them consistent (meaning don't have a 20 gram breakfast one day and a 150 gram breakfast the next). Your endo should have a diabetic educator or dietician available to help you create and maintain that diet.
Does that help?
Sorry for the bumpy post,I fit all I could into 1600 spaces.Hypo began about 1yr ago,out of the blue.Unexplained,random,aprox 0-2 per month.Borrowed neighbors meter one day during a spell,realized her low and here we are now.
Endo has not yet tagged her "pre-diabetic" but made specific mention to T1 due to antibody predisposition.Given he wants follow up every 2 mos he seems cautious,leaving me anxious/afraid and full of questions.I found a TrialNet study (Natural History) researching these antibodies in pre T1 onset.Since daughter is antibody +,I tried to volunteer her but with no family history, they turned her down. :-(
I wish I knew more about these antibodies and her risk.My desire/need to learn about these antibodies is comparable to that of a scientist I think.I feel afraid which makes me feel hopeless yet obsessed at the same time.I crave the knowledge,the whys,hows,whens,what ifs.Her subtle body hints are there,I see them,have for a long time.As time goes on,things seem more pronounced and at times,worse.Gut tells me something is not right.
Endo does not wish to relate her hypo to her antibody presence at this time.Tho in my mind,as her mother/knowing my child,all these things run together and suggest common ground.
Normally very bright,happy,girly,sweet etc.She becomes irate at times, angry,combative,whiney,aggressive,downright mean,cant verbalize how she feels etc.Example~She will impulsively kick 2yr old sibling in head as if her brain was nonexistent.Exactly resembles an adult when they accidentally put milk away in towel closet, realize what they have done and feel embarrassed/stupid/ashamed etc.I have 3 other children and have never felt an urgency such as this inside myself.
I see correlations between her behavior vs BG's.This AM she had cereal.Started bouncing off walls,I could not settle her.She got irate,mean,combative,demanding to eat!This was 1hr after cereal.I test her, BG was 210.She also had trace/small urine ketones.During lows,she is opposite,as if her batteries died.It seems rare anymore that she is the happy,determined,sweet,outgoing little child I know she is.Why does she need to live like this?I want my child back but without a real diagnosis,how do I help her?If T1 really is in her future and all these issues are somehow related to that,I wish it would stop tormenting her like this and show its ugly face already... so that we can fix my child! :-( I'm Frustrated!
I apologize if I come across harsh or angry. I do not mean to,not at all. Its just that I ache for more specific answers... to have some kind of reality as to where my daughter will be in another year or 5, or what this all means,...ANY kind of reality is better then the void I feel right now.
I seem to be having a hard time keeping her sugar out of the hypo range today for some reason... :-( She had a few readings today that bother me... any opinions?
* 8:30am (fasting) she was 69. No ketones.
* 9:00am ate breakfast.
* 10:00am (bouncing behaviors) tested 210. Also had + small ketones.
* 11:30am (symptomatic before lunch) tested 60.
* 11:40am ate lunch.
* 12:15pm no ketones.
* 12:30pm tested 173.
* 2:30pm she came to me saying her tummy hurt and that she has a "hedick" (headache) and needed me to test her (she is rarely wrong). I tested her and she was 57. Gave her a small snack and a little OJ.
* Its now about 30 mins later and she is testing 154.
Do you know how about many grams of carbs she had and when since last night?
No problem about the bumpy post, I just wanted to make sure I understood your situation. I fully understand how you feel. It's frustrating because there is so much you don't know, it makes you angry that nature is making your child deal with these things, and you're overwhelmed by the situation that you're dealing with. Very understandable, and I've been right there with you. But keep up the research, keep asking questions, you're doing the right thing.
Calling her "pre-diabetic" was probably not the best term on my part. What I meant to convey was that she has all the symptoms of a person who may develop diabetes, but that development may never occur. When it comes to your children, being cautious is best, and a parent's gut feelings can identify problems that a doctor doesn't see. You're right in being concerned, and you are doing the right thing by having her checked out. The hypoglycemia you see may be a sign of her pancreas starting to stall and having issues, and then when it comes back online so does she. That's another sign that diabetes is possible, in my opinion. The problem is that, since your daughter's pancreas still seems to be mostly working, and it may continue to mostly work, it's nearly impossible to predict what will happen in 1 year or 5 years. But keeping close tabs on her glucose will help you down the right path.
My 8 year old diabetic displays some of the same emotions as your daughter. She is also bright, happy, girly, and sweet, but just this morning she had a high and was very irritable and just smacked her brother in the back of the head. 99.9% of the time when she's agressive, mean, and irritable like that, she'll either be high or low. Keeping her glucose under control keeps her as the happy child that we want to have. It's just not fair that a child has to deal with highs and lows, but if we can identify them we can keep their frequency to a minimum. Keeping her diet regulated should help. There are certain cereals, for example, that we simply don't buy anymore because their total carb content per serving is just too high. There's another brand that makes her go low every time she eats it. Food does funny things sometimes.
I did some searching on islet antibodies and found <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16211374" target=_blank>this link at the NIH</a>, as well as <a href="http://www.childrenwithdiabetes.com/dteam/2003-01/d_0d_a18.htm" target=_blank>this post</a> at ChildrenWithDiabetes.com. ChildrenWithDiabetes has a pretty good search tool which can locate a bunch of research on islet cell antibodies. <a href="http://diabetes.about.com/b/a/214352.htm" target=_blank>Here</a> is another article about research that can predict type 1 with abuot 80% accuracy. That might be something that you talk to your endo about.
I have been reading this conversation with real empathy. I hope to encourage both of you wonderful moms by saying that I have had type 1 diabetes for 36 years and my life is fully normal except that I have to take insulin shots and count my carbs. A good life is fully possible with diabetes, so hang in there.
Now, for the hypoglycemia, let me agree with the suggestion to ask to be referred to a dietician. I have people with reactive hypoglycemia in my family and there definitely are dietary changes that can be made to help minimize the hypo spells. Counting the carbs is a great suggestion so that the body has always the same number of carbs being eaten and it gets no shocks with high-carb meals. And adding proteins is often suggested to help with hypoglycemia, for it does ease the stress on the pancreas, which is over-producing insulin when stimulated by straight carbs. Some hypoglycemic people find that lowering the number of carbs that they eat seems to help, for the pancreas then gets a break and starts to ease off on its overproduction of insulin once the person adjusts to the low carb diet. But others find that this just makes them more hypoglycemic. So it will be trial and error until you find what works the best for your daughter.
I have heard some doctors suggest that you drink a half a cup of milk instead of orange juice to raise a low glucose reading, for this does not dump into the system quite as quickly as juice does and is not as likely to cause a high reading later. I personally like to add some Sugar-Free Nestle Quik to a small cup of milk to counter-act a low. It works well and is healthy. In your daughter's case, it might help keep her from spiking high afterwards.
Others have told my hypoglycemic sister-in-law to eat nuts and cheese for snacks instead of snacks with carbohydrates. This would help IF your daughter's hypo spells are due to an over-reaction to carbohydrates. If you try this, though, you might want to watch her carefully for a few days to see if the absence of the carbs in snacks makes her hypo spells better or worse. It may not be the solution at all, depending on how her pancreas then reacts.
I am a mother, too, and I fully understand and sympathize with the fear you are feeling. It will get better as you learn more about carbohydrates and how they work with your daughter. Even if she develops diabetes, her health will be better because you are being such a responsible mom and getting her tested often so it gets caught early, before damage can be done to her body. You are absolutely correct about moods and glucose levels, so do check her when her mood seems "off". We do tend to feel irritable or depressed when glucose levels are high or low. And it appears that your daughter already can recognize when she is "off", and this is good. We do wish you the very best.