I'm terrified!

General
1

I'm new to this site and I am the mother of my type 1 diabetic 7 year old who was diagnosed 2 days before Christmas. So far there have been no complication with this disease, but I am finding it really hard to control her glucose numbers. This has turned our lives for a loop but we try everyday to see past the scary stuff. I still stop and wonder why her, but she is a strong willed child and out of my 5 kids she will have handled this the best.

Her doctors say she is still in the honeymoon phase so I am thinking this is why I can't get a handle on the ideal numbers. Mondays lunch was 18mmol/324mg, Tuesday lunch was 16mmol/288mg and a scary thought... todays lunch was 1.5mmol/27mg. So my questions is this, how low does someone have to go or what is the lowest someone has tested before they go into shock or worse, a seizure.

I'm completely terrified of what happened today at school. My daughter called me because she was scared, and so was I. Her teacher forgot to stay with her for the test so she left the classroom and went to her sisters, which was a walk equivalent to half of a city block. I was mortified when I heard this. Since its the beginning of the school year and new parent was supervising the class for lunch and let her go. I can't get it out of my head what could have happened. I'm furious about it and wonder how safe my daughter really is at school.

I hate that she has to go through this for the rest of her life! We don't know anyone else that is type 1, so we don't have anyone to talk to about it. We have family members that are type 2 and it is frustrating because they are older and must have different information that is not updated because they all think well she just can't eat sugar or they say she will be fine if she eats this cake I made it with splenda. Its tiring telling people that its not about the sugar its about the carbs and scheduled eating times.

UGH!!

Some reassurance please!!

Sandra

2

You have got your hands full with 5 children and one being a newly diagnosed t1.  I was diagnosed at age 4 in 1954.  Certainly I don't remember a whole lot back then.  I do know I had seizures many times when my mom would hear me thrashing around in bed.

With her numbers high, then low, it is so difficult.  BS testing is the key.  The more the better.  Sounds like you will prefer her to be a little high when she is at school or away from you until you get it all figured out.

 

 

3

Hi Sandra~

I have some very good advice for you.....do you have a 504 in place for your daughter? If not get one NOW! I have son who is 5 years old. he just started kinder less then 3 weeks ago. It is very....very....very....scary to just send your child off to school and not know if they are safe! I would be very happy to talk to you over the phone. I have alot of information. I worked very hard with the school nurse and the district. My son has a full time LPN that stays with him at all times! It is wonderful! Although he is much younger then your daughter there are diff things that can be done to make your daughters school experience safer. I have been blessed to work with a WONDERFUL lady from the ADA. Her name is Anne Dennis. I will be happy to provide you with her number too. Her son has type 1 and was dignosed when he was I think 4. He is now i believe 15. She lives here in Phoenix too. But she is a world of information! If you call her and tell her I sent you to her she will help! I promise. And if you would like to talk to me please....call me...I know its tough....Anne Dennis 602-861-4731 ext 7096. My phone number is 602-373-8809. 

Good luck! 

Elizabeth Gabriele ( mom to Maxx 5yrs old...type 1...10-22-09)


4

Hi Sandra,

Your daughter will be fine. My sister was diagnosed about the same time as her. It would be a lie to say that it's easy and everything. I don't want to speak for anyone else on Juvenation, but I still find it hard to manage my  numbers to what I would consider 'ideal' as well. I aim for between 90 - 120 but after cutting carbs almost completely, have been all over the place.

Having only been dx'd for about a year, your daughter's insulin/carb ratio and basal rate might not be perfect yet, but that's what the Endo appointments are for.

As far as low glucoses go and "when" someone will pass out or seize...I think that it varies on an individual basis. I've never passed out from a low and I've been way down there. I know people who will pass out if their glucose gets below 40, so that's just something you and the school should communicate about regarding procedures. Do they (or the school nurse) have education regarding the use of a Glucagon in lieu of calling 911?

It'll be a test for sure, but you two will come out of it in one piece...maybe a little gray, but still in one piece :P

We're all here if you need to vent or have questions.

Good luck :)

Pat

 

5

It'll be rough at times and other times you're going to find that things get real easy. Diabetes is a constant roller coaster because it's not an exact science. So many things can affect her numbers even if you calculate her carbs to the exact number.

Lately I've found myself running at a constant 200 or above. So, when my blood sugar is 90-120 I feel like I'm about to pass out because I'm not used to having good numbers. As for the low blood sugars, I've been below 20 and still "functioning", not very well but still functioning. For everyone it's going to be different, that's another reason why diabetes isn't an exact science, because everyone reacts and handles things differently.

I also agree with, if you don't already have one, getting a 504 plan. You can meet with the teachers at your daughters school and tell them that it is very serious that they pay attention to what's going on with your daughter, they are responsible for anything that happens to your daughter while she is in their classroom. If they know that your daughter is diabetic and they just let her walk out and she winds up passing out, they are at fault for what happens to her.

Another way to help your daughter with this is to be strong for her. I know it's hard at times. My biggest problem is when I see my mom worry about me. I was 19 when I was diagnosed and it upset me to see my mom crying when I was in the hospital. Which in turn affected my blood sugar because I was getting even more upset than I already was because my mom was upset. I know you are always going to worry, I'm not a mom but I know it can't be easy sending your child out into the world on her own. I love when my mom is encouraging and tells me she's proud of me, at 21 it's still something I look forward to.

I hope things get better for you and your daughter. We're all hear to help any time you need to vent, complain, or just talk!

6

Hey Sandra,

While I realize that I am not 7, and I am not as reliant on my mother, I am in somewhat a similar situation as you guys, as I was diagnosed with type 1 in May.  I am 17 and a senior in high school, but I am also in a "honeymoon period" as they call it.  My insulin doses are very low: I am only taking 13u of lantus and 2u of humalog in the morning, and I take 6u lantus and 3u humalog in the evening.  I do not know if your doctor would approve the splitting of the lantus into two different doses at different times, but as long as I accurately count my carbs, I can usually keep my BG in a range of 80-110, oftentimes even 80-100.  My grandfather has had BG levels in the 20s and 30s and hasn't passed out, but it really depends on the person.  Other times, he has passed out in the 20s and woke up with emt's around him.  There is no set level where your body just shuts down.  It must be stressful knowing your daughter is at school and not being able to know what is going on all the time.  I have a brother the same age, and if he had diabetes, I would worry too.

In my opinion, some of the most important things I would recommend are making sure both you and your daughter are aware of what you need to do in any given situation, make sure you are accurately counting your carbs, even if you have to use measuring cups or a food scale, and keep frequent contact with your endocrinologist/diabetes educators, whether by email, phone, or a combination.  Also, keep in mind that if her BG levels are inconsistent, her insulin needs may be over- or under-compensated, or her insulin needs may be changing.  Keep a BG log and a food log with carb countsif necessary so the doctor can make sure she is getting the right amount of insulin.  I know it can be frustrating; it sure was after I was diagnosed.

About the incident at school, my opinion would be to just talk to the teacher/parent and make sure your daughter understands the classroom is the safest place to stay.

And lastly, any person with diabetes today gets hounded with questions and criticism, and it will doubtlessly never go away.  Oftentimes people around me think that eating a chocolate brownie with icing is going to kill me, but I constantly have to explain that as long as I observe my carb intake, nothing is really out of reach (as long as I watch my portions).  Some people can even come over as rude without really meaning to, so just remember: most of them are just concerned for you (or your daughter) and are just trying to help, even though you are often more educated than they are.  In my opinion, every time someone asks me something about my diabetes, I feel that I should embrace it as an opportunity to educate and spread information about diabetes.

I may only be a 17 year old guy trying to juggle extra-curricular activities and AP classes in high school, and I've never had a child (though I am the eldest male in the house to my 10 and 7 year old siblings), but I am really passionate about my diabetes, and I want everyone to know that it is possible to manage it.

Sandra, I am sorry you are having some tough and stressful times with your daughter's diabetes, not to mention raising 4 other kids at the same time.  While managing her diabetes is difficult, it will get easier to manage.  I will be going on a pump very soon, and maybe that could answer some of your problems in the future.  I really hope this was helpful, and good luck!

 

7

Sandra, I can certainly understand why you were terrified. You might have more responses if you also posted on a site that was especially created for parents of diabetic children. Here is the link:

http://www.childrenwithdiabetes.com/

I wish the very best for you and your daughter in the months ahead.

***********************************************

I see some of you are posting your email addresses and phone numbers. That is a very risky move. A member on another diabetes site posted her phone number, and she started having crank calls. They knew her name and where she lived because she had posted that information on the site. She had to change her phone number. She posted what had happened on the site and then disappeared, never posting again. On some sites, moderators will delete phone numbers when they are posted, for the safety of the members. Emails are less problematic, but a lot of undesirable email is not good.

8

Richard brings up a good point about privacy.  Juvenation, while aimed towards the diabetic community, is a site viewable by the general public.  It is of course your choice to post personal information online, but you may considering doing so with a private message "Start Conversation" so that only the intended recipient sees it. 

9

Maybe the moderator could delete those messages with telephone numbers and send them a private message with the warning.

There is another forum I have run across called type1parents.org that might be helpful.

Sandra lives in Canada so there are different laws there. 504 plans are American.

Those units seem difficult to understand with the variable units. How confusing.

10

Sandra,

I understand you fear and frustration.  Our daughter, Baylee, was diagnosed 3 years ago when she was 10 years old just two weeks before school started.  We were stuned because no one in our famly has T1 just T2.  She is also our strong willed child and she has the personality to deal with it out of our 3 kids. 

Baylee took a year before she was out of her honeymoon phase (and sometimes I wonder if she is still in that phase). While in the honeymoon phase, there will be no consistency...there is no easy way of putting it.   We told Baylee that it was very important that she become very aware of her body and that it will send her signals of when she is high or low (lower lip and chin going numb, jittery when low and headache and angry when high) and to let the teacher know when she felt them.  To help her become aware, we asked her how she felt everytime she tested her blood sugars to help her recognize what her body was telling her.  Baylee was at a sleepover she went low without knowing it because she was playing so hard with her friends...she dropped to 39. I believe everyones levels are different to the point of shock or seizure.  In the three years since she was dx, she has never gone into shock or had a seizure. 

I agree with Elizabeth, you have to get a 504 plan.  It is a binding legal document the school systems have to accomodate you daughters needs.  We have a 504 plan in place for Baylee which ensures that she has to test her blood sugar before every test (because she cannot focus if her b/s are too high or too low) and if she is out of her range, she can take the test at a different time.  If she feels low, a classmate walks with her to the clinic so incase something does happen.    If she is high, she gets water and does some exercise. 

We also have family that insists that T1 and T2 are the same....they only want her to eat sugar free food.  People cannot understand what it is like to live with juvenile diabetes!!!  We have to think about everything they eat...there is no down day...24/7.  As you get more information and share it with friends, family, teachers!! 

I am actually new here also because I we are entering in a new phase with diabetes...teenage years and I am looking for advice.  Take a deep breath, you are no in this alone!!!

Stacey

11

I am sorry.  I know the risks involved with putting emails on public forums, but I was careless this time.  I just wasn't as familiar with this forum and its capabilities.  Thank you very much for pointing this out and for the suggestion.  Luckily, the email was mistyped anyway.  That was my old disconnected email.  Best of luck everyone!

12

I know how scary the frist year is, especially when diagnosed so little.  I have 4 boys, 3 are Type 1, they were diagnosed very young, at 8 months, 2 years old, and 5 years old.  Please, don't let the numbers get to you.  It will always be a constant battle, especially at this young age and while they are growing.  It is like trying to hit a moving target.  

The low your daughter had at school is indeed scary!  But talk to her teacher, explain to her the gravity of the situation.  Your daughter could have easily passed out at that level.  The first month of school is scary for every d parent, and it seems whatever can go wrong usually does.  But things settle and all will be well.  Hopefully a better care plan will be put into place and you won't have to worry so much. 

The communities recommended to you are a wealth of information.  Scores of families that are in your same position are out there!  You just need to find them.  I have met some of my best friends though blogging.  Please goto my blog and see the huge line of blogs I follow.  The link is on my profile page.  90% of my blog links are families with children under 10 with type 1 diabetes.  It is so nice not to feel alone in all of this!   

We have been dealing with this for 12 years so far, and I can tell you that all will be well!  You can do this!  ((HUGS)) to you, and please send me a message if you want to talk or yell or anything. ;)

13

Just a thought of reassurance although I know every diabetic is different but when I was still in my honeymoon phase of the diabetes I was as low as 30 and 32 and never passed out , had a seizure or any of that scary stuff. But then again I am all over the place also even after being diabetic for almost 6 years now. I  have passed out at 120 for who knows what reason or even at 178 because my blood sugar came crashing down so fast even after eating it kept coming down that it was a shock to my system I guess and I started going into passing out. Not to put any bad thoughts into your head but I did say that every diabetic is different. Thank god when I was still in school and having the 30 and 32 blood sugars my teacher was also a nurse so she knew what to do immediately.

14

Thank you all for sharing your stories and words of encouragement! I really appreciate it alot. Its tough going through this, but know there are others to talk to that know what you are going through really helps!!

Just to clarify, I live in Canada so we don't have a 504 plan here. I know it may look weird when I post BG numbers. Regardless of where I live we all go through the same thing in our daily lives.

15

I found this document from the Canadian Diabetes Assoc. that might interest you. Apparently only New Brunswick has specific legislation

protecting diabetic kids in schools. The other provinces have a patchwork of measures. Perhpas you should contact the Canadian Diabetes Association for help.

 

http://www.diabetes.ca/documents/get-involved/ON_Kids_in_School_backgrounder.pdf

16

Thank you!

17

@emabear It is going to be O.K. And your daughter is going to O.K. You are now (whether you like it or not) a Type 1 diabetes advocate. This means you will have to explain, and fight for things that your daughter needs. I've been Type 1 for 21 years, and as stinky as it is at times, I would not change a thing. It has made me who I am: strong, smart, and resilient.

I highly suggest you reach out to your local JDRF chapter and find a parent for you to talk to, and another Type 1 for your daughter to talk to. While it will be valuable to find kids her age, it will also be great to find teens or adults, so your daughter knows that life goes on.

Knowledge is power, so learn all that you can about Type 1, because you will need to question and sometimes teach every doctor your daughter comes in contact with.

Don't expect perfection, it's just not possible.

And please tell her, "Welcome to the club!" :D