Last night was the first time I checked out juvenation. My four year old son Alex was dx almost 5 months ago with T1. He handles it so well it's amazing and I was doing pretty good just doing what we had to do. But I'm starting to freak out about the flu. He goes tomorrow for regular flu shot. Still waiting for H1N1 shot to arrive but having serious concerns about it's safety. Wondering what other parents think about it. He goes to preschool and I wonder if I should take him out. But his twin brother goes too and 6 yr old sis goes to first grade so they'll be bringing germs home so is it worth it? I don't want to home school, don't believe in it but the flu scares me to death.
(This is gonna be long - sorry!) So, while reading last night I saw so many parents with multiple children with T1 and I started having a hard time breathing. Do you all have a history in the family? We don't have a history of T1, so how worried do I need to be about my other two children? Alex has an identical twin brother and the endo said not to worry, but of course I do.
So, I finally ripped myself away from the computer at 3:00 am and tested Alex before bed and he was only at 77! Had to get him up to eat. He was 134 before bedtime snack of ice cream, milk & lunchmeat. Endo said this was great snack because of protein & fat to last long and he really does so well on it that I wouldn't have tested him if I wasn't freaked out by reading so much last night. So I brought him to bed with me and got no sleep.
Somebody talk to me, my husband just says it'll be fine, don't worry.
My four year old Michael was dx last December. I can't believe we're coming up on one year. He also handles it very well, he's so brave. I have three children and no history of diabetes in either my husband or my family. Myself, my husband and son were all tested through a clinical trial at our endo office which didn't give any indication that we are likley to develop diabetes. Maybe ask your endo if your family can be tested. I have yet to test my daughter as she was too young at the time. I do have a friend who has one child with type 1 and is currently caring for her other child with oral insulin in attempt to prevent or delay his development of diabetes. He also took the test which indicated he will evenutally have type 1.
I love this website and eveyone tells you it gets easier and it really does. My son is now on the insulin pump and it is so much better than the shots, he hated them, me too. It's strange how things progress too. At first he was having frequent lows at night and now he runs high.
As for the flu, we all had the regular flu shot. I have mixed feelings on the H1N1 too. I'm a big advocate for washing hands, even though they complain non-stop. My boys also go to pre-school and love it. I think I'm going to check with my Pediatrician and Endo for advice on the H1N1.
Not sure if I helped. My husband is the same way, the ever optimist, and I'm the one lying awake at night just staring at my son.
Thanks for getting back to me. Your story sounds remarkable similar to mine. I will definitely talk to endo about the clinical trial. I actually just registered for some clinical trials. I have identical twin sons, one with diabetes and one without it. Thought that might be informative.
I am interested in the pump, but I'm really squeamish about inserting it. How bad is it? I guess I was squeamish about needles only five months ago and now I'm a pro. Amazing what we can do when we have to!
A new diagnosis is so overwhelming - there's so many new things to learn, emotional spirals about your child's health and the huge adjustment to a new medical regimen. You're afraid you may miss something. You doubt if you're doing the right thing. I would imagine having a twin must compound your worries even more.The research out there currently indicates a higher CHANCE of developing type-1 diabetes for siblings because they may have the same genetic predisposition for the disease. The chances are higher for an identical twin, but it's not 100%.
My family had the genetic cards stacked against us. My wife's family has had type-1/ juvenile diabetes in the family for 4 generations. My mom has type-2. The doctors and scientists know some things about genetic predisposition, and they continue to make progress. But the thing is- they suspect that certain environmental factors also play a role. It may be particular viral infections or some types of stress - no one knows for sure.
There's still a big mystery to the specific triggers that cause the autoimmune response that causes insulin dependent diabetes. One thing that my family took part in was a clinical trial after my wife was also diagnosed with type-1 a couple years ago. It was a pretty satisfying (but hard) experience for us since she was able to take part in some cutting edge therapy and feel that we helped with the general advancement of scientific understanding of the disease. If it's something that interests you can check out what's available for your son(s) at https://trials.jdrf.org . I also wrote about the trials site on my parent's guide to diabetes blog if you want to learn more.
I can tell from your post that you and your family are giving Alex amazing care. You can - and are- handling it well. It'll be fine. Don't worry.
These first few months are the hardest, you and Alex sound like you are doing very good.
My son Lucas was dx at 37 mo. he is 6 1/2 now. He is the middle of 3 boys and is often mistaken as a twin to his 8 year old brother. We have no history of T1 - it was a total shock for us as I was not even aware of the symptoms of the disease. We also chose to have his brothers and myself tested in the clinical trial to see if we had a higher chance of developing the disease. We all tested negative - so I try not to worry about them too much.
As far as middle of the night lows. Yes, they are scary. We do not have a continuous glucometer yet so I do a 10pm and 11pm check. This way I know if he is rising fast or falling fast if there is a big difference between the numbers. I also do a 3am check and we have a baby monitor in his room. Lucas is on a pump - they make really easy inserts, I think they are easier to do than needles but they do hurt a little more I think. He has less lows in the middle of the night on the pump unless he swims (which he does 2 nights a week) or does something else very active. More often we find we are fighting highs at 3am either due to growth spurts, a cold - who knows.
So sickness - Lucas' numbers are crazy when he is sick. It also takes him much longer to get better again than the rest of us. As a mother of 3, I don't think you can keep germs out of the house entirely - besides, just the other day I was in the store and Lucas was licking the handle to the grocery cart (It is mouth height for him)! Anyway, even if I were to home school him, I could not keep him from getting exposed if he is going to go and do that. We all get the flu shot and will all get the H1N1. I feel there are risks but I trust my dr. that the risks of not getting it are greater for Lucas. Sometimes I think the fear of Lucas getting sick is worse than when he is actually sick.
Your husband is right though - Alex will be fine. Partly though because you are worried and taking such good care of him.
My son, Collin, was diagnosed last November when he was 6 years old. He has handled things amazingly well. I also have times when I think, OK I got it...I know what we are doing and we are doing it well. And then I something happens and I realize I do not know what I am doing. I get overwhelmed and want to quit. But we can't quit because we are mommies (and daddies :) ) and we will got to end of the earth to make our kids happy and healthy.
I am also very nervous about the flu. We get our flu shots this week. I am still on the fence about the HINI vaccination. I am going to watch him for any little symptom.
I have never heard of the test for siblings. I will absolutely be asking about it at our next appt. I do check my little girl's sugar once every 6 weeks or so. Poor girl goes potty more that a few times a day ... check. Asks for a drink of water...check. :)
The nights are still scary for me almost a year into this. Our endo also told us that ice cream is a good bedtime snack.
While it does get easier, there are always hard times. You are doing a great job.
Thanks so much everyone for your thoughtful replies. I just had my reply all typed out and my son hit something and I lost it all! Here goes again - I think I'm getting even more worried about bedtime lows now. It's just like when I brought my kids home from the hospital when they were first born and I worried about SIDs. Except now I can't just jiggle them to make sure their ok! It's so hard that you can't tell by looking at them. I think I do need a CGM because I just want to poke the poor kid all the time and I know I can't.
I was just checking on Alex at night if he was low at bedtime or maybe a few times during the week at aroud 1 or 2 when I go to bed. I'm thinking it sounds like I need to be checking more often. What is a good snack to give him if he is low in the middle of the night? I swear we were up at least a half an hour eating his snack the other night!
I find 'fruit snacks' are the best thing for treating lows pretty much no matter what time of day. But they get my 4 yr old sons BG up pretty fast (within 15-20) min so then we can go back to sleep. Probably not good for his teeth though! But I like to think that the extra sugar stuck on them will eventually get absorbed in his mouth. ;) I have talked to others who use frosting and I found that just makes big mess in bed, get all over his face/hair. I won't use juice for middle of the night lows anymore because it can take too long to improve BG and I just want to go back to sleep! Look for or ask your dietician for a list of high glycemic index foods as these will raise BG the fastest.
I don't do a lot of middle of the night checks. I do it when we have had an active day or a very out of normal schedule (like really late bedtime, company over, etc.). This seems to cause my son to go low in the middle of the night. But for the most part he is normal when I check on any random night at 3 am. I also look for if he is approximately the same BG when he wakes up as what he went to bed as on nights I don't do a middle of the night check.
We've been very lucky with Cassie's reaction to juice boxes at night. We go for juice, because she can usually drink in her sleep without coming fully awake and it's convenient to keep 1 or 2 by her bedside.
We're also fortunate that she wakes herself up if she's experiencing a bad low. We keep a baby monitor in her room to alert us if there's any trouble.
I am not sure I can advocate doing as many checks as I or someone else does - you will naturally grow to where you find is the right number to keep his numbers steady and you don't drive him crazy. I have found Lucas' sugars are all over the place at night so he needs the extra checks at that time. On a normal day he has about 10 checks total but they are clustered often during his "problem" times of day or around an activity - i.e. before he swims, after he swims, two hours after he swims.
Lucas sleeps through his checks and also sleeps through drinking juice from a juice box! He never chokes he just sucks on it as soon as I put it in his mouth, I don't even sit him up or try to wake him. I find the juice boxes work well. After 3am his numbers seldom drop as he has a serious case of "the dawn effect" where bg rises with the sun. He uses skittles during the day - they are 1 carb each and each carb raises his bg 8 points - that is as long as he is not free falling.
I am sorry that your son was diag with type 1 diabetes. You all can get through this though keep positive as much as you can. In our family we have no family history of type 1 diabetes. The risk factor goes up once you have a sibling with type 1 diabetes. My oldest son was 10 he was diag 12-12-06 my daughter was diag. through a research study less than three months later she was only 3. We found out last year my youngest son has three autoimmune markers for type 1. We take life one step at a time there is no reason to try and second guess why this happened or when my youngest will be diag. We still have so much hope that one day there will be a cure. It was hard hearing that my youngest would eventually have type 1 you know the guilt how did this happen was it something I did. I know in my head there is nothing I did to cause it but every once in while I still wonder. I am glad I know the risk my youngest has we enrolled him in another study to try to prevent or prolong the diag. I am also glad because like my daughter my youngest will not spend the first few days in the hospital if and when he is diag. I know what to watch for the doctors know his risk factors so he will not have the trama of spending time in the hospital away from family and friends. So I hope none of your other children are diag. if they are you will find some way of getting through this too. I hope this helps a little.
My son is 9 and was dx this past March. My endo told me not to worry about the H1N1. That it wouldn't be any worse than the seasonal flu. That, however did not help me to stop worrying. I was worried about getting the vaccine and worried about not getting it.
A week and a half ago my 11 year old daughter who has asthma got sick - cold, cough fever - I took her to the Dr and they said she had the H1N1 flu. They told me to bring my 3 other children in right away to get them vaccinated (luckily they had received some of the vaccine early). At that point I didn't even think twice about it. I just wanted them to get the vaccination, especially my son(he has mild asthma as well).So far my children have had no side effects from the vaccination.
They put my daughter on Tamiflu to try to keep her from getting pnuemonia. She is fine now. It didn't seem to be any worse than the regular flu for her. My other daughter who is 14 also had the H1N1 in June and had a history of pnuemonia. Her case was no more severe than the regular seasonal flu as well. I think we have been very lucky. It is so scary though how hard it is hitting young people. It seems to be spreading fast in my daughter's high school right now, but all the kids that have had it, have recovered and none have been hospitalized.
Also, we had no family history of T1 or autoimmune diseases. We were totally shocked. Our Dr also says don't worry about the other kids, but every time one of them goes to the bathroom more often then usual, I panic. I know there is nothing I can do to prevent it, so I try not to worry and just watch out for the signs. Worrying often just steals so much of my time. It seems like most of the things I worry about are never as bad as I imagined they would be.