Hello, I am new to this and have alot of questions. My son is 14 and was diagnosed one year ago. What a year this has been! He had very good control over his levels for the first six months. Then we got the pump. Did very well until recently. Now he has very low low's we have had to turn off his pump four days now in March and April. For about 4-5 hours he eats like he is normal and takes no insulin. I dont understand how that can happen. The dr.s just say that is diabetes. Just this week. He had three low days. I work in a school so he went to school with me. Then he had one high day 200-300's. Now he is back to perfect.
He says he has no appetite so he doesnt eat three meals a day. So I bought him those drinks for diabetics. He drinks one for breakfast and one for lunch. Then he eats when he gets home from school and then dinner.
Some days he checks his sugar once or twice if he is away from home. I talk to him about it. We are very close. I send him text all day to see how he is at school. He is in 9th grade. He is in honors classes so keeping up is very very hard. He misses alot of school. The teachers are not that great at helping him make up the work. We have a 504 but they dont always stick to it. So he is stressed at school. After being out for a few days he walks into class and the teacher will hand him a test. On stuff he hasnt even covered and makes him take it. So his grades are not so good sometimes. He is sooooo smart this is ridiculous.The school does not treat this like it a disease. They think he should just be there no matter what. But when he is high he is sleepy and cant concentrate. When he is low he is not payint attention either. I send him some days and have to go back and get him. It seems like he does great for a few weeks then he will have high and lows and then go back to being ok. When he doesnt do anything different.
His dad is not involved. He didnt go to his pump classes. He doesnt have a clue what to do to help him. He cant seem to handle it. I think he needs to grow up and be a adult and support his son. So we are getting ready to go through a divorce. Which will just be another stress for my son and I.
I try to worry but I do all the time. I hate seeing my son in pain. I hate seeing him think he is different. His friends are great about it. So that is good. He has two older brothers but they are in college. So they arent home all the time. Then I have a six year old daughter who had a shock when he was diagnosed because he got much more attention.
This is such a hard thing to live with. Now I will be a single parent and dealing with. Which I do it all now anyway.
Any suggestions on why he is having highs and lows? Or test that we need to have done.
I can sympathize with what you are going through too. My 9 year old was diagnosed in Sept and I feel like every day is a learning process. Her school has been fantastic however...she keeps her supplies in the nurse's office, and the nurse has become a friend...not only is she terrific with Mac, she calls me just to chat about how things are going and so on as well. I am very grateful to her.
As a high school teacher myself, I would recommend you contact your son's teachers personally, and explain to them the situation. If they are like I was before my daughter's diagnosis, they have no idea what being diabetic really entails, and hearing from you what it is like for him will probably help. Also, as unfortunate as it is, you cannot necessarily trust the administration or even the nurse to explain to the staff what you son really deals with....it just depends on how good of a support staff is there. I would suggest calling or emailing each of his teachers individually, explaining the situation, explain how important school is to your son and that he will continue to do his best....but that you are asking their support as well. Most of us educators respond really well to that. Then if worse comes to worse, you can remind them of his 504 and demand that it be followed...it is obviously a valid point, but I would try the "Hey, I am counting on you to help us out, and I want to explain to you why" course of action first; the old adage of getting more bees with honey than vinegar.
By the way, I am also a single mom dealing with this, and you are right, it is not easy. My daughter's father is involved from the standpoint of custody-we share it 50/50 at this point...but he has done nothing to educate himself about diabetes or her needs. In fact he spent the whole 3 days she was in the hospital at first diagnoses saying things like "I am too old to learn this" and "I can't figure all this out". I am anxious to get her on the pump but scared he will not learn what he needs to help her. Her blood sugars have been in terrific control with me (knock on wood) but the days she is with him, she has some really high highs...300s and so on. I know that can just happen but it just seems to happen there (At my house we are very into healthy eating but not at his). Hang in there...I know divorce is never easy but it sounds as if you are taking the steps needed to take care of your kids. That is what is important. Best of luck...feel free to email me if you want to vent!
Thank you sooooo much. I will do that. I counted on the school to inform eveyrone. We did the 504 meeting and some of the teachers didnt stay the whole time. I sent a letter of detail to each teacher then found out the nurse did not give it to them. So I will do what you said and contact each teacher myself. I have learned alot for next year. We only have one month left this school year.
I know how you feel. My husband is clueless. It makes me soooo mad. When we fight he says he will take our six year old but never says anything about our 14 year old with diabetes. As far as the pump goes. When you get the pump you have to go through classes before they will let you use it. So he would have to go to the classes. It is very easy to get used to. My son loves it. It gives them a little more freedom. You change out the insulin and sight every 3-4 days. So depending on how many days at a time your daughter is with him you may be able to change everything out on the days she is with you. My son is older and does it all himself. I just help sometimes and remind him to do it. It is alot to learn. But we did it when they were first diagnosed so we do it again.
Again thank you so much. It is nice to know I am not alone! It feels like is sometimes.
You are definitely not alone! I am also a single mom. I have been separated for a year and a half. My son was diagnosed last year in March when he was 8.
I feel the same way. Even if my husband and I were still together, I would still be doing everything myself. I have 3 other children ranging from 6 to 14 years. It has been a very stressful year. The highs and lows with the numbers are so difficult because you feel like you are doing everything right and they just appear. Two weeks ago I was fighting the lows, last week it was highs. When I ask my son's Dr , he say the same thing - that's just diabetes. I ask when will he start to become more consistent in these numbers and he told me when my son is in his early 20's. That is when he will stop growing. He also said the teen years are really difficult with ups and downs because of all the hormones.
My son attends a small private school where there is no nurse, so we have had to work all this out on our own. I have found that the people at school just don't get it because they don't have a child with this disease. I have had to go in there 2-3 times every week because they have made mistakes in handling things. At the suggestions of a member of this group, I gave my son a phone to bring to school. He calls me and gives me his numbers everyday and I tell him if he needs extra snacks or whatever.
I do sometimes feel like I am alone in this with my son, but this group has been such a wonderful resource for support and information. I have learned so much here and know that I really am not alone. Please feel free to contact me any time. You really are not alone in this.
hi Tcicero , Juvenation just recently gave us a new group--Parents of Teens with Diabetes--hope you will join and maybe find some parents with teens on pumps .My daughter is still on MDI , for now....I remember that first year as being extremly hard and life changing. I made sure all teaches got copies of a sheet I printed from one of our d books.That way they knew what to look for. I had a good group of teachers that looked out for her along with a Principal that allowed me to come to the school everyday to bring her a shot and ck her sugars.--she did these things herself-but I was there.She was 12 and this was new to us... I found when you hit Jr.High and High School that teachers expect more of you..her,I should say...I had one teacher tell her that her husband had d and she knew all about it-then told her to get her blood sugars in order.Not much give from this one teacher.She did allow some test to be taken over-but not much slack.We just all keep trying and we are going to make progress....
My son was diagnosed 2 1/2 months ago at age 8. I cried for 13 days straight. I would not accept any help with anything really b/c the fact was that I was the mother and no one would pay attention to detail as much as his mom would. And certainly I did not trust anyone with his life in their hands. I was overwhelmed to say the very least. And I too was on the verge of a divorce. He did not go to the first two appointments b/c of work (which I say work is not near as important). Plus I would not tolerate dad disciplining our son any at all. I thought that my husband was inconsiderate and did not understand the seriousness of the situation which completely pissed me off. All we did was argue constantly. In fact we argued more in the first 6 weeks than we had during our whole marriage. I was ready to divorce him too. However, I was determined to not allow another hardship on our son and trudged thru.
A friend who was a mother to a child with Diabetes told me what she thought my husband was going thru. She thought that he was mourning the loss of his healthy son. For some reason that clicked with me. You know this was his buddy and dad felt helpless with the disease and certainly me pushing him away to mourn by himself did not help. I found out that he was speaking to others all the time trying to gather information on his own. I did not know that, all I knew was that I was drowning myself in books and books of information. Finally, after trying to encourage my son to let dad give him his shot he let him. And apparently I can no longer give him the shot b/c dad does a much better job. It was a huge relief on my part. I still count up the carbs and measure out the insulin and my husband chims in. I would try to explain to my son why dad is distant even if you have to lie. It will add some comfort to your child to know that it is not b/c of his diabetes yall are fighting or may get a divorce. You son would feel horrible.
As for you sending a letter to the teachers. I would say plan a day to meet with each individual teacher during their planning period. Come prepared with literature that perhaps they will read over and you can self disclose about your experience and it will touch some of their hearts. Just a few things of importance in a folder for them to keep. Maybe ask your doctor to write a letter or nurse from your endo office explaining how diabetes effects your childs performance in school and the doctor saying he would appreciate their support and to please call his office with any questions.
Numbers all over the place. Remember that stress, hormones, excitement, exercise, are only a few of the things that affects numbers and you certainly can not test for those things. plus the honeymoon phase of sometimes pancreas works a bunch then sometimes is lazy. My newest approach with the numbers after my son checks his bs. Is that when he says a number regardless of what it is I try to have the same reaction which is that its good no matter what the number is at least we have a number. I have heard that a child may reflect high numbers or low number as good or bad and then reflect good or bad to them being good or bad. which we do not want. So I laugh and say alright we got a number.
As for your son feeling different. It is almost vital that you find a mother with a child close to your sons age for him to interact with. So he will not feel alone. We are going to a diabetes walk in two weeks. I am so excited for him to see so many children smiling and going thru the same thing as him daily. Plus my son will be attending day camp in August.
You have found a wonderful site. I wish I had found it the first night of diagnosis.
You may want to check with your endo to see if they will set your son up with a 3-day Continuous Glucose Monitor. It takes readings several times an hour over the three-day period, when you turn in the CGM the endo can look at the readings to see what the BS is doing between finger prick tests.
Our son (8) is also going through some whacky numbers. Going from 300 to 44 inside of two hours. Corrections aren't bringing his numbers down. Certain foods, like bread and cereal, are suddenly causing his BS to skyrocket, though they didn't before. As our CDE says, "It's called growth." Just gotta roll with it and adjust as frequently as it takes till they settle back down.
Yes, it is great to know we are not alone. My son is very very low right now. At school he was 34 and was pale and his lips turned blue. That night he woke me (by text) at 2am. He was 43 pale and sweating. Took about an hour to get him. THen he runs low during the day and goes up in the evening.
He goes next week to a test. Ahts something like that. Unfortunately I have a court date that day and cant take him. I have a good friend who's has a son with diabetes that will take him. This is tearing me up because I always take him!!!! What if they find something. He needs to be with me. As much as I love my friend he needs his mom. So I am trying to fix that!!!
He is in high school so he carries his stuff with him. And yes he has a cell phone. I text him all day to check on him. WHen he is really low I work in a school so he goes with me. Thank goodness my co-workers are so awesome. It is very frustrating to see our kids sick. And I doubt myself sometimes as to if I am doing eveyything. Did I miss something? It is hard. Without friends to talk to I couldnt make it. Thank goodness I have one whos son is diabetic and I drive her crazy.
Good luck with everything. Hang in there. We do have good days. And maybe they will come up with a cure soon!!! We can all pray for that.
Yes, He is in high school and that is the problem! They say well other diabetics keep their sugars in order. Well he is not other people!!!
The nurse had the nerve to tell me that she thinks he is making himself go low!!! It was all I could do to keep my cool. So now he wont go to the nurse for help. He was low yesturday and would not go to see her. I keep in touch with him through text. So I talked him through it. It is a shame that she has alienated him instead of making him feel he can trust her.
There is alot going on at home too which doesnt help. But he is going for some testing next week. I just pray there is not something else going on. He is having very low lows. We turn off his pump sometimes for 4-5 hrs. He eats and it goes up a little then drops back down. So it is scary and frustrating.
I agree. I think his dad cant handle it. Where I just chose to take care of my child and cry in the bathroom. It is very hard to see your son sick.
I have four children, two in college, 14, and 6. So It is really hard. And I am like you I do it all myself because I dont trust anyone else.
My son has a cell phone and I text him all the time to check on him.
We are now going through a divorce. What a mess!
My son is going for some test next week. The hardest thing is I cant go that day. I have to be somewhere else. But his doctor wants this test done ACH soemthing like that. I have it written down. So I have a very good friend whos son is diabetic and she is taking him. WHich kills me. I am mom and I should be there. I have never not been there. I am trying to fix it so I can.
He is so low this week it is scary. One day at school he was 34 he was pale and his lips turned blue. Then that night he woke me at 2am and was 43. I thank God he woke up because the what ifs kick in.
This group is great.
I am going to look for a support group to get in with. So yes, he can find other people his age to talk to about this. His friends are great with it but they dont have it.
Thank you, It is really great to know we are not alone!
I hate to share this but I have had this disease for 30 years now and unfortunately this is something that just occasionally happens. My daughter is also diabetic and she has had an occasion or two where we have to turn her pump way down or else she is always low. I have come to call this "a diabetic thing" which we cannot control. I can't explain it and the doctors can't either, but it happens to all diabetics at some time or another. You just randomly have days of extreme low's or highs regardless of what you are doing. Do the best you can by testing frequently and I would suggest getting a 504 plan in place at school because they cannot hold his diabetes against him because it is a protected disability and you could get legal action taken. good luck!