Hi again everyone!
I finally have my daughters T1 antibody results and I was hoping someone might be able to help me interpret them or know where I can find some reference charts/stats to compare?I'm hoping to find out how her + results range(high/low/moderate,etc)and also disease risk percentages(and or)approximate time frame till disease onset.Is there a test that can determine the rate of destruction to beta-cell function(fast/slow,etc)?I know stats will be hypothetical but hypothetical is better then nothing!
Follow up appt is 7/10 when I will be able to speak to her endo at length,but I'd like to gain some info on her results ahead of time so that I am able to choose my questions appropriately and speak to him with some sort of sense.
Recap> She does not(yet)have T1 but has shown some wacky unpredictable blood sugars both high & low.Antibody tests were run while she was admitted for studies to rule out rare metabolic diseases.I was not aware they ran these till recently.
An excerpt from endos dictation:
"Hypoglycemia,possibly due to very early type 1 diabetes presenting in an atypical fashion."
He also quotes:
"Potentially,her beta cells are erratic causing her to have unpredictable hypoglycemia before she eventually becomes hyperglycemic.However,this is completely uncertain."
Hi Mom of 4! I am happy for you that you received these results. It's a great starting point to understanding what is happening with your daughter. I am not a medical professional, just a mom of an 18 year old who was diagnosed at the age of 21 months, and unfortunately I do not have any background knowledge regarding antibodies. However, I would like to steer you to The Joslin Diabetes webpage. You can find them at www.joslin.harvard.edu. There are sections that you can request information and also there's a tremendous amount of information if you do a search for insulin antibodies. I think you'll find what you're looking for. I also would like to encourage you to check the Juvenile Diabetes Research Foundation website at www.jdrf.org. There is a section that discusses clinical trials that deal with attempting to avoid the destruction of beta cells that you may be interested in.
Are you taking her to a different endocrinologist than you've been seeing? Do you have a large medical facility with a reputable endocrinology department near you? Joslin has an amazing reputation. You may want to consider a summer trip to Boston!
I read your previous posts and can just imagine the frustration that you are going through right now. All you can do is take it day by day and keep asking questions!! The more knowledge you acquire, the more in control of the situation you will feel. It is a very humbling thing, depending on others for the well-being of your own child, but that's what we're here for, to help you get through this and help you to realize that you can.
Good luck with your daughter and please keep us up to date on how she's doing.
Thank you so much, GG for taking the time to respond to me!
Yes, our daughter is still under the care of the same endo she saw initially. The doctors that orchastrated her studies in May to rule out the rare diseases like hyperinsulinism, who also discovered these antibody results in the process, are all affiliated here... http://www.chop.edu/consumer/jsp/division/service.jsp?id=26671
Given the reputation, you might understand why I am torn over whether a second opinion would do any good. I'm sure its natural for *any* parent to feel like they need a second opinion when it comes to their kids and I admit, a big part of me wants to get a second opinion to compare goals/treatments/opinions etc. But I'm not sure I'll find anything better or different then what we have now? I'm very torn.
I never imagined being in a scenario like this(who ever does), finding out that our childs life could possibly change as we know it. You are very right... its a completely different chapter emotionally as a parent, realizing that your childs future and well being could one day be left in the hands of ever changing medical science. I dont feel as safe when I'm riding in the passenger seat of my own vehicle, I prefer driving because that is where my comfort zone is, metaphorically speaking.
It helps lessen the shock when I am able to find answers to some of the nagging questions that run through my mind! Even if the answers are not exactly 100% scientifically accurate as of this day in age, the studies and theories can provide me with some sort of generalized picture to build from though. The picture isnt perfect, might never be... until the day finally arrives when the unknowns become known. I hold faith that day will come! No matter how hypothetical or uncertain medical answers might be at this stage of the game, I think all answers somehow stem from tidbits of research or years of experience and that alone must account for something at the very least.
This might sound a bit awkward but I explained to my husband the other day that I actually feel like I am doing something productive by investigating every piece of information at every angle I can possibly find, relating to our daughter. I want to understand all this with as much accuracy as possible, even if accuracy isnt as obtainable as we might like it to be. The bits that I pick up along the way get me through these days of *waiting and wondering*. Especially knowing, that if I hit a road block or feel overwhelmed... there are generous and experienced people like all of you here, who take time out of their own personal lives so that people like me can rest easier oe even sleep better at night!
The world appears an unpleasant place at times but it will never completely fall apart because people like yourself bind the loose ends for all of us!!
Well, Mom of 4...people like you are why we're here! Thank you! I can totally understand everything that you are feeling right now and you are very fortunate to be near such a large city and utilize their medical facilities. Would you be interested in having someone from your local JDRF chapter get in touch with you so that you can network with some local people? If you do, just visit their web page at www. jdrf.org and click on the Online Diabetes Support Team link - it's on the left side of their home page. You can explain that you began here at Medhelp and are looking for someone from the local chapter to contact you. Just a thought...
Please keep us posted!
Thank you so much gg! Yes, I'd love to be linked with local people! I will definitely look into that!
I was wondering, we had another abnormal routine with our daughter late last night (shes been fine today) but I'm not sure if I am looking too far into this. Would I be a pain if I ask for your opinion on this situation? I think I might need to begin a blog so I dont keep pestering you guys. :-/
We had dinner right about 7pm last night (normally we eat around 6pm). My daughter ate as usual.
HOWEVER, shortly before they went to bed (I am guessing it was about 8:30ish), 6 yr old son has a meltdown! "SHE" had eaten "HIS FAVORITE" last candy! A small, car shaped, candy sweet tart. Dont have package info anymore but they are roughly half the size of a toy micro-mini matchbox car. Teacher gave son a small pack of them on his last day of school. I thought he ate them all, apparently he saved one in his backpack, daughter found it and ate it last night! Never a dull moment! :-P
Kids went to bed at 9:00pm (normally 8:30pm).
At 9:20ish, daughter cries out in tears (kind of frantically) for daddy. Night terrors or crying spells arent abnormal for her but we have never seen BG's in succession. (didnt realize it might be important to monitor that). Husband goes to calm her. She tells him "I need you to check my blood numbers to see if they are high". **She hasnt ever specifically suggested her numbers might be high** Husband gets monitor, she asked for a drink (he gave her water) and checked her. She was 237mg/dl, husband brought her downstairs to me.
My heart sunk at the reading. She was sort of dazed, like something startled her from her sleep but she couldnt tell me what it was. Normally she will tell me she had a bad dream or just didnt want to go to bed, etc. I asked her if something was wrong and if she was feeling something, she said things like "I dont know. My heart was beeping. I dont feel good". I checked her urine, sugar was negative and ketones were barely between negative and trace. (She also peed twice in less than 30 minutes). I kept her with us so I could keep my eye on her and monitor her sugar, she had me pretty nervous at first. Here are all her readings for all of yesterday..
I'm not sure what to make of this. We have been using a glucometer for months now and we are diligent about cleaning her hands and using the control solution with each test strip cartridge. The monitor we have now (Accu-Chek Compact) was given to us by her endo in April and we were taught how to correctly use it. I feel certain that no contaminants were on her hands but how do you explain this? I almost *want* to blame it on contaminants just to have a reason for it! Is it possible that piece of candy she ate made her soar that high and when her pancreas finally kicked into gear, it brought her down like that and I just happened to catch it happening? Taking her daytime readings into consideration, I'm not so sure I should dismiss her night time readings as a mistake of some kind... what do you think? She did not have anything else to eat or drink, besides that glass of water my husband gave her and one that I gave her before I put her back to bed around 11pm.
Also, in my other thread, her 5 hour OGTT showed a similar pattern I think... sugar peaked 190 at 30 minutes then dipping to 66 at hour 4. I never saw a crash last night though. I wish there could be some kind of rhythm to her days. For the most part she seems ok but a scary reality sets in when these odd occurrences happen to her so unpredictable like. Do things like this happen to people that are actually diagnosed with T1?
I'm so sorry this is long (again)... I am curious to know what this might look like from other peoples viewpoints? Am I being absurd or overprotective?
Hi again Mom! Have you checked into Continuous Blood Glucose Monitors? You may want to mention this to her endo and see what they say. I have to agree with the previous post about over-testing. You don't want to create fear in your daughter, especially since she wasn't low. The only time that re-checking in 30 minutes is necessary is when they're low and you have treated with 15gm of carbohydrates. I think it's a terrific idea for you to get lined up with a dietician/nutritionalist. It will really help you make sense of the whole carb thing. Best of luck & keep us posted!
Nightmares and high (or low) blood sugars are not uncommon at all. Our bodies are under stress and the physical response to that type of stress is not all that different from the physical response to fear or danger. My non-medical interpretation is that we "visualize" our physical experience during sleep ...
I'll snoop around a bit more on the antibody tests. Probably you know this, but labs often put our measured result first, followed by the lab's normal range for that measurement. When numbers are outside the "lab normal," docs look for an explanation or diagnosis. Patterns will be important to track, I'm sure.
Do you test this often, every day? I know this problem is concerning and frustrating for you, and you want to have all the info available to you that is possible. But it seems as though testing that often is unecessary at best, and psychologically harmful at worst.
Remember that she has NOT been diagnosed as diabetic yet, even though her lab results may lean that way in the future. If you test as often as 5-30 minute intervals in ANY normoglycemic person, you may see some swings you would be surprised about.
As a mom, and a nurse, I would endorse your getting info on a healthy diabetic diet (good for virtually anyone, anyway), concentrate on helping your daughter learn about the best ways to develop healthy eating habits, and relax a bit on the testing. Remember, she IS NOT DIABETIC. It would seem logical that focusing so much time and energy into frequent finger pokes would run a risk of making her feel very different, and even resentful and angry at some point in the future. She may also be somewhat frightened by all the poking and the implication of disease, though she may not verbalize it.
If she does become diabetic in the future, there will be time enough for learning to check her blood sugar. Even then, it likely won't be necessary to check as much as you are checking now. You may be inadvertantly encouraging an unhealthy fear and fixation on "feeling bad" in her young life.
As a mom, I completely understand it, though. You want info. Sometimes you just have to wait and see how the universe pans it all out in the long run, while encouraging healthy eating now. Good luck!
Thank you both for your responses! You are both correct in saying that we are worried and skeptical that our little girl may one day get the "diagnosis". For right now, we are trying to learn everything possible... it seems the right thing to do because it appears its the *only* thing we can do. As much as I try to keep a positive outlook, shes my baby and I dont want my baby to be in this position. :-(
I am so sorry that you both got the wrong impression about how often she is tested. I need you both to understand that we do not test our daughter that often normally, not at all! That evening was an exception due to the 200+ reading that we saw. I want to reassure you that our daughter is not tested everyday... At most, we will test her on a schedule 6X a day (as instructed) but only 2-3 days a week, this keeps us on top of any changes and lets us communicate how she is doing with her doctors. Other then that, she is tested only when symptomatic or if she tells us she isnt feeling well and asks to be tested. I will always retest immediately if I see an abnormal high (over 200) or a low, just to be sure it was not an error. I always test her after shes treated for a low to be sure she returns to normal.
The high reading that night struck fear in both myself and my husband as highs of that magnitude are not a frequent occurrence (thank God)... we know its out of our hands if she develops diabetes and high readings are the landmark signals. To be honest, that evening was a real eye opener as it was completely unexpected. We were very afraid to let her go back to bed that night because she is prone to lows after a high. The only aspect we have any control over is learning about foods and how they affect her and doing everything in our power to prevent her from suffering diabetic ketoacidosis upon diagnosis. In a very large way, we are fortunate (and very grateful) that our daughter may never have to be diagnosed under such a dangerous circumstance.
To touch upon the psychological aspects, I know all these changes could very well leave their mark on my baby... I do not want to cause undue stress on her and will do everything in my power to prevent that, please know that! This may not be a fix all, but we are fortunate in the fact that she has an extremely close relationship with her pop-pop... who is a licensed psychologist.
I have recently become aware of the continuous monitors (I think these are a wonderful idea, especially for young children) and if her doctors feel she would benefit from one, I will order one (no matter the cost) in a heartbeat.
It is very difficult to talk about these things in an online setting because often times it is nearly impossible to portray the full picture. Despite that though, I have gotten some very helpful information/feedback. I hope I was able to ease any concerns!
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