Any Moms to Type 1 Diabetic?

[Blue Hen]

I took 16yo DS to the ER last week where he was admitted for several days and diagnosed as a Type 1 diabetic. He's been home for a week and let me just say I am so glad he is home and not away all day at a PS. I'm still very much in shock over this diagnosis. I went searching the web for an active forum related to T1 and haven't found one. Yes, I found forums but they aren't active since posts from others are just sitting there unanswered.

 

If your child is T1 where do you go for support? Is there an active forum out there? We head back to the hospital tomorrow for another day of training with the endo team which I'm very thankful for. I'm waiting for the other shoe to drop too. DS is handling this all but mom is just a bit stressed out here.

[Twigs]

:grouphug: :grouphug: :grouphug:

[Isabella]

:grouphug: to you. I've only just become a 'second mother' to my dd's boyfriend, who lives with us, and is a Type 1diabetic. He's 24, though, but still needs some looking after! So I do the mum thing, and worry if he's eating at the right times, eating more if he's doing more physical stuff, etc.

 

I'm sure it'll be a big adjustment for you all, but sounds like you are facing up to it with inner courage! :grouphug:

[MomtoCandJ]

My niece and sister in law both have type one. Niece was diagnosed at age 3. Since then she has also developed celiacs and is lactos intolerant. She was born with her valves switched and a hole in her heart and has thyroid disease as well. Dn is in public school and has special services since she is also a little slow to catch on to concepts and all her health needs.

[JessieC]

Yes, I am. Try type1parents.org. Good luck--it is so overwhelming at first. It is a life-changing dx that eventually becomes a new normal.

[ccolopy]

My DS was diagnosed at 7, and it was the extra push that got us started homeschooling.

 

I'm not active there anymore, but the forums on childrenwithdiabetes.com were great when I needed them. Good luck! :grouphug:

[LNC]

My DS was diagnosed at 7, and it was the extra push that got us started homeschooling.

 

I'm not active there anymore, but the forums on childrenwithdiabetes.com were great when I needed them. Good luck! :grouphug:

 

I'm sorry! It is a lot to take in. My son was diagnosed at 4. Hopefully, your will adjust quickly to the shock and emotions of it all and become independent quickly. My biggest worry about my son is that he needs my reminders to stay on top of things. I want him 100% reliable and responsible before college. If you can start off with those habits, all the better.

 

Did the hospital give you the Pink Panther guidebook? The children with diabetes forum is like the wtm board for type 1 parents. Hth!

[tots2teens]

Yes, I am. Try type1parents.org. Good luck--it is so overwhelming at first. It is a life-changing dx that eventually becomes a new normal.

 

 

I totally agree, it becomes a new normal. My ds was diagnosed at 9. He is 15 now. He has an insulin pump and is almost totally independent. Although he was homeschooled for several years, he is in the local high school now. He has great friends who are aware of his diagnosis and keep an eye on him (remind him to check his blood sugar, know the signs of a low blood sugar, etc). One of my biggest fears was that he would be embarrassed and not want to check his blood sugar at school but that has not been an issue.

:grouphug: This is a difficult diagnosis but it does get easier with time. Feel free to PM me if you need advice or encouragement!

[Goldilocks]

My 12 yo has Type 1. He was diagnosed at 6. I learned a lot at the children with diabetes forums, but haven't been there in years, so I am not sure how active they are.

 

I felt like I had a newborn the first few weeks. Everything was different. Even leaving the house felt like a huge deal, trying to remember the extra stuff we needed to bring along. It gets much better.

[Kareni]

 

If your child is T1 where do you go for support? Is there an active forum out there?

 

Hello there, Blue Hen,

 

I'm sorry to hear that you and your son are having to deal with this new challenge. I emailed a friend whose daughter was diagnosed with Type 1 Diabetes a few years ago to ask for resources to suggest to you and this was her reply:

 

"The books I found the most helpful at diagnosis were;

 

Understanding Diabetes (the Pink Panther book as many families call it) H. Peter Chase (lots of families get this at diagnosis) There is a simple/short version and a bigger, more in depth version

 

The Everything parent’s Guide to Children with Juvenile diabetes – Moira McCarthy – she’s coming out with a book specifically on teens and has a blog called Despite Diabetes which is very well written.

 

Parenting a Child with Diabetes – Gloria Loring – a little dated but might be relevant.

 

Later on – usually too overwhelming at diagnosis but if she’s very sciency Think Like a Pancreas – like I said, very indepth and doesn’t cover new diagnosis and parenting, just a resource.

 

Pumping Insulin (again for later)

 

Behavioral Diabetes Institute is good for later on issues as well – coping etc.

 

JDRF has a lot of resources on their website.

 

Childrenwithdiabetes.org

 

Tudiabetes.com

 

I’ll keep mulling this over and get you more info. as I’m able.

 

Tell her that meeting/talking to and connecting with other parents is so extremely helpful. The JDRF in her area might know of a parent group she can get access too.

 

Tell her there are two (what I consider) indispensable tools. The first is cake gel (the kind you decorate with) it comes in small tubes and can be put by the kids bed, in her purse, in his diabetes bag etc. It’s the fastest acting glucose and if you buy the stuff specific to diabetes it’s about $5.00 a tube- too big and too much. You never have to use it but it’s perfect for reassurance and if you do it works FAST (I’ve used in once). Note: The cake gel is for emergency use – not for treating lows – just to use in case the kid can’t swallow.

 

The other tool that I find invaluable is a food scale that allows you to enter the food item and tells you the carb count of the food – expensive and hard to find (I think) but so worth it – I got mine at Bed Bath & Beyond – "

 

I'm also sending you a personal message with one more of her suggestions.

 

Wishing you and your son well.

 

Regards,

Kareni

[WTMCassandra]

My 16yo daughter was diagnosed when 12yo, almost 13 (considered a "late" T1 diagnosis). I turned to books, online forums, and an "in-person" support group locally. However, the last ends up focusing 95% about how to deal with the school systems, so a lot of it is not relevant to me, although it makes me VERY thankful we homeschool. I am unaware of ANY other T1 homeschoolers in our area, so it can get a little lonely, but I do think that home schooled T1s have it way easier.

 

We also made carb charts for common homemade meals that we eat, to make carb counting a little less overwhelming in the early days. That helped a lot. Food scales are helpful, and the Calorie King little book helps too. Now they also make carb-counting iPhone apps, and those can come in handy also.

 

It is very overwhelming at first, but you do adjust to the new normal. Our biggest long-term challenge is well-meaning older people, familiar with T2, who keep trying to push diet food on our T1. Sigh.

 

We were quite reluctant to move to a pump, but now we are glad we did. After you get over learning how to use it and how to change the infusion sets, it does simplify life. But your doc will probably want you guys to stay with injections for at least six months first.

[Blue Hen]

Yes, I am. Try type1parents.org. Good luck--it is so overwhelming at first. It is a life-changing dx that eventually becomes a new normal.

 

 

Thanks. I'll check it out.

[Blue Hen]

 

 

I totally agree, it becomes a new normal. My ds was diagnosed at 9. He is 15 now. He has an insulin pump and is almost totally independent. Although he was homeschooled for several years, he is in the local high school now. He has great friends who are aware of his diagnosis and keep an eye on him (remind him to check his blood sugar, know the signs of a low blood sugar, etc). One of my biggest fears was that he would be embarrassed and not want to check his blood sugar at school but that has not been an issue.

:grouphug: This is a difficult diagnosis but it does get easier with time. Feel free to PM me if you need advice or encouragement!

 

Thanks!

[Blue Hen]

My 16yo daughter was diagnosed when 12yo, almost 13 (considered a "late" T1 diagnosis). I turned to books, online forums, and an "in-person" support group locally. However, the last ends up focusing 95% about how to deal with the school systems, so a lot of it is not relevant to me, although it makes me VERY thankful we homeschool. I am unaware of ANY other T1 homeschoolers in our area, so it can get a little lonely, but I do think that home schooled T1s have it way easier.

 

We also made carb charts for common homemade meals that we eat, to make carb counting a little less overwhelming in the early days. That helped a lot. Food scales are helpful, and the Calorie King little book helps too. Now they also make carb-counting iPhone apps, and those can come in handy also.

 

It is very overwhelming at first, but you do adjust to the new normal. Our biggest long-term challenge is well-meaning older people, familiar with T2, who keep trying to push diet food on our T1. Sigh.

 

We were quite reluctant to move to a pump, but now we are glad we did. After you get over learning how to use it and how to change the infusion sets, it does simplify life. But your doc will probably want you guys to stay with injections for at least six months first.

 

 

When I saw the DS's weight loss in Sept T1 crossed my mind but I thought---he's too old to be hit with that. Guess not. Yes, hs'ing sure has helped to decrease my worries since I can see him, watch what he eats, see him testing his BG and see that he is gettting his shots.

 

I like the idea of making a carb chart. I picked up a small white board, 8x11" size, and he writes his food & carb count on that so he/we can see what the count is up to before he injects or eats. We already have 2 nice food scales so we were good there. The endo team at the hospital sent us home with the Pink Panther book and Calorie King. PPB really helped clarify stuff too.

 

I've already rec'd the comments from his coach & friends --- "I don't understand how he can have diabetes, he's so skinny." or the, "You should make him exercise more cause that's how my GM got hers under control." I grew up having several classmates with T1 so it's hard for me to understand how folks do not know about T1.

 

At our meeting on Monday with our Endo Team they suggested the pump for DS. He was not interested in even hearing about it. I'm giving him time and maybe in 3 or 6 months he'll be more interested in it.

 

Thanks!

[WTMCassandra]

At our meeting on Monday with our Endo Team they suggested the pump for DS. He was not interested in even hearing about it. I'm giving him time and maybe in 3 or 6 months he'll be more interested in it.

 

 

Wow, that is unusual. Most doctors in my state want the patient to stay on shots for at least six months to get the hang of it before attempting the complexity of a pump. I don't blame your son for not wanting to hear about it right now! Enough time for it later.

 

Be prepared, though, the pump is not cheap. Even with good insurance, we were out of pocket over $1K. But even as a cheapskate I can say that it has been worth it.

[unsinkable]

:grouphug:

 

No advice on diabetes but I know how horrible and lost we felt when we found DD is status epilepticus years ago.

 

Looking back, it was like a line was drawn in the sand: Life Before Epilepsy and Life After Epilepsy.

 

I hope you find the support and information you need.

 

:grouphug:

[Sara in AZ]

My 12 yo has Type 1. He was diagnosed at 6. I learned a lot at the children with diabetes forums, but haven't been there in years, so I am not sure how active they are.

 

I felt like I had a newborn the first few weeks. Everything was different. Even leaving the house felt like a huge deal, trying to remember the extra stuff we needed to bring along. It gets much better.

 

 

 

This is exactly how I felt when DD was diagnosed. And I had actually HAD a newborn at the time, so we really didn't go anywhere! Hang in there OP!!!! It's a huge learning curve, but life really does settle down to a new normal pretty quick. Ask at the hospital if they host a support group. Ours does on a fairly regular basis. I wish we new more families in real life that deal with diabetes, but we don't. Also ask at the hospital for info about diabetes summer camp. I've heard it's amazing!

[chickenpatty]

Just wanted to offer more :grouphug: :grouphug: . My 13yr old was diagnosed when she was 9. Those first several weeks were so hard - there was so much to learn & it was all so terrifying!

 

She didn't get a pump until about 2 years ago, and that was another huge thing to learn, but it has been WELL worth it!

 

In the beginning, I got a lot of help from childrenwithdiabetes.com. We were also in touch with our endo every single day for the first few weeks.

 

Now, my dd handles it all like a champ - it is second nature.

[canadianmomtofour]

This is exactly how I felt when DD was diagnosed. And I had actually HAD a newborn at the time, so we really didn't go anywhere! Hang in there OP!!!! It's a huge learning curve, but life really does settle down to a new normal pretty quick. Ask at the hospital if they host a support group. Ours does on a fairly regular basis. I wish we new more families in real life that deal with diabetes, but we don't. Also ask at the hospital for info about diabetes summer camp. I've heard it's amazing!

 

 

 

Me too. My oldest was diagnosed when he was 8 and I was 32 weeks pg with my youngest. It will get easier, OP, I promise! The Children With Diabetes forum was a lifesaver for me. I learned so much there.

[Lawana]

I have a Type 1 dd.

 

The most important things:

 

You will make mistakes. So will your ds. Let them go. Really. Life with Type 1 is a roller coaster.

 

You can only control 1 main variable(carbohydrate intake), and to some extent one other(exercise). Invisible to us, and completely uncontrolable, there are many things going on in the body that raise and lower blood sugar. Don't frustrate yourself by taking low and high blood glucose numbers personally. We actually make pretty lousy pancreases.

 

Your dh, if involved, may have a completely different approach to diabetes than you. Do not let it come between you.

 

Try your level best to not show an emotional reaction to any particular bg reading. Thank your son for checking and do what needs to be done with the information. Whatever you do, don't assume he "did" something to make his bg high.

 

Identify what *you* need. Is it a support group? Or is it information? There are sources for both, but you likely will do better if you separate the sources.

 

High blood sugar needs insulin, and low blood sugar needs carbs. When it comes right down to it, it's that simple. Of course the tricky part is how much.

 

Good luck! I couldn't think about anything else for about a month after dd was diagnosed. It took about a year before it became second nature. YDMV (your diabetes may vary)

[vettechmomof2]

Yep, my daughter was diagnosed at age 7, she is now 13.

Most of the good refernce books have been posted above as well as websites.

 

Another important thing to note is that no 2 Type 1's will react the same way.

You will hear everyones grandparents death story relating in their minds to diabetes and you will learn that your son and your family did nothing to cause this!

 

Hang in there.

[Blue Hen]

Thank you all for your posts. We are 6 weeks post-diagnosis here and sailing along rather smoothly. We're tittering on honeymoon here, hit a few low numbers but nothing scarry yet. The highs are far apart and really not that high (225s). DS is handling all this quite well and I only freak out a bit (never in front of DS) when another shoe falls.

 

This diagnosis also uncovered a heart valve problem which has me concerned. We've had a few meetings with cardiac docs, had lots of tests run and now we're waiting 6 months till the BG has been 'normal' for awhile and then re-evaluate.

 

Because of the how our primary doc handled my ds' initial test results, mainly his lack of any sense of urgency when he reported to us that DS had an A1C of 12.8 and was diabetic---this doc wanted us to wait close to a week before coming back in to see him! we switched docs. Yesterday I obtained ds' medical record from this doc and discovered that in May 2011---yes, 18 months ago----DS had ketones and proteins in his urine! That was never reported to me nor were any follow-up tests suggested. Oh, and DS has never been close to being on a low-carb diet so the ketones weren't there from that. The urine wasn't checked for sugar. I'm just livid that ds has possible been a T1 for a lot longer than what we knew, and worried about the possible internal damage this could have caused. Tomorrow we visit the new doc.

 

I also tagged this thread with T1 Diabetes so that if any future new T1 mom comes searching they can find all the wonderful information you shared with me.