I have taken my son to ICU 7 times this year. I am at my wit's end. Friday one of my friends was visiting when the doctor came in. He said that I was very hostile to them, almost defensive. Maybe I was, but I get so sick of them telling me that if I give Cam his medicine, he would not go DKA. So I wanted to lose my job? So I love lying on that sofa that 1000s of strangers have laid on? So I am fine with the fact that my son will be dead at 30? I told them that we measure everything. Half a cup is measured in a measuring cup. 3 ounces is weighed on a scale. An alarm is set to give his 9pm lantus. The previous visit began like this. 7a.m. 87 blood sugar. 17 grams of cereal, 13 grams of milk, 19 grams of juice, 2 grams of cheese (51 grams). 8 units of humalog (1 per 7 carb ratio). 11a.m. 597 bloodsugar, large ketones. Went to doctor. Doctor sent us to ER. ABG negative, white count 8. 2a.m. throwing up. DKA, Bloodsugar HI. Ketones greater than 80, white count 31. We went back to ER, transferred to Children's Medical center that Saturday. Sunday bloodsugar 346, ketones negative. They discharged him from the PICU. Monday strep (for the 8th time since T&A). Wednesday secondary infection.My child did not get well, and ended up back in the hospital this week. The doctor actually looked me in the face and said there was no way he was getting his insulin or even with being sick he would not get ketones and DKA. They called social services.
Ask what they think a white count going from 7 to 31 will do to a blood sugar. That’s a RAGING infection and the standard dose of lantus would not begin to cover the bodies metabolic need at.that point. Bring up this point!! So sorry this is happening.
That's crazy. You did what you supposed to do-- they are saying you don't give him his insulin?? If he's 87 when he woke up then he's getting insulin. Weren't they giving insulin in the hospital, and he still only went down to 346? Obviously he needed a lot of insulin if sick. And anyone can go into DKA even while taking insulin.
Re strep: my son had strep 5 times last year and we got his tonsils out-- it hasn't come back this year.
I am so sorry, and it is hard to imagine what that feels like in your situation. I have heard that illness could make blood sugars skyrocket. Sounds like there is a lot going on in your son's body, and you could use help, not blaming, to make him safe and healthy.
First of all, just because he has t1d it does not mean he will not live as long as the next kid. He can have a long and very healthy life. He needs to get his blood sugar under control to be healthy in the long term, and I hope you can figure that out with assistance.
Consider doing two things. One is logging every dose- always writing it down or having his caregiver write it down. The doctors need to see this, and it will help you figure it out. If there are ongoing problems and they are worried and calling for social service help, there is a good reason on all sides to always have it written down.
By the way, my best friend in this sucko diabetes thing is our social worker. She is s medical social worker. Oh my gosh, can I just tell you how awesome she has been? She knows how scared I am, she knows how hard it is, and she gives us strategies to cope.
If your friend saw you acting defensive, then you most likely were. That is so natural when we get fed up. It sets up an "us and them" mentality that everyone falls into. Try asking for help. Try showing them you are frustrated by being clear that you have done everything and something is not working, and you need more help. Of course, by being partners with the doctors you get farther.
7 times! Poor mama. You must be at your wits end and so scared. I hope your regular doctor can help you or the nurse you work with. Do they know what's going on? I hope you find a strategy to work with these high blood sugars. I hope you get a good team around you to help you do this. Much love and please hang in there! You are a good mom and your boy is lucky to have you.
Sounds like you are doing everything right but he just needs more insulin for some reason. Of course you are going to sound defensive when you are defending yourself. I hate when people say that as if it's a sign of guilt. I would be, for sure. Do bring up the white blood cell count and explain the resulting blood sugar. I assume you don't have a cgm. Can you make a change to your routine & do a finger stick more often so that you can correct as needed? If you don't have enough strips for this, maybe you can request an increase in your prescribed number. You certainly have evidence to show that more testing is necessary if they argue with you. Can you make an appointment with this endo or diabetes educator for support? I wish I lived close and I'd tell these doctors and social services to help you instead of accusing you of being negligent. They need to work harder to figure out why he is having recurring infections and help resolve that. I'm so sorry and I hope this can get resolved soon, for your sake and your son's safety.
Good point - if they couldn't get him down into normal range in the hospital, how can they try to blame the parent for not getting his BG down? I know that the doctors and social services probably think they are protecting him, but they need to get all the facts along the way.
oh Shant, I feel so bad for you. OMG, I can't understand why the docs aren't helping you and telling you WHAT to do instead they are blameing you. I also wish I lived closer and I would give them a piece of my mind!!! Can you change docs? I would definately if you can. Don't let them bully you. You are the mom and acting for your son and if they don't see that they should be held accountable. Please update us you and your son are in my prayers.
He has had strep 8 times since having his tonsils removed.
We have done a PA. He goes through 200 strips per month. We are going to Atlanta next month.
Hang in there Shant. I hope you get the kind of medical care you need for your son. I am thinking about you. All the best from us up here in Montreal, Quebec.
Have you considered getting him on a continuous glucose monitor such as a Dexcom? Sometimes this can help with spotting patterns of high BG at the very least it could alert you when his BG is rising to much. Hope you figure this out. Bless you.
Shant - I am sorry you are having problems with your son's diabetes. My daughter has had T1D for over a year now and it can be quite a challenge. I will offer a price of advice that has worked very well for me in managing my daughter's BG: ***Not all carbs are the same and the differences are VERY important*** - I do not think they emphasize this enough in diabetes education.
For example, unless your son is low, he should basically never drink juice - juice is rapidly turned into sugar in the bloodstream. It's the reason why a T1D is supposed to drink juice when they're low - it's one of the quickest ways to raise BG. Raising BG very fast is bad unless they're low. Cereal can be good, but often (usually in fact) it's bad. It looks like the breakfast Cam had likely had a pretty high glycemic load. In other words, it's not surprising that he went high (why all the other issues, I don't know). I don't mean to sound critical - I know this is frustrating.
Unless you are in a low BG situation, slow absorbing carbs are good, fast absorbing carbs are bad. My rule for what makes a "good" slow absorbing carb food is that fat + protein should come close to the amount of carbs. Among the things I give my daughter for breakfast: eggs (no carbs, lots of protein), whole milk (8 fat, 8 protein, 12 carbs = AWESOME!), low sugar yogurt, double fiber bread + butter or cream cheese, lara bars (fruit, nuts, no added sugar). I keep lists of what works well and what doesn't. Doing some research on Glycemic Load should give you a jump start on what's good and what's bad - you learn some interesting things like that apple juice has a very high glycemic load but apples have a very low glycemic load.
Becoming an expert label reader is very important. The differences between good carbs and bad carbs are shocking and I'm sorry that your support team hasn't helped you in the way they should. Obviously your son has other complications with the infections and diet won't help fix those things, but maybe some adjustments to your son's diet can smooth things out in the future. Best of luck to you.
This is very good information. My daughter also only has juice when she is low and we've had to completely eliminate cold cereal and milk for breakfast. We've tried all kinds and she goes sky high from all of them. Obviously, Shant's son wouldn't go into DKA from a breakfast spike in BG - even if it is daily, and she is using 200 strips/month, so surely she is catching and correcting for high BG between meals. I agree, though, that moving his diet toward slower acting carbs may help smooth things out a bit and help to identify what other factors are causing such problems.
I am so very sorry you are going through all this. The doctors can be horrible sometimes, and in my experience they do tend to blame the patient (or the parent of the patient) when things do not go smoothly. I have a question for you -- is it possible your child has celiac disease? About ten percent of t1d patients have or develop celiac, and it causes problems with blood sugar just like what you describe. It can also make the kids get sick more often. My kids are tall and not at all thin and turned out to have it anyway (even with no obvious stomach upsets or other obvious signs). My son with t1d was screened for it in the hospital when he was first diagnosed t1d (and was in DKA). He screened positive for celiac (TTG positive) but the hospital and medical group there did not bother to let us know, and we did not find out until changing practices, and the new docs asked to review all the records including hospital record. We could not get him biopsied fast enough (there were mishaps along the way) and he ended up going gluten free without the biopsy. Within about two weeks his blood sugar became very very easy to manage. And two and a half years later he is still producing some insulin so needs lower doses. When he gets glutened his blood sugar goes CRAZY. FIrst he goes high (for several days) - his body responds as if he is sick (which he is, from the gluten).No amount of insulin will bring it properly under control. Then some days later he runs lows as his digestion is messed up and the doses of insulin are not meeting the (undigested) food. He needs about a week to recover (for stable blood sugar) after any accidental gluten ingestion. The other thing -- younger brother turned out to have celiac too, and he used to get sick all the time (strep, pneumonia, ...), but no longer on the gf diet. SO although the diet is a hassle, life is much, much easier for us now. Not to be pushy (sorry if I am) but I hope you can get the possibility checked out, as it could make things much easier for you. And I would not put it past the docs to miss the diagnosis. Type 1 diabetics are at much higher risk for developing celiac, so should be screened regularly (every couple years) even after a negative blood test result.Don't assume the doctors have been staying on top of it without you pushing for it.
Good luck to you and your child. I am so sorry they called social services. It is just awful. Question -- it looks like he continued to have high BG even after spending time in the hospital? If so, the doctors if they had any sense at all would figure out what you are up against, and that his BG is just extra difficult to control.
If you want to have them test for celiac, it is a blood test. They really ought to have screened your child already, and should be re-screening regularly. But you probably have to ask for it. Tell the doctors to quit blaming you and try to figure out why your child's blood sugar is so difficult to control, even when your child is in the hospital.
He does have the stomach issues.Trent was tested for celiac and Barrettes when he was having stomach problems. I never considered Cam because I always linked it to ketones. I will call his pediatrician today.
We have been dealing with this for 4 years now. We have read every book, taken every class, attended every group we ca find. I make my own granola so I know what is in it. I have another child with severe allergies to wheat, soy, corn, seafood, nuts,and rice.Every meal I make is thought out from beginning to end.His blood sugar was that high because he ended up with strep again. PICU never looked down his throat; we found out after we left the hospital and went back to the pediatrician.
I don't have any specific advice or steps. Sounds like some of the other contributors have given you great track to run on. I would echo what they said about diet and breakfast choices. Cereal and milk used to make a mess of his BG's (and I'm talking Cheerio's or Crispix with skim milk). Now's better. For some suggestions, here are some of the things he likes for breakfasts: peanut butter on toast, scrambled eggwhites, breakfast turkey sausage links, an apple, dry cereal (no longer a problem), some chicken salad on a piece of toast, strawberries. I can't say they are all great from a textbook glycemic perspective, but his AM post-parandials are usually OK.
I think it's great that you are reaching out to a support group that can really empathize with what you are going through. How about your son and the rest of the family? How are they holding up through all of this?
Wouldn't it be great if this could be an answer for you? Not great to have celiac, but if you could have a solution!
I think Trent is suffering through it as well. He has syncope and 6 major allergies, so he usually comes with me unless it is during the school week. I think the stress causes more episodes of passing out for him. His diet is more strict than Cam's due to his allergies. Cereal does not generally bother Cameron.They are not looking any further than diabetes and neglect. I keep asking them to find out why he continues to get sick. If they can control the infections the diabetes will fall back into place. I have dealt with his diabetes for 4 years now, and have had good control until the last year or so. That in itself should tell them something. I didn't just wake up one day and decide to start neglecting my child.