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#1 of 267 Old 04-07-2006, 12:30 AM - Thread Starter
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This is a tribe for mamas with type 1 (a.k.a. juvenile) diabetes to discuss the issues surrounding T1 and pregnancy, birth and mothering, particularly within the AP/NFL paradigm.

As suggested by Colleen, this first post is a list of resources so that we can compile a list of information about ways to increase the chances of having a healthy, low-intervention T1 pregnancy and birth, issues with breastfeeding that have to do with T1, and issues to do with mothering that are affected by T1.

(Note: the way this is set up right now means that I will edit this post to add more resources. If we want to do it another way that doesn’t require one person being the only one who can do that, that’s totally fine with me, so if you would prefer that and have a suggestion, please bring it up. )

Resources

1. Pre-pregnancy/T1 in general

Insulin Pumps

Pump Comparison

Books on Pumping/Improving Glycemic Control

John Walsh. Pumping Insulin, 4th ed.

2. T1 and Pregnancy

http://www.childrenwithdiabetes.com/..._pregnancy.htm
Colleen's note: The Children With Diabetes website has a pregancy Q and A page. I submitted a question to "Ask the Diabetes Team" recently. It's an easy way to get a second opinion...

Research on additional risks and ways to lower risks

Lauenborg et. al. Audit on Stillbirths in Women With Pregestational Type 1 Diabetes, 2003, full text
Maria’s note: This is a multicentre chart review that suggests that the elevated risk of stillbirth *may* be linked to poor glycemic control.

Jansen et. al. Outcomes in Type 1 Diabetic Pregnancies: A nationwide, population-based study, 2004, full text
Maria’s note: Large prospective study, but done during years before pumps were common.

Bernasko J. Contemporary management of type 1 diabetes mellitus in pregnancy, 2004, abstract only
Maria’s note: I have the full text if anyone has questions.

Research on changing insulin needs during pregnancy

<looking for info>

3. T1 and Birth

Enkin et. al. A Guide to Effective Care in Pregnancy and Childbirth, 2000, full text
Maria’s note: This is an *amazing* resource for anyone looking for evidence-based reviews of anything to do with pregnancy/birth. (It’s sort of like Henci Goer’s book, but more objective, and in my experience, tends to go over better with physicians.) There are some sections on diabetes. The book came out of the Cochrane Reviews and the authors made the full text available for free as a service to pregnant women. You may need to register to access the pdfs.

Wearing a pump vs. IV drip during labour

"During labor, insulin could be administered through intravenous drip of regular insulin or CSII."

Bernasko, J. Contemporary Management of Type 1 Diabetes in Pregnancy (CME Review Article). Obstetrical and Gynecological Review Survey, 2004: 59(9).

Birth Stories

A T1 diabetic homebirth (2nd baby, Britain, 2000)

Another T1 homebirth (3rd baby, Vermont, 1999, also 4th baby at home rather than birth center as planned due to fast labour)

my story - failed induction @ 40 weeks (1st baby, Canada, 2006)

<Please PM me if you're willing to provide a link to your story!>

4. T1 and Breastfeeding

Breastfeeding to treat neonatal hypoglycemia

La Leche League article 1997

A bfing-friendly protocol for the treatment of neonatal hypos (pdf, June 2006)

5. T1 and Mothering

<looking for info>

professor & maman de DS1 (6) & DS2 (1)

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#2 of 267 Old 04-07-2006, 12:32 AM - Thread Starter
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I’m Maria. I’m 30 years old and pregnant with my first babe due at the end of June/beginning of July. I am a Ph.D. student about halfway through my degree, have been married for almost 2 years, and I live in Canada.

I’ve been T1 for 23 years now (I remember life before home blood test meters! ) and have been pumping for almost 2 with my Cozmo pump.

I love my pump. I was reluctant to try it, but I cannot imagine going back to MDI now. It has made my life so much more flexible and my A1c’s went from high 7’s and low 8’s (not terrible, but certainly not great) to consistently sub 6.

All of my pregnancy A1c’s have been 5.6-5.8. Aside from a respiratory infection and way too many medical appointments, the pregnancy has been pretty uneventful.

I am planning a hospital NCB. I have a midwife (found here on MDC!) and a peri, as well as the usual team of endos. I’m really sad that homebirth is not an option for me, but I feel lucky to have a great team who are all on board with my preferences and also to have a hospital where most of the things that I want (e.g. no continuous EFM, no mom-baby separation, treatment of hypos via bfing, etc.) are standard procedure.

Some of the questions I have for the experienced mamas have to do with things like cosleeping safely (I sleep really hard when my sugars are anything but perfect and I’ve woken up more than once with my pump tubing wrapped around me and/or DH), breastfeeding, and how to balance my immediate needs (e.g. in the case of a hypo) with the equally immediate needs of a babe.

I’m really looking forward to getting to know you all.

professor & maman de DS1 (6) & DS2 (1)

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#3 of 267 Old 04-07-2006, 01:12 AM
 
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Hi, I'm Rachel. I'm 23 years old and have three sons (ages 4.5, 3 and 8mo). I just passed the 18th anniversary of my diagnosis and have been pumping for um... 7 years I think (with a brief period in there where I'd killed my pump and had to wait to get a new one). Right now I have a MiniMed Paradigm 512.

I've had quite a ride when it comes to pregnancy and childbirth. With my first I was young and stupid. I agreed to be induced at 38 weeks (because I HAD to be right? the doctor must know best...) and ended up with a very unnecessary c/s. My second was a VBAC that I had to fight to get. After 20 weeks I fired two practices of OBs and had two midwives turn me away. I ended up at the hospital (not knowing I was in labor) and my son was born less than an hour later. My third I was planning an UC (with the support of my OB) but had to give that up in the end because my son was swelling (later found out that was from Congenital Hypothyroidism) and had another c/s. I'm not upset about that c/s because I know it was needed. I learned from that and next time will get my homebirth.

I've been having a ton of thyroid problems since my youngest was born and I'm in terrible control of my bloodsugars. Not only is that not healthy, but it makes me grumpy with my kids. I need to get my butt kicked into taking care of myself.

I'm half asleep right now and can't see well, so I'll have to come back later with more details about me and my life with diabetes.

Betty *(.)(.)* mama to: DS1 (12) DS2 (11) DS3 (8)
(12/26/06) (5/11/09) (10/7/09)x2

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#4 of 267 Old 04-07-2006, 10:19 AM
 
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Hi there,

I'm Tricia in BC, Canada. I'm 29, I have a 9 month old dd, and I was diagnosed as diabetic during my 3rd trimester. It stuck. We're still trying to figure out exactly what I am (autoimmune-wise), but at the moment I am on an insulin pump. And I intend to stay that way.

April 18th is the 1st anniversary of my diagnosis - I am planning on celebrating by eating cheesecake. After all, never pass up a good excuse to eat cheesecake!

That said, I am pretty careful about what I eat, though I am currently battling night-time sugars that are higher than I'd like. I'm in my 5th month on the pump, so I'm still learning, though things are improving.

I've had quite a ride in the last year, learning about baby and diabetes at the same time. We cosleep and breastfeed. And yes, at times dd has to fuss while I treat a low - it is much better to have a mommy who is not passed out on the floor! My biggest concern was about night time, but I am actually the opposite of you, Maria: when I have BGs that are out of whack, I wake up again and again. This doesn't always help my dd, who is a light sleeper as it is. I am a tad grumpy this morning, can you tell?

Since I became diabetic during pregnancy, I was in panic mode for most of the last bit. Luckily, I wasn't induced, since babies come early and quickly in our family. In fact, if I'd listened to the hospital and stayed home a bit longer, we'd have had an unscheduled homebirth! One thing that I hadn't researched was the use of formula to bring up low BGs in newborns, and the use of formula to supplement when my dd was having serious problems eating at the start. Wish I'd known about milk donors then. However, she did learn how to bf just fine, though I still feel a bit guilty about the little bits of formula . I had wonderful bf-ing support, but some of the nurses at the hospital were pretty pro-formula.

Likely the worst part of the pregnancy was directly afterwards, when I still had some pancreas functioning...the endo thought the diabetes would go away and left me off insulin for 2 weeks until I got nice and sick...and clamoured to come in!

I also recently discovered I am somewhat hypothyroid. Yum.

Ok, I'm not usually this grumpy...but I think dd is teething again, so we had a bit of a bad night!

Looking forward to meeting all of you.

Tricia

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#5 of 267 Old 04-07-2006, 11:36 AM
 
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Oh my gosh I'm so happy that there are a bunch of us here! (well not happy about the circumstances obviously but you know what I mean)

I'm erica - 28 yrs old and pg with #2 (edd end of Aug). I was just dx'd T1 in October out of the clear blue sky. I had the GTT with #1 and passed with flying colors. Dd was 9lbs 1oz but I don't think I was diabetic at the time (although my mw suspects otherwise which is a whole other story).

We were ttc all last summer with no luck at all - dd was conceived very quickly - so I started to wonder what was up. Then towards the end of summer I started having those classic diabetes symptoms and got my diagnosis. I never even imagined I'd have T1, with the whole ttc thing, I thought I had PCOS or something. My endo didn't want us to continue ttc but I figured it hadn't happened in 6 months, it wasn't going to happen right now anyway. Well it did - about 6 wks after diagnosis. I guess my body just needed some stable blood sugar and I'm glad it waited because my a1c was 11.6! It was already at 7.3 when I conceived and I've gotten it down to 5.4 with the pump.

Like Tricia and Mommybear said - this pregnancy (even though my last ended in intervention hell) has been quite a ride. I feel like I'm fighting an uphill battle to get the birth I want and NEED. It took quite awhile to process my last birth which was a very difficult induction due to PIH. I was planning a homebirth until this all blew up in my face.

I'm with a mw group now but the back-up OB, while the most bfing friendly Ob I've ever met - is stuck in the dark ages when it comes to diabetes. He insists on doing an IV drip during labor and even made some comment about when I get insulin resistant he'd take me off the pump and put me on 2 shots/day. HELLO?! What did you just say? He obviously is clueless if he thinks a premix would give me better control.

So where I'm at now (gosh if you're still reading, can you tell I've been dying to let this out to people that get it?) is that I have to find out my peri's stance on the IV. My endo wrote my mw group a letter which had no impact. If my peri is okay and my mw's OB is still not - I think I will need to switch to an Ob that supports that. I don't want to but that is huge issue for me. I feel confident that I can advocate for myself in the other arenas but that one is tough.

Other than that I've just been talking to this baby and telling him/her to come just a little early so that I can go into labor on my own and stay home until I'm practically crowning to avoid potential disaster!
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#6 of 267 Old 04-11-2006, 04:19 PM
 
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Hi, I'm Colleen. I'm 33 wks w/ 2nd pg. I'm happy to meet all of you and looking forward to helping each other have a healthy pregnancy and the birth of our choice.

I've been type 1 since I was 3, and pumping for about 5 1/2 years. So far my pg is uncomplicated. My bgs are not perfect, but my a1cs are great. No signs of any problems with the baby.

With my first pg, I really trusted my perinatology team and went along with most of their recommendations, including an early induction in spite of no complications. The induction was awful and resulted in a traumatic birth for my ds, a lot of regret for me, and a very long recovery period.

This time I'm doing all that I can to have a natural birth. You would think I was dangling my baby off a balcony from the responses I've gotten from just about everyone when I tell them I want to minimize interventions.

Homebirth and birth centers are not options for us. No one will take me. So we've been doing everything possible to make the best of a hospital birth. I'm trying to learn about what circumstances might lead my ob or neonatal folks to do unnecessary interventions so that we don't allow anything out of fear and ignorance.

We have a birth plan, are doing Bradley, and I've hired a doula to be another advocate for our choices while I'm in labor. Last week we met with one of the neonatologist at the hospital to discuss our choices with her re. care of baby. We'd heard that virtually all babies of diabetic mothers got to the NICU, and we're going to avoid that unless our baby is truly sick (and I don't consider slightly low bg to be sick.)

So far, my ob has (reluctantly) agreed to most of my birth plan. We don't exactly see eye to eye, but at least there won't be surprises while I'm in labor (knock on wood.)

Keeping my bgs normal is easy about 90% of the time, then I hit a growth spurt or something and my insulin resistance increases all at once, and I spend a day or two constantly bumping up my boluses and basals.

Anyone interested in sharing birth plans?

Take care!
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#7 of 267 Old 04-11-2006, 04:46 PM
 
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The Children With Diabetes website has a pregancy Q and A page. I submitted a question to "Ask the Diabetes Team" recently. It's an easy way to get a second opinion...
http://www.childrenwithdiabetes.com/..._pregnancy.htm
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#8 of 267 Old 04-11-2006, 05:28 PM
 
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Colleen - Welcome...
I was officially a gestational diabetic, so I guess I was lucky - most interventions didn't happen to me. Except formula feeding for a baby with low BGs - grrrrrrrrrr. Maybe you can ask your doula to fend off some of the interventions for you?

EJ - I can't believe that they'd want to put you on 2 shots. Silly, silly, silly. If I'd been on the pump during labour it would have been so great. As it was, had to worry about throwing up (sorry, TMI) and how my BGs might react. Luckily, I didn't throw up, but that was one of my big concerns.

Hey, baby tip for diabetics - the Ergo baby carrier has a nice pouch that fits a test kit, glucose tabs, and a few other items. I was just thinking today how convenient it was that they designed that just for diabetics!

Oh, and Colleen - I sometimes test in the middle of the night. Where do you keep your testing stuff for middle of night tests if you cosleep? My dd is just getting to the age when she might get into that kind of thing, but I still want it really handy.

Tricia

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#9 of 267 Old 04-11-2006, 10:39 PM
 
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Quote:
Originally Posted by widemouthedfrog
Oh, and Colleen - I sometimes test in the middle of the night. Where do you keep your testing stuff for middle of night tests if you cosleep? My dd is just getting to the age when she might get into that kind of thing, but I still want it really handy.
Hi Tricia, I keep my kit on my bedside table, and my son's kit at the head of the bed next to his sippy cup. Ds also has type 1 Ds is free to open up the kit and "practice" doing little pokes, so it really doesn't hold a whole lot of interest for him. The only think that bugs me is when he wants to dump out the strips, and I just redirect him. He doesn't have the manual dexterity yet to open the strip vial. Keeping a quick glucose source next to the bed is more difficult. I keep meaning to put drawer latches on the bedside tables and haven't gotten around to it yet. Right now dh or I have to get out of bed to get something something to treat nighttime lows.

As for pump tubing, I worried about this a lot when he was tiny. Ds has always slept in the middle, so I try hard to keep my pump on the outside. We've never had a close call. We have had tangled tubing, though, usually from our morning cuddles!
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#10 of 267 Old 04-12-2006, 04:48 PM
 
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Hi Colleen,

Yep, I do the same with my pump - it is in the pocket that is the farthest away from dd.

Is your husband diabetic too?

My endocrinologist won't confirm whether I'm autoimmune T1 or whether my pancreas was just toasted by a number of factors, so I am getting tested for antibodies. They might still be around, who knows. If so, I'm thinking of putting dd in the trialnet study to check for developing T1. Anyone else done that?

Actually, in a way it would be more convenient to cosleep with your diabetic child, and safer too. Hadn't thought of that. You'd certainly be more aware of how the child was doing.

Tricia

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#11 of 267 Old 04-12-2006, 05:16 PM
 
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I co-slept with my mama because of diabetes. She liked to have me near in case something might happen (even though she had alarms set to wake every 2 hours through the night to test my sugar). LOL I didn't object, I liked being in her bed

Betty *(.)(.)* mama to: DS1 (12) DS2 (11) DS3 (8)
(12/26/06) (5/11/09) (10/7/09)x2

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#12 of 267 Old 04-14-2006, 02:45 AM
 
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MommyBear,
Love your post about cosleeping with your mama!

Tricia,
No, my dh is not diabetic, and no diabetes in his family. We had ds in the TRIGR study to look at effect of bm vs cows milk on developing type 1, and his diagnosis was picked up at his 12 mo blood work. His cord blood tested +ve for the "at risk" gene. One thing I have regretted is that we did all of his vaxs on schedule up until 12 mo when he didn't get the chicken pox. But who knows...I think the TrialNet study is a great idea, and I need to look into enrolling new baby.

An update on me, today I was "fired" by my OB. It was pretty much a mutual decision, but still upsetting (How many times does she need to say "fetal death" in one visit?) She could not deal with my birthplan, specifically my wishes to avoid induction, IV, and continuous monitoring. I keep reminding myself that this is a good thing, since I haven't been comfortable with her or her partner since my first visit. And I do have several leads on OBs with more experience with natural birth. Wish me luck.
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#13 of 267 Old 04-14-2006, 10:38 AM
 
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Colleen,

Sorry to hear about your OB's attitude - I actually had a very nice one who just told me to take it easy towards the end. However, I knew that baby would come early and quickly (or really hoped, anyway), so I wasn't too sticky about induction...I just nodded and smiled. As it was, dd came 2.5 weeks early, 1.5 weeks before they would have induced me. And they didn't have time to do anything towards the end, intervention-wise, except feed her formula afterwards argggg. Ah well, hopefully it is all for the best. My docs at the clinic where I visited (these were in addition to the OB - standard maternity docs) were the ones who kept on freaking out. They didn't really say "fetal death," they just kept on panicking at the slightest thing and sending me for emergency tests. It was really good for my stress level. For example, they decided one week that the baby wasn't growing, and I went in for an emergency ultrasound, after spending all night thinking babe was in distress...the ultrasound tech discovered that the doc had been looking at the wrong due date on the chart, and babe was growing just fine!

Yes, I deeply regret my choice to vax dd up to 6 months...I am thinking of delaying some of the future ones. At the time I wasn't aware of the possible connection between T1 and vaxing, or I would have waited. I am becoming crunchier by the minute, what can I say? Now she's visiting a naturopath - hopefully we'll be able to reconsitute some of that immune system....

I wanted to go into the TRIGR study, but as I said, dd was supplemented at birth, so I don't think I was eligible. Trialnet starts at 1 year, so if the antibody tests check out, I will start her on her 1st birthday!

We did cord blood too - is it possible to check that after the fact? Probably not.

I am really sorry to hear about your ds. That must be very hard to deal with. I know that if dd develops diabetes, I will be crushed...that said, at least I will know how to deal with it to a degree. And I'll be able to advocate for her right away.

Odd question - the docs told me that newborns have different blood sugar levels than adults. If this is true, when do kids fall into the range of normal Bgs? Ie: can I test my dd with my test kit? Not that she'd appreciate it, but I'd like to keep an eye on things.

Tricia

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#14 of 267 Old 04-14-2006, 01:59 PM - Thread Starter
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Tricia, I cannot imagine what it must have been like to deal with a diagnosis along with a new babe. Yikes!

Erica, how are things going with the whole pump/IV insulin thing?

Rachel, that’s so sweet about your mom co-sleeping with you. How are you handling the thyroid issues? That’s got to be tough on top of T1 and raising three small people.

Colleen, I’m sorry to hear about your OB. I hope you find someone more in line with your preferences. Thanks for the CWD reference, I will add it to the list! And yes, I’d be happy to share birth plans. Mine is currently under revision but I will post it when I have the next draft done.

I’m glad to hear about T1 mamas successfully co-sleeping. I think we may have some sort of safety barrier set up at first (like a snuggle-nest type thing) and then move to regular co-sleeping once s/he is older. We’ll see how it goes.

We are participating in TRIGR, so I didn’t really look into any of the other TrialNet studies, but I think they sound like a good idea. Besides any potential clinical benefits to participating, unfair as it is, it is definitely the case that people who participate in studies get better health care in general. (My PhD research is in a fringe area of medicine, so I see this a lot.)

We do plan to vax. According to my risk-benefit analysis, for us, vaxing is less risky than not vaxing, especially considering where we live and our travel habits. That risk-benefit analysis will obviously be different for different families.

FWIW, from a scientific perspective, the current consensus is that autoimmune T1 is caused by a complex interaction of environmental factors/triggers. I think that vaxes are definitely a factor to look at, since it is, after all, an autoimmune disease and there have been some potential links shown. I can totally understand why someone might choose not to vax. However, in considering the etiology of the disease, I doubt that vaxes are an independent factor, especially considering that the disease has been around a lot longer than any of the vaxes have.

By the way, I realized after I posted my “This pregnancy has been pretty uneventful,” statement, that I forgot about when, around 14 weeks, I crashed overnight and woke up at 5 a.m. to paramedics standing around my bed and an IV in my hand. My DH woke up at 4 a.m. because, he explained, “I heard your breathing change.” I love that man. I was very low (1.4 mmol/L, or 25 mg/dL), nonresponsive, and we were out of glucagon at the time, so he decided to call EMS. They came, gave me IV dextrose (so much better than glucagon!) and I finally woke up, completely confused about what was happening.

Everything is going pretty well with the pregnancy these days. I’m at 29 weeks and am hitting some big insulin resistance, so I’m constantly adjusting my basals, insulin to carb ratio and correction factors. At this point, I’m just doing it all by feel. I tried to do it the usual formal testing way (e.g. fasting tests for basals, etc.) but by the time I had enough test results to see a pattern, the pattern had changed!

I really love almost everyone on my health care team. My MW is amazing. I actually found her here on MDC after having been rejected by a number of midwifery practices in my city. I am so, so grateful to have the chance to work with her and her group. She is the one who hooked me up with my peri, who I also really like, and recommended the woman from whom we took our prenatal class and with whom we will also be working for hypnobirthing.

I went over my birth plan this week with the peri and he was very open to all my preferences. I feel very respected when I talk to him, which, as I understand from other women – T1 or not – is not always the case, so I feel lucky. We talked about induction and I explained my analysis. He responded essentially, “Well, you’re smart and you understand the risks. If you feel OK about it and everything looks good on the BPPs, I don’t have a problem going to 41 weeks, although if you haven’t gone into labour by then I’d like to talk about induction.”

The only issue I’ve had at all is with one of the two endos responsible for my care. I *love* one of the endos; the other I just tolerate. Sadly, my last three appointments, she’s been the one on clinic that day. She’s fine, and she will go along with what I want, but she is somewhat narrow-minded. I was chatting with her about wearing the pump vs. having an IV drip and she said, a little confused as to why I might have a problem with IV insulin/dextrose (which is, admittedly, much faster than subcu and food): “Well, you’re going to have an IV anyway.” It took a little while for her to understand why I might not have an automatic IV/heplock in place. She also has *horrible* math skills, so whenever we’re talking about pump adjustments, she makes wildly contradictory statements, which is a little alarming for me.

I hope everyone is doing well and enjoying the weekend!

Quote:
Originally Posted by widemouthedfrog
Odd question - the docs told me that newborns have different blood sugar levels than adults. If this is true, when do kids fall into the range of normal Bgs? Ie: can I test my dd with my test kit? Not that she'd appreciate it, but I'd like to keep an eye on things.
Colleen can probably answer this better than I can, but yes, newborns and children have a wider range of normal blood sugar. For example, depending on the individual protocol, newborns are considered to be low if they drop below 2.2-2.8 (40-50), whereas for adults, the limit is more like 3.3-3.8 (60-70).

professor & maman de DS1 (6) & DS2 (1)

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#15 of 267 Old 04-14-2006, 04:04 PM
 
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Tricia,
I don't know at what age babies bgs are similar to ours. I would think pretty early. I wasn't worried about lows with my ds prior to his diagnosis, just highs, so I didn't think much about that. We tested him periodically in his first year. Any time it seemed like something just wasn't right. I don't know if we had an intuition about his subsequent diagnosis, or were just overly cautious. I can see testing for lows, too, though. Maybe if your dd is fussy and hasn't eaten in a while? My nephew gets lows that I think explain a lot of his behavior.

I don't think that there would be any value in checking your dd's stored cord blood. Save that for if you really need it. You could have her checked now.

Combo of Tests Predicts Type 1 Diabetes
Eighty percent accuracy found, could enhance future clinical trials on preventing the disease. http://www.healthfinder.gov/news/new...p?docID=528791
These tests are the basis for one of the TrialNet studies. If you did that, TrialNet would pay for the tests and arrange everything for you.


Maria,
I'm not totally anti-vax at this point, but after reading The Vaccine Guide by Randall Neustaedter, I got a better understanding of the potential negative effects of vaccinating according to the AAP schedule. One of the things I came away with is that multiple vaxs at such an early age are a stress on the immune system, and since type 1 is an auto-immune disease, it seems possible that there is a connection. Not assuming cause-effect, just that it may be another factor.

Gotta say I'm envious of your situations with your care providers. I'd love to have a midwife, or even an OB who can respect my ability to make informed decisions.

Catching up with the sudden, dramatic increases in insulin resistance is tough, isn't it? I always start by bumping up my basals by 0.025 or 0.05, but it takes a lot more than that to make a difference this late in my pg, and I end up with multiple high 100s and low 200s for a couple of days.

Take care all!
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Maria,
I'm not totally anti-vax at this point, but after reading The Vaccine Guide by Randall Neustaedter, I got a better understanding of the potential negative effects of vaccinating according to the AAP schedule. One of the things I came away with is that multiple vaxs at such an early age are a stress on the immune system, and since type 1 is an auto-immune disease, it seems possible that there is a connection. Not assuming cause-effect, just that it may be another factor.
Yeah, I hear you, and like I said above, I agree that it makes sense to look at vaxes as a factor in anything to do with the immune system. As for the schedule, I think what is frustrating for people who are active, informed participants in their children's health care is that, really, the vax schedule has a lot more to do with convenience than with immunology. The reasoning is, "Let's get everyone vaxed when they're coming in for appointments anyway and let's try to do it in as few appointments as possible." And while I do see the point of that from a policy perspective, I still get : over the potential hazards of that approach.

Quote:
Originally Posted by colleen95
Gotta say I'm envious of your situations with your care providers. I'd love to have a midwife, or even an OB who can respect my ability to make informed decisions.
Yes, I'm very lucky. I think things tend to better in Canada to start with (i.e. most hospitals are bfing-friendly, keep baby with mom, etc.) and then I also have the added advantages of being in a major centre, giving me (a) a lot more options to start with and (b) access to teaching hospitals, which tend to be more evidence-based and open to patient preferences because of the research focus on evidence-based medicine (EBM) and patient-centred medicine (PCM), two of the biggest trends sweeping the medical research world! It also helps that I am a researcher myself and work with physicians regularly, which means that I can more-or-less speak their language.

Quote:
Originally Posted by colleen95
Catching up with the sudden, dramatic increases in insulin resistance is tough, isn't it? I always start by bumping up my basals by 0.025 or 0.05, but it takes a lot more than that to make a difference this late in my pg, and I end up with multiple high 100s and low 200s for a couple of days.
Yeah, I'm starting to get pretty aggressive in my adjustments, which is not at all how I did things pre-pregnancy. It's a little odd to go from a TDD of about 40 units to so much higher! I'm averaging about 90-100 units these days, and I am told that I should expect to hit at least 150 if not 200.

professor & maman de DS1 (6) & DS2 (1)

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Hi Maria and Colleen,

Thanks for the info about BGs in kids - I'm more curious about highs, obviously. Maybe I'll test her sometimes. Can't hurt (well, only a bit).

Yes, it was a lousy first 6 months with diabetes and baby. Kind of a crash course in "this is your new life".

Yeah, sadly I can't get her into the study until my endo confirms I am T1. Since I was diagnosed as gestational at first, he didn't test for antibodies, and assumed that I was T2. I'm not the "typical" T2 body type, but it does run in the family. However, the nurses all assume that I am actually LADA - slow-acting, later form of T1. It can act like T2 for a while until you become insulin-dependent. I stuck with insulin after pregnancy to avoid pills, and also because I wanted to go on the pump. I still have a wee bit of pancreas functioning left, but overall, I'm functionally T1 - we're just not sure if it's autoimmune or not. So I'm getting tested for GAD65 antibodies so that we can confirm. They may not still be around, but it's the best I can do.

Maria, where in Canada are you? I'm in Vancouver. Are you in Toronto?

Good to hear that you have a decent relationship with one endo. I really disliked my endo until recently - he treated me like I didn't have a brain, said "well, most people don't want to count carbs" when I lobbied to go on a pump. Arg! Perhaps I don't want to be most people! Anyway, during my last appt we finally had a good discussion about antibody testing, etc, and I think that he finally realized that a.) I have a brain b.) I am responsible and I'm working hard at this. I also have a background in science and research (not medical, but I have a scientific bent) - I think that he was kind of treating me as "youngish pregnant mom with no brain" rather than "intelligent youngish mom with background in science who happens to have diabetes." Not that it should matter.

Oh well, this all sounds rather snitty, and I don't mean to be. Rant, vent, rant.

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#18 of 267 Old 04-15-2006, 02:38 AM - Thread Starter
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Tricia, yes, I'm in TO. Sorry to hear about the endo - that attitude always bothers me. One of my proudest moments ever was with such a physician. I was OB-shopping for one who would work with my MW and who I liked. The first interview, the OB asked me who authorized adjustments to my basals, insulin:carb ratios, who authorized boluses :, etc. I was pretty surprised by the question and told him that I did, of course. He replied in this appalled sort of tone, "You can't just be playing doctor with yourself!"

Proudest moment ever (I don't normally think on my feet this quickly) ... I responded innocently, "Oh. (pause) OK then, could you recommend an endocrinologist who would be willing to come live with me 24-7 and make all my decisions for me? Mine seems to be willing to treat it like the self-managed disease that it is, and is very happy with my control and A1c's, but she's obviously being too slack."

Anyway, Colleen, I just finished another draft of my birth plan, so here you go. It's very long (that's apparently OK here, though I've heard from people in the states that it should be kept as short as possible.) Names (mine, physicians, hospital) have been changed or removed.

Birth plan for: <my name>
Partner: <DH’s name>
Support Person: <MW and backup MW>
Physicians: Dr. John Smith (perinatologist), Dr. Anne Thomson and Dr. Catherine Jones (endocrinologists)

This birth plan was reviewed with Dr. John Smith on <date> and Dr. Anne Thomson or Dr. Catherine Jones on <date>. All sections of the birth plan pertaining to post-birth baby care were reviewed with Dr. Elizabeth Johnson (Maria’s note: head of neonatology) via phone on March 29, 2006.

Signatures:


________________________________________
Dr. John Smith


________________________________________
Dr. Anne Thomson or Dr. Catherine Jones


------------------------------------------------------------------------------------------------------------
Dear Staff at My Favourite Hospital,

My husband and I are very pleased to be planning the birth of our child at My Favourite Hospital and are looking forward to working with you. The following is an outline of our preferences for the birth of our child.

I realize that many of our preferences are standard procedures at My Favourite Hospital, for which we feel very fortunate.

I also understand that emergency situations may arise and that in that case, these preferences may not be possible. If that should happen and if there is time, I would appreciate having a brief discussion about my available options.

The support people present at this birth will be my husband, DH LastName, and either MW1 LastName or her backup, MW2 LastName. MW1 and MW2 are midwives with My Favourite Midwives. They have clinical privileges at Hospital X and Hospital Y, but not at My Favourite, so they will be attending my birth in a support role. Dr. Smith has worked with MW1 in the past and agreed to participate in this somewhat unusual arrangement for concurrent care.

Sincerely,



<my name>

<page break>
Summary (a.k.a my top 5 most important issues)

IV: I do not want an IV or heplock. I have had numerous IVs in my lifetime and have always found the site to be very painful for 2-8 weeks afterwards. I would prefer not to have to deal with that while also recovering from childbirth. If an emergency IV is necessary, of course I am willing to have one inserted.

My blood sugar: I have been type 1 diabetic for 23 years, am on an insulin pump and have excellent control. My HbA1c readings have been 5.6% or lower throughout the pregnancy. While at the hospital, my husband and I would like to continue to manage my blood sugar by testing with my meter, using my insulin pump and having me eat and drink as necessary. If my blood sugars become unstable, I would be willing to have an IV insulin and dextrose drip. I understand that my nurses will need to monitor my blood sugar for my chart, and I am perfectly happy to provide blood samples as requested.

Labour: I would like to labour at my own pace, move around, change positions, have the option to use the shower, a birthing stool, birthing bar or birthing ball, and to push without coaching. I would especially appreciate no one counting during pushes.

Birth: Unless the baby is in distress and needs to exit urgently, I would rather tear than have an episiotomy. I would like to hold the baby skin to skin immediately, breastfeed as soon as possible, and deliver the placenta without artificial oxytocin (pitocin). I am willing to have prophylactic pitocin to prevent PPH after delivery of the placenta.

Baby’s blood sugar: If the baby shows signs of neonatal hypoglycemia, I would like to try breastfeeding first to treat it. If s/he still needs more glucose, I would like to use colostrum that I will provide from a supply pumped ahead of time. If that does not work, I would like to use glucose solution or TRIGR formula administered via cup, dropper, syringe or SNS.

Important Note

We are participating in TRIGR.

<page break>
Detailed Version

Environment

I would like to make the environment as comfortable and relaxing as possible for me during labour and birth.

I would like to wear my own clothes, which have pockets for my insulin pump.

If possible, I would like to have the option of:
- dimming the lights
- playing music
- keeping unnecessary machines off

Staff

I understand that My Favourite Hospital is a teaching hospital and I am happy to have student nurses, medical students, and residents involved in my care. I would like students and residents to be identified as such to me and to my husband.

I would like the staff to know that I respond very well to supportive encouragement. (I would love the staff to tell me how fabulously I am doing as often as possible!)

Induction/Augmentation

Provided I am doing well and the baby is doing well as assessed via regular biophysical profiles, I would like to avoid an induction until at least 41 weeks gestation.

I would prefer to avoid any chemical augmentation during labour.

Labour

I would like to labour at my own pace as much as possible. This could include:
- eating and drinking when I wish to
- walking, moving around and showering
- bringing and using a birthing stool
- using a birthing ball or birthing bar
- pushing instinctively rather than being coached

I would like to avoid:
- continuous EFM (intermittent is fine)
- IV or heparin lock (emergency IV is fine)

I would like to avoid vaginal checks as much as possible.

Please don't offer me pain medication. I'll request it if I need it.

Blood Sugar Management

I would like me and my husband (who is trained in the use of my insulin pump and test meter) to manage my blood sugar so long as it remains sufficiently stable. This could include:
- eating and drinking as needed
- continuing to wear my insulin pump
- testing my blood sugar frequently (we will bring our own meter)

We are happy to also provide blood samples for the hospital's meter for my chart at whatever interval is deemed necessary.

During early labour, I would like to avoid an IV insulin drip unless my blood sugar readings are unstable, as judged by my husband and me, relative to my normal patterns.

During active labour, if I have two consecutive readings above 7.0 mmol/L, I would like to discuss the option of an IV insulin drip.

At any stage, if I am am hypoglycemic and unable to keep fluids or glucose tablets down due to vomiting, I would like to have an IV dextrose drip.

Vaginal Delivery

I would like:
- to risk a tear rather than have an episiotomy (If the baby is in distress and needs a quick exit then an episiotomy is fine.)
- me or my husband to catch (deliver) the baby if possible
- the person who is catching (delivering) the baby to announce the sex of the baby
- the baby to be placed on my abdomen/chest immediately
- my husband to cut the cord

C-section

Unless absolutely necessary, I would like to avoid a Cesarean delivery. If my primary care provider is not Dr. Smith, she or he determines that a Cesarean delivery is indicated, Dr. Smith can be reached, and there is time to do so, I would like Dr. Smith to be consulted for a second opinion.

If a Cesarean delivery is indicated, I would like to be fully informed and to participate in the decision-making process.

If a C-section is deemed necessary, I would prefer:
- my husband present at all times during the operation
- to see as much as possible of the procedure, especially the baby coming out
- spinal anesthesia rather than general or epidural

After the birth

I would prefer to have the baby with me as much as possible. If s/he needs medical attention, I would like my husband to be with him/her at all times.

I would like to:
- hold the baby skin to skin immediately after birth to help regulate his/her temperature
- breastfeed the baby as soon as possible
- have all heel prick tests performed while the baby is with me
- deliver the placenta without pitocin (prophylactic pitocin to prevent PPH is fine)
- take the placenta home with me

I understand that normal procedure for babies of diabetic mothers is to test the baby’s blood sugars regularly for at least the first 24 hours after his or her birth. If I am feeling well and the baby has had two consecutive normal blood sugar readings, I would like to discuss the option of going home. My husband and I would check the baby’s blood sugar ourselves during that time and return to the hospital immediately if s/he has two consecutive readings below 2.8 mmol/L.

In the case of neonatal hypoglycemia

If my baby becomes hypoglycemic, my preferences for treating it are, in order:
1.colostrum via breastfeeding
2.pumped colostrum (provided by me ahead of time) via dropper, syringe, cup, or supplemental nursing system
3.glucose solution via dropper, syringe, cup or supplemental nursing system
4.TRIGR formula via dropper, syringe, cup or supplemental nursing system

professor & maman de DS1 (6) & DS2 (1)

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#19 of 267 Old 04-15-2006, 11:36 AM
 
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Hi Maria,
What a great birth plan! I wish I'd been half as organized.

Yes, up until last visit my endo was similar to the OB you mentioned - we had a lively debate about how much I could change things on my pump. And then last time, light bulbs came on. It was my first post-pump A1C (5.9), so I was still learning and having higher bgs sometimes, but I thought it was pretty good for such a steep learning curve. And many fewer lows than pre-pump, too. Suddenly he was congratulating me on decent control without a lot of lows, instead of flipping out about me changing basals by 0.05....

We'll see what happens next time!

Oh, a few things I forgot about last time:

Snuggle Nests - they're an in-bed cosleeper. My dd didn't like hers much, but if you're worried about lows or rolling, it might be a good option. They have a little top part that is kind of like a box, and then the bottom part is flat.

Nursing and lows - Once you're in a pattern, I think nursing generally lowers your bgs, not at specific times. However, it's good to monitor this at the beginning, because I did find that all of the night time nursing would drive me lower - be careful with basals. At the time I was on MDI, and it just wasn't working for me, so that was part of the problem too.

Wow, great to hear that your dh caught your low of 1.4...I hear that in early pregnancy lows can be particularly difficult (I wasn't diabetic then, or not diagnosed anyway, so that wasn't an issue for me).

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Rachel, that’s so sweet about your mom co-sleeping with you. How are you handling the thyroid issues? That’s got to be tough on top of T1 and raising three small people.
My thyroid is still nine kinds of screwed up. I'm jumping between hypo and hpyer with no noticible pattern. It's like one day I'm doing fine and the WHACK! I'm hyper and my BS won't stay up for anything. There have been times that I've disconnected my pump and (once) drank a two quarts of orange juice and my BS still stayed in the 60s. Then a few days later, when I can get in for bloodwork, it'll come back as "massively hypo." It's a mess. The first time they tested me and found me to be hyper, they put me on PTU. I was uneasy about taking it since it does pass through to breastmilk and DS3 was already hypo so I just didn't take it. Now I'm glad because I think it would have really screwed things up. They think I was hyper during my pregnancy and that caused DS's congenital hypothyroidism. He is 9 months old now and they're saying we can take him off Synthroid at 12 months because it seems his thyroid has started to work on its own.

LOL can you gell I'm up to my ear lobes in thyroid crap?

Betty *(.)(.)* mama to: DS1 (12) DS2 (11) DS3 (8)
(12/26/06) (5/11/09) (10/7/09)x2

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#21 of 267 Old 04-16-2006, 09:42 AM
 
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Hi Rachael,

Have you gotten checked out for autoimmune "stuff" going on with your thyroid? Apparently jumping hypo to hyper and back can indicate that your thyroid's being stimulated, then becoming more laid back again.

I ask because my thyroid is hypo now too...even though I'm skinny skinny...and someone mentioned this to me. But it's not too hypo, and I am hoping it stays sane for a while.

Those BGs sound AWFUL.

I understand about those meds...doc tried to insist I'd do well on diabetes meds after pregnancy, and even though some are considered ok, I wasn't all that keen.

Take care,
Tricia

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#22 of 267 Old 04-17-2006, 12:29 PM
 
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Boy was I behind on posts!

Things here are good - I had my Level II on friday and everything looked perfect. Baby is 14 oz and in the 83rd percentile for growth - I should not have asked about percentile because now I'm fixated on that! But I really think I just have big babies. Dd was 9lbs 1oz and I hadn't developed diabetes yet. I have to schedule a fetal echo four weeks from now to 'rule out the 30% of heart defects that can't be detected via the Level II' Do/did you guys have to get a fetal echo? I'm not sure I feel it's necessary but I also don't think it's a battle I choose to fight. I'd rather piss off my healthcare team with other issues

I didn't get a chance to talk to the peri about the iv/insulin drip thing. He didn't bother to come in after my LII because it was so normal But I think he does the echo so I will approach him about it then rather than scheduling a consult and paying for that. I've been trying not to think about it so much because I get so upset when I do. I'm trying to have faith in my mw's but I'm not so sure I do and I hope that doesn't put me in a bad frame of mind when I am laboring. But I have 20 more weeks to figure that all out - thankfully.

Colleen - good luck finding a new OB. I hope you find someone more supportive

Tricia and Rachel - That stinks about all the thyroid issues you girls are dealing with. I hope it all settles down soon.

Maria - thanks for posting the birth plan! I'm going to copy That was a snappy comeback you had for that OB... I wish I had YOU to speak for me with this assinine OB who wants to IV me. Can you come to the States with your newborn and be my doula?

Re: the cosleeping/pump thing - we cosleep with my 2.5 yr old and she spins like a top in her sleep. I clip my pump to my pj pants and tuck the tubing into my underwear. Sometimes if I just let my pump roam free in bed it will wind up around her leg or something - but I've never had a site pulled out from that or anything. An infant doesn't move as much so i'd imagine it would be less of a worry.

Re the vax thing... I for one have racked my brain to figure out how, at my age I developed T1. I guess just part of the process of accepting diagnosis. My dr. asked if I had had any major viruses or anything - nope. The only thing I could come up with was that I had a rubella shot right after dd was born. So I really wonder if that sparked the autoimmune reaction... But I guess I'll never know... Re vaxes for dd - we selectively and delayed vax. I was more freaked out about reactions to the preservatives etc... than I was about diabetes from them. But now with #2 I'm not so sure...

I have a question though: If I wasn't dx'd until after dd was 2 yrs old, is she at the same risk for inheriting diabetes (and I know T1 has a much much lower risk of being passed on) than this baby? Or is this baby more at risk since I had T1 when he/she was conceived?
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#23 of 267 Old 04-17-2006, 01:53 PM - Thread Starter
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Hi Erica,

Yes, I had a fetal echo. As interventions go, I'm pretty comfortable with U/S. I would never have one for fun, but when there is a genuine medical indication, I think it's reasonable to use a very low-risk, non-intrusive screening/intervention. Plus the fact that fetal echos can catch issues that may require special treatment during pregnancy or shortly after birth was a factor in the decision for me.

I hear you about percentiles. Sproglet was smack dab on the 50th at 24 weeks and then scored in the 64th at 29 weeks. I *know* the difference is within the error range, and yet it still freaks me out. I think I would do fine with a big babe (I am built exactly like my mom who had my 10 lb+ sister with no problems) but I just don't want to have to have the macrosomia discussion on top of all this other stuff.

Quote:
Originally Posted by hannahmom
I didn't get a chance to talk to the peri about the iv/insulin drip thing. He didn't bother to come in after my LII because it was so normal But I think he does the echo so I will approach him about it then rather than scheduling a consult and paying for that. I've been trying not to think about it so much because I get so upset when I do. I'm trying to have faith in my mw's but I'm not so sure I do and I hope that doesn't put me in a bad frame of mind when I am laboring. But I have 20 more weeks to figure that all out - thankfully.
Good luck with that. If it helps, I think the thing that made the discussion go smoothly for me even with people who weren't very accepting of the no IV idea (e.g. the endo of whom I am not fond) was me presenting it as an if-then proposition. The fact that I have written in when I *would* like an IV seemed to calm them down and made them realize that I'm not going to be unreasonable about this and refuse an IV if it is clearly the way to go (e.g. unstable sugars, bad hypos combined with vomiting); I just want to try it my preferred way first and see how it goes.

Quote:
Originally Posted by hannahmom
Maria - thanks for posting the birth plan! I'm going to copy That was a snappy comeback you had for that OB... I wish I had YOU to speak for me with this assinine OB who wants to IV me. Can you come to the States with your newborn and be my doula?
Glad the birth plan helped. It's half copied to start with, so copy away! And like I said, I don't usually think on my feet that quickly, which is why I was so proud. And I would totally come and help if I could. I'm sure you will be able to negotiate this, though.

Quote:
Originally Posted by hannahmom
Re the vax thing... I for one have racked my brain to figure out how, at my age I developed T1. I guess just part of the process of accepting diagnosis. My dr. asked if I had had any major viruses or anything - nope. The only thing I could come up with was that I had a rubella shot right after dd was born. So I really wonder if that sparked the autoimmune reaction... But I guess I'll never know...
Yeah, that's possible. Pregnancy can be a potential stressor, too. It usually takes a while for all the beta cells to get killed off, so it's always tough to know what triggered it. Like I said above, the general cause is more than likely a complex interaction of factors, which means that it's (a) tricky to figure out and (b) likely different for different people.

Quote:
Originally Posted by hannahmom
I have a question though: If I wasn't dx'd until after dd was 2 yrs old, is she at the same risk for inheriting diabetes (and I know T1 has a much much lower risk of being passed on) than this baby? Or is this baby more at risk since I had T1 when he/she was conceived?
As I understand it, if you have the genetic predisposition, you would have the same chances of passing along that genetic wackiness whether you had developed the disease or not. If you don't have the genetic predisposition, then no worries either way.

professor & maman de DS1 (6) & DS2 (1)

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#24 of 267 Old 04-17-2006, 01:54 PM
 
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Hi EJ,

Ok, I don't THINK that being official T1 has anything to do with your child being at greater risk, though I may be wrong. Often am, actually. If it's a combo of genetic and environmental factors, I'd think that the genes would be around when you conceived #1 as well! You can have your children tested for antibodies through the Trialnet study, since you are T1.

I have heard that the age of the mother can have something to do with T1 risk, but I cannot remember where I heard this. And of course, it is more strongly inherited through the father's line. My dad's sister had it. I do recall something about kids being exposed to T1 antibodies while you are pregnant/bfing, but I don't recall this being a bad thing. I guess I should keep my references!

Yes, I am still (after 1 year) working on accepting the diagnosis. I've mostly got a handle on it, generally by getting some control of the diabetes itself. My most difficult part has been realizing that I am no longer self-sufficient. I depend on the medical system. That has been hard.

For me, I think that I actually developed diabetes due to a virus. I was plenty sick last Easter with a migraine/flu type of thing - it was so bad that since my husband was away, I moved in with the in-laws for a few days. 2 weeks later, diagnosis. Plus I was under major stress. All triggers.

Anyway, hope this helps! Maybe Maria can shed more light on the medical aspects of things (or at least provide better references than I can!)

Ok, back to all the work I need to do during nap time.

Oh, looks like Maria and I cross-posted....

Tricia

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#25 of 267 Old 04-17-2006, 02:43 PM
 
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I hear ya about being okay with u/s - and I don't have a huge problem with the fetal echo - I just hate to consent to some test 'just because' ya know? Now if they said there are markers for xyz or there is something we want to take a better look at, I would feel the test is more justified. I'm confident everything is okay and I will feel even better getting a clear result - but I want a definitive motive for the test. Not that I'll get it... other than diabetes = greater risk (even though I was told the chances are so minimal with how newly dx'd and how good my a1c's have been). Ah whatever - like I said, not a battle I'm choosing to fight when there are more important things to worry about.

That's interesting that pregnancy can be a stressor in the progression of this too... I wish they could carbon date the dead betas to figure out time of death - so you could look back and piece together what may have been factors I don't think in my case there is a genetic predisposition. I know T2 runs in the family, my uncle and great grandfather... But I definitely had the T1 antibodies.

Tricia - I couldn't agree more about accepting that you depend on the medical system and that totally sucking. Fortunately through dh I have great coverage on supplies but figuring out HOW to get all that covered was a nightmare. And omg the bills from diagnosis alone! We have to figure out some way to get my CDE appts covered - they were $200/visit and insurance denied coverage :
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#26 of 267 Old 04-19-2006, 03:03 AM - Thread Starter
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Originally Posted by widemouthedfrog
I have heard that the age of the mother can have something to do with T1 risk, but I cannot remember where I heard this. And of course, it is more strongly inherited through the father's line. My dad's sister had it. I do recall something about kids being exposed to T1 antibodies while you are pregnant/bfing, but I don't recall this being a bad thing. I guess I should keep my references!
I don't know anything about the T1 antibodies during pg/bfing.

Re: genetics, the basic stats are that if the father has T1, the chances are about 4-6%. If the mother has T1 and is younger than 25, it's about 2%, if she's over 25, it's less than 1%. I have no idea why age matters. Maybe it's a confounded relationship? I haven't looked heavily into the genetics because I figure there isn't much I can do about it, you know?

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Yes, I am still (after 1 year) working on accepting the diagnosis. I've mostly got a handle on it, generally by getting some control of the diabetes itself. My most difficult part has been realizing that I am no longer self-sufficient. I depend on the medical system. That has been hard.
Yeah, that is hard. I still have trouble with that from time to time. When I decided to start the pump, I went through a little grief period. Although I knew it wasn't exactly the case, it felt like I was giving up on a cure and accepting that this is a long term thing. You'd think that after 21 years I would have figured that out already, but no.

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#27 of 267 Old 04-19-2006, 09:55 AM
 
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Although I knew it wasn't exactly the case, it felt like I was giving up on a cure and accepting that this is a long term thing. You'd think that after 21 years I would have figured that out already, but no.
It's funny you say that - because for some reason I'm decidedly pessimistic about a 'cure'. I don't ever really think about it... My mom gets all excited to tell me about the latest advances she hears about and I have a hard time not squashing her enthusiasm. Maybe it's just how I cope with the fact that this is a chronic illness and may not ever go away?

And I have a problem with calling it an illness - I kind of cringed typing that... We're not sick. More like a minor malfunction?
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#28 of 267 Old 04-19-2006, 10:33 AM
 
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It's funny you say that - because for some reason I'm decidedly pessimistic about a 'cure'. I don't ever really think about it... My mom gets all excited to tell me about the latest advances she hears about and I have a hard time not squashing her enthusiasm. Maybe it's just how I cope with the fact that this is a chronic illness and may not ever go away?

And I have a problem with calling it an illness - I kind of cringed typing that... We're not sick. More like a minor malfunction?
I feel the same way. I've told people that even if they do find a "cure" I don't know that I'll go for it. I don't want to be some test case and I'd want to make darn sure it was 100% before I'd even *think* about it. Diabetes isn't a big deal to me, its just life.

It also bugs the crap out of me when women find out they are gestational and totally freak out about it because they can't eat their precious Snickers (or whatever). And don't even get me started on the ones that *might* have to take insulin... because that is just the end of the world you know. I have a hard time not telling them "well, at least yours is likely to go away... mine is here forever and I deal just fine." I know that sounds so harsh of me, I'm really not a bitter person but for some reason, that just rubs me the wrong way.

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(12/26/06) (5/11/09) (10/7/09)x2

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#29 of 267 Old 04-19-2006, 07:08 PM
 
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Hi there,
Yes, it seems like a lot of the cures are worse than the disease itself, so far. And no, I don't like disease or chronic illness, either. Maybe "condition" works. Or my favourite personal phrases are "funky endocrine stuff" and "toasted pancreas". It seems obvious that I grew up in the 1980s, hmmm?

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It also bugs the crap out of me when women find out they are gestational and totally freak out about it
Yeah, I was one of those people, but somehow I knew it wasn't gestational. Maybe because it was a lot worse than the other gestational diabetics. I wasn't upset about insulin, but I was afraid. I'm sure most people are when they start. But a friend of mine whose grandma was T1 says, "I just wouldn't be able to give myself needles (or insert pump stuff, or whatever)." Well, if you can't, you're not going to be around a long time if you're diabetic. Luckily, I was never too squeamish about that.

The other end of things are the people who are excited about the cure - and I think that's part of their grieving, perhaps? Trying to fix it? Or the ones who say, "Oh, it's ok, you just need to eat well, it's not that hard." Like my mother-in-law, who (bless her) just really, really wants another grandchild. So she says, "Lots of diabetics get pregnant, it shouldn't be a big issue." Well, I was already leaning towards having 1 child anyway. And having a kid is a big responsibility, and having diabetes is a big responsibility. Not sure I want to get pregnant again any time soon, on top of all that! Diabetic pregnancy is a lot of work.

Ok, ranting is over.

Tricia

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#30 of 267 Old 04-22-2006, 04:09 PM - Thread Starter
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It's funny you say that - because for some reason I'm decidedly pessimistic about a 'cure'. I don't ever really think about it... My mom gets all excited to tell me about the latest advances she hears about and I have a hard time not squashing her enthusiasm. Maybe it's just how I cope with the fact that this is a chronic illness and may not ever go away?

And I have a problem with calling it an illness - I kind of cringed typing that... We're not sick. More like a minor malfunction?
Yeah, that makes sense. I don't think I ever consciously thought about the likelihood of a cure, but I really did go through a little grieving period when I decided to start the pump.

I don't have a problem calling it a chronic illness, although I do know what you mean. I certainly don't think of myself as ill.

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It also bugs the crap out of me when women find out they are gestational and totally freak out about it because they can't eat their precious Snickers (or whatever). And don't even get me started on the ones that *might* have to take insulin... because that is just the end of the world you know. I have a hard time not telling them "well, at least yours is likely to go away... mine is here forever and I deal just fine." I know that sounds so harsh of me, I'm really not a bitter person but for some reason, that just rubs me the wrong way.
I hear you. I try to just remember that GD can be completely new and scary for women, because (a) it's a new diagnosis, which is always tough, and (b) it happens during pregnancy, when many women are already hypersensitive about things that can go wrong, and it's scary to think that something is happening that could affect your baby. But yes, hearing/reading someone whinging about having to test a few times a day for a couple of months bothers me, too!

One thing that helped me deal with the whole, "Oh, I could never take needles," and "Oh, how awful for you," attitude was when I got into some areas in my research about how people who are not living with a chronic condition tend to assume that it's much, much worse than it really is.

There have been experiments done with people's assessments of paraplegia, for example, where people assigned numerical values to describe how good/bad living with paraplegia is through a somewhat complicated exercise. People who were not paraplegic assigned much lower values than people who were. So really, it's just a matter of perspective.

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