new mom with T1 7 year old dx yesterday

[wvchinacat]

Hi all
I am a SAHM to 3 wonderful and wild daughters!! Willow is 7 (T1 as of yesterday), Ava is 4 and Haleigh is 3. We began seeing signs in March and I had her blood sugars tested. They did a fasting and all was normal so we just were on hold. The only other problems then were that she had not gained any weight in a year and she does not eat well- complains of stomach aches frequently after meals. I had her checked my a GI doc and he diagnosed with irritable bowel - I felt really dismissed. We also did allergy testing and ENT (whihc she has chronic sinusitis and was put on a nasal steroid) Over the past 2 weeks I have notices her peeing much more frequently and drinking like she could not get enough. We went out to dinner on Sunday and she almost passed out and the next morning I did a fasting BS at home (my DH also has T1) and her BS was 288. I immediatly called her ped and got her in and she tested her urine which was spilling sugars in the 2000 range. Her A1c was 14%. We began insulin yesterday afternoon. We were fortunate not to have to hospitalize her and are closely monitoring her food/carbs and her insulin. Right now on 1-6 units of Humalog with meals and 4 units of Lantus at night.

As a wife to a T1 I really thought I'd be able to handle this better - but I am feeling devestated and really sad for her. She keeps asking if she will have this forever and that just breaks my heart. I know my shock will get better as we get better under control - but I just feel so alone in al this. My DH is great but even he is nervous about giving too much insulin to make her low or not giving enough. Did I cause this by letting her take the nasal steroid? I have heard that they can raise the blood sugar. Then i also wonder since I ahve been reading a lot today and last night about the link to celiac - should I mention this to her nutritionist next week? This is all very overwhelming and upsetting. She has been a trooper and is so tough. The endocrinology clinic we see was very helpful and really great with her. But her actual doc is a PNP (nurse practioner) I wonder if I should see an actual endocrinologist or is the PNP as qualified? - the doctor that was there retired a few months ago . . .

Again . . .it's all just really overwhelming . . .

Thanks for listening
Vicki

[Caydens_Mommy]

Just wanted to tell you that I'm sorry to hear about your daughter.. Things will get easier.. Like you my dh is also diabetic.. We experienced some of the same emotions at dx's...

Let me just say this, you did not cause her to get D by doing anything.. The body turned on itself.. Try to not blame yourself or allow your dh to blame himself because it only makes things worse..

I hope you post and post often.. There are many knowledgeable and friendly people here.. I'm sure you will soon consider a lot of them family like I do.. Good luck and keep yout head up..

[Shad's stepmom]

Welcome to the boards. I'm new here so I will let some of the others answer the questions as I truly have no clue about most of them. I just wanted to say...feeling overwhelmed seems to go hand in hand with being a parent of a newly diagnosed or in my case,..new to me, .. child. Hang in there..these folks are awesome at helping folks through rough times. This forum is chocked full of informative folk. Take a deep breath...exhale slowly...read some of the threads and you will begin to see...you are not alone :). That knowledge has helped me more than anything...hope it helps you too.

[Thoover]

Welcome to the boards. I am so sorry to hear about your daughters diagnosis. Things will get better. hang in there, and you have found CWD which is a great support group..

[buggle]

Welcome and so sorry you have to be here. Good for you for staying on top of this and catching it before she went into DKA. It sounds like she may have had this for a while. We think my 8-yr-old had high sugars for a long time before he was diagnosed. He had a very high A1c as well.

Having a child diagnosed with type 1 really is devastating for parents. I cried every day for the first few weeks. That's why it's so helpful to have a place like this forum where other people understand what you're going through.

Are you guys seeing a pediatric endo? It's a good idea to see someone who specializes in diabetes in children.

It sounds like you're on top of it and you'll learn and keep getting better at this. And like everyone says, it does get easier. It really, truly does.

hugs,
rella

[Treysmom]

Hi Vickie, I just wanted to welcome you. :cwds:

[PAULEEN]

hi Vicki, WELCOME! Sorry to hear about your daughter - glad you found CWD so quickly. The people here are amazing! The resources you have here are wonderful. Ask lots of questions and someone here will know the answer...sometimes you don't even have to ask the question because someone else does it for you.:D Looking forward to getting to know you.

[jcanolson]

Sorry you have had to join us! Yes, it is over-whelming right now, so take a deep breath and focus on what needs to be done now. Give yourself a break as you all adjust.
As for the celiac, my dd was just dx'd with celiac about a month ago, yes, I would bring it up to your nutritionist, endo, ped, basically anyone until they do the testing. Some endos order a celiac panel at the initial dx'd of T1D, so check to see if it was already done. Hopefully that is not the problem, but I would definitely rule it out.
You were chosen for this child. You can do this! We're here when you need us!

[tiffanie1717]

Welcome! So sorry you had to join us! If you're like me, you'll be on here constantly learning so much every day! It's a GREAT place for support and information.

It's such a hard time emotionally. It WILL get better. I'm on about 10 weeks since my DD's dx. It's much better than it was!

[wvchinacat]

Thanks so much for the warm welcome and support. I really have had my ups and downs. I just did her midnight testing and it was 304 - which is much better than some of her other readings that said HI. My DH is just trying to read my emotions and I deal with his instability too. He is in pretty good control most of the time, he runs, and exercises daily - but he still has lows and sometimes they can be scary! So I am sort of waiting on eggshells for her to crash in some similar way. I have told a few of my close friends but most of them really have no clue otehr than they have see my DH giving a shot b4 dinner or something. I am still in a sort of denial . . .like I am going to wake up and her bs will be fine and we wont have to do this anymore. Rationally I know that it will get better . . . but emotionally right now it just sucks! SO thanks . . .

I do have few questions
I talked to our endo nurse today but forgot to ask . . . they want her on a strict 45 carb diet per meal/15 carb at snacks and check bs before meals but give insulin after meals with adjustments for high bs. That is so hard to stick to and still make her full.
Today her #s were 141 at breakfast so we did 1 unit of humalog, then at 11:00 she was starving - but it was just snack time so I checked her bs and it was HI so I just made 11 lunch time and gave her 5 units. Then checked her BS again at 12:30 (maybe I am checking too much??) it was 489 and by 2:00 she was starving again but I was too afraid to let her eat since her bs was so high. so i checked her at 2:30 and it was donw to 198 so I let her have a 15 carb snack - I never realized that she ate so much . . .until i have had to curb her diet! - this part is almost harder than giving the shots by dinner it had come back up to 269 so she got 2 units. and at bedtime bs was 345 and she gets 4 units of Lantus. She just had her midnight check and it is 304. I feel like 45 carbs are not enough for her to be satisfied. Is it the food I amchoosing . . . any others of you having to stick to way less carb count than will fill up your child?

Thanks
Vicki

[wvchinacat]

Are you guys seeing a pediatric endo? It's a good idea to see someone who specializes in diabetes in children.




We are actually seeing a Nurse Practitioner who specializes in Ped. Endo. The local Ped Endo recently retired. I was feeling a bit anxious about that . . .

vicki

[mollysmom]

I'm so sorry about your daughter's dx:( I know how overwhelming this is. CWD is a great website. You will get a lot of great support here.:cwds:

take care

[happy:)]

i wish you the best of luck!!!! you will learn alot here and there is always some one to talk to if you need any help. My mom is addicted to this site:)

[frizzyrazzy]

Hi and welcome. I'm sorry you have to be here but you've just found a thousand new best friends. :)

I haven't read all the answers but usually kids need to see a good pediatric endo...but 99% of the time the visit with the endo is spent with the CDE anyway, so if you're comfortable in your NP and she is well versed in pediactric diabetes then go for it.

As for the hunger - totally normal at first. Her little body was literally starving and now she's trying to make up for it by eating you out of house and home. High blood sugars make the kids ravenously hungry. :) It's pretty normal at first to have a set amount of carbs. It makes trying to figure out dosing eaiser but as you're finding, it's hard to restrict. I'd give the NP a call and see if she has a suggestion. Also, any blood sugar check before 2 hours is up is going to come back high. The only time to check that soon is if you suspect she's low. Otherwise, wait at least 2 hours for a recheck. you can't check too much, but it's checking at the right times that is important. :)

Hope that helps and don't be afraid to ask any questions! We've all been in your shoes.

[CButler]

Welcome to the forum. I'm sorry it is so overwhelming right now.

When my daughter was first diagnosed, it helped me alot to have the "pink panther book" on diabetes. If you don't have it, you should get it.
http://www.amazon.com/s/ref=nb_ss_b?url=search-alias%3Dstripbooks&field-keywords=pink+panther+book+diabetes&x=0&y=0

[skimom]

If your little one is too hungry, give the clinic a call and tell them you need her carbs upped for meals. Her appetite will settle once she has been on insulin for a while - she is just catching up. My kids lost 25 lb and 13 lb respectively before diagnosis so they were ravenous! I could not prepare food fast enough for my son who gained back the 25 lbs in one month. Once he got back to where he needed to be weight wise, the appetite became normal (well normal for a teenage boy).
As far as food - try to use fibre as your frend - the higher the fibre, the longer they feel full and you can subtract fibre grams from carb grams to get carb count.I find a good bowl of chili or paella with brown rices and beans etc can fill them up with lower carbs .

[TracieandJim]

Welcome Vicki. Im sorry you have to join us. You have come to the right place tho for answers and support. Come on over to the 'parents' room. Post as often as you like and search for answers or just simply ask. :) You will find a wealth of information and learn quickly just how many people really do care and understand.

Tracie

[K2mom]

Hi all,

My 7 year old daughter was dx with T1 on 07/07/08. She was admitted to the hospital right away. Finally after several tests, procedures and learning steps for a child with T1 D, our daughter went home on 07/13/08.

This is all new to my family and I. While browsing on the web for tips on carb counting and came accross this forum.

Once I read a few posts, I signed up. Any tips and suggestions are welcome.

Txs, K2mom

[hawkeyegirl]

Hi all,

My 7 year old daughter was dx with T1 on 07/07/08. She was admitted to the hospital right away. Finally after several tests, procedures and learning steps for a child with T1 D, our daughter went home on 07/13/08.

This is all new to my family and I. While browsing on the web for tips on carb counting and came accross this forum.

Once I read a few posts, I signed up. Any tips and suggestions are welcome.

Txs, K2mom

Welcome to both K2mom and wvChinacat!

My first suggestion or tip would be to read as much as you can about this disease - both on this forum, and in books. If you go to the Book Club forum on here, you will see 4 or 5 books that people consistently recommend for those who are newly diagnosed. I own all of them, and consult them ALL the time.

My second bit of advice is to not let yourself get overwhelmed or frustrated if you don't "get" it all right away. There is SO much to learn, and when it comes down to it, caring for a child with diabetes is as much an art as anything else. If you read something on here, ASK QUESTIONS. People here love to help, and there's no such thing as a stupid question. I asked every question that ran through my head when my son was first diagnosed, and not one person ever made me feel stupid or like I was a nuisance.

My third bit of advice is to make your doctors earn their keep. wvchinacat, you posted that you don't think your child is getting enough carbs to keep her satisfied, and also that she has been running pretty high. Bother your medical team about both of those things until they've been worked out to your satisfaction! There are options out there where you daughter can have more carbs per meal, or where she can really have unlimited carbs per meal. You should work with your doctor/nurse until you find the regimen that fits into your life. There's no reason, with the current insulins and technology, that your kids can't eat very similarly to the way they did before diagnosis. Not exactly, mind you, but very, very close.

I'm very glad you both found us, but sorry that you had to. Welcome to the family that no one wants to have to join. :cwds:

[TracieandJim]

As far as carb counting goes... just for a frame of reference. My DS, 2 yo, gets 30-35 carbs per main meals and 15 carbs for snacks. Ive seen 8 yo on this forum with slightly 40-45 carbs. So.. if your CDEs and dieticians havnt set you up with a base yet I would feel this out and go with what shes used to eating first, pre-D, and then balance it from there.

[lifewithdiabetes]

Hi Everyone:

Type 1 diabetic for 20 years. Luckily no complications. I am 43. My sister Debbie was diagnosed at age 2 and passed away from complications at 33. I am so encouraged by this forum! Support is the key!! Please spread the word about awareness!! Also check this out:

Hi Everyone:

I am really excited for my kids and their project that benefits the DRI at The University of Miami.

The kids came up with a wonderful idea of a crazy video contest in conjunction with "The Kids Party for a Cure" event on Sunday, November 23, 2008 at The Downtown Miami Hilton. Anyway... Each crazy video will be judged by a kids committee in November and the top ten winners will get a prize. Although adults are not excluded, the kids are using the power of the internet and You Tube (websites below) to spread awareness to other kids about Diabetes.

In fact, just by spreading the word, the kids will help this project take on a life of its own. Also, if any of your kids have a project or are looking for a project to do and want to team up with my kids, this may be of interest. The kids would also like to cross-promote some of the other projects out there.

So.. If you have a kid(s) or know a kid who likes posting videos, pass this on and simply make a donation of any amount ($1, $5, $25 or any amount) on the kids party for a cure donation page. Your generous donation allows you to enter a video for consideration. Please encourage your kids to be creative. Vids also need to be less than 3 mins and age appropriate. You can email your video to kidspartyforacure@yahoo.com

Please be sure to include with your video: your name, email, and donation amount. That way the kids can match up the donation with the video.

By the way.. if you want to just make a donation and cannot figure out how to make a video like me... I still cannot program my VCR!!... You can donate on the donation page.

I am sooooo proud of my girls!!! The kids have made a sponsorship committment for the event. The money raised will help them reach their overall goal.

For more info:

http://www.firstgiving.com/kidspartyforacurevideos

http://www.youtube.com/user/kidspartyforacure


THANKS FOR YOUR SUPPORT!

Jon

[XMumofType1aged8X]

Hi,

So sorry to hear of your daughter, it is normal to worry & blame yourself as i still do after 2 yrs. I still find it diffucult to come to terms with now after all this time but my son Jack has been fantastic about it! He was 6 when dx & only got upset when he was dx at the hospital, he has been great about it ever since & has made me smile & laugh through this diffucult time. I think kids can surprise you at the most unusual times & somehow keep you going.

When he was dx i blamed myself & over time i now realise that it wasn't anything we did but just happened. Jack thinks he is SPECIAL because of the Diabetes which sometimes brings a tear to our eyes.

I am new to this sight from only this week & its taken 2 yrs to be able to talk to people about it so for you to be on here already is going to help you & your family in so many different ways (advice-kind words-FRIENDS-& more than anything lovely people that are in the same situation as yourselves).

Take care & i hope you keep posting on here.

Kay X

[CandaceH13]

I am new to this board as well. My husband is a diabetic as well as my eight year old daughter. You have come to the right place. I had heard so many great things about it here. You have the beginnings of a great support network. Please let me know if I can lend a virtual ear or shoulder. Hang in there.

We thought about it much like Nick Jonas of the Jonas Brothers... he said "I had an emotional breakdown since I really had no idea what diabetes was all about. I wondered, 'why me?' Then I asked myself, 'why not me?' and realized that I might be able to help other kids with diabetes." It helps my daughter know that even really cute teen musicians have type 1 too!

Stay strong.

[Gemma'sMum]

Hi Vicki,
I'm new to the board too. Have a 13 yrs old daughter with type 1 and type 2 myself. Your post brought back so many memories of the first few days for me. All the emotions you describe were there, but I particularly remember Gemma's hunger and my inability to satisfy that without raising her numbers even higher. It was a real battle and as a Mum our instinct is to feed our kids when they are hungary. Glad to say that this does indeed pass, as others have said. Once they become stable, the insatiable hunger receeds.
You are doing great and it will get better, for all of you, tho that might seem far away at the moment.
G

[JPolito830]

Hello Vicki and welcome to the forum...I am new here as well and hope to chat with ya soon!

[JacksonsMom]

I wonder if it's not harder on you after your child's diagnosis if you already have a close family member with Type 1. My father has had type 1 for 30 years and I took the news a whole lot harder than my husband who hasn't had to live with it his whole life. I think I had more fear than he did.

Anyways, as days go by and turn into weeks and into months you will feel more comfortable and confident in your ability to care for child and it will become your new norm.

I haven't read the other posts but I'm sure they say the same thing. Just remember that no question is stupid. Join on in the discussions. It helps!