Mamas with type 1 diabetes - Page 2

[widemouthedfrog]

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

[hannahmom]

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?

[~pi]

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.

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.

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.

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.

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.

[widemouthedfrog]

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

[hannahmom]

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 :

[~pi]

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?

Originally Posted by widemouthedfrog

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.

[hannahmom]

Originally Posted by ~pi

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?

[MommyBear]

Originally Posted by hannahmom

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.

[widemouthedfrog]

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?

Originally Posted by MommyBear

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

[~pi]

Originally Posted by hannahmom

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.

Originally Posted by MommyBear

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.

[MommyBear]

I learned something very important last night. Hospitals are not the friendliest place for an AP mama to be. I had to go in because my bloodsugars were crazy high (600) and they freaked out when I said I needed to keep DS3 with me so he could eat. Got some nasty comments from the day nurse today before I was discharged. So, in case you needed it, there is another reason to keep your sugars in check.

[Think of Winter]

excessive u/ss...x-post from pregnancy

Hi Mamas,
I am 35 wks, and my high risk team are doing nsts including u/ss for fluid twice a week. This is making me really nervous. I am not concerned about the nsts, but it seems like an excessive number of u/ss. I had this many nsts with my 1st pg, but far fewer fluid level tests. Having recently been "fired" by my OB, I am anxious about saying no. Does anyone know where I can find a standard of care type document for high-risk pregnancies that would support my wish for fewer fluid scans? I know I have the right to say no to anything I'm not comfortable with, but I'm not feeling up to the looks I'm going to get, and the lecture, and the possibility that this group, too, will tell me that if I want to manage my pregnancy instead of them to find someone else. Any advice?

[hannahmom]

Oh no! Mommybear that sucks Do you know why you were so high? Or did it come out of nowhere? I'm so dreading the hospital experience when I deliver this baby - I feel like I have to fight for everything.

colleen - my mw does the twice a week NSTs and once a week BPP (fluid scan) starting around then. I think it is the standard of care for diabetic pregnancies. Hang on - do you mean they are doing fluid scans twice a week too? Perhaps you could mention how it was done with your first preg and request that they only do them once a week -- or even every other week? I'm sure ~pi will come up with some documentation for you How do you like the new practice so far other than the nst/bpp thing? Good luck, I hope they are much more understanding than your first!

[widemouthedfrog]

Ack, Rachael, I hope that you are feeling better now. 600 would be lousy. I've probably been there pre-diagnosis, hoping not to go there again, though. Ick, ick, ick.

When I was pregnant I had NSTs once per week and the occasional ultrasound. However, I wasn't official T1 at the time, so I am not sure about the standard of care for T1.

My daughter performed stupendously on the NSTs, by the way - she was a big kicker! It was rather amusing. Except this one time, when she fell asleep 1/2 way through, and I had to stay there for ages.... I kept her last NST results for her baby book.

Oh, I just learned about a Yahoogroup called Positive Diabetic Pregnancies - you might want to check it out if you're not on it already. It might have the kind of info you're looking for.

Tricia

[MommyBear]

I felt pretty gross with the 600 but sadly, that is by far not the first time I've gone that high. There was even one time when they had to dilute my blood before they could get a reading on it. When I go high, I go really high.

I really think I should have just stayed home Sunday night. They didn't do anything for me that I couldn't have done at home and at home I wouldn't have got nasty comments about nursing my baby. Live and learn. It'll take a lot to get me back to the hospital in the future, in fact I don't think I'll walk in under my own power.

[widemouthedfrog]

Hi folks,

Rachel, I am so sorry to hear about your 600s....that is so lousy. I always find I can't eat too many carbs at night or I end up way high, but 600 would feel wretched. Sadly, I think it is true that we often know more than the docs about our treatment - but take care, watch that DKA....

Well, I'm still waiting for the endo to call me back, but it might be official - I may really, honestly be classified as T1. I don't know why I am so happy about this!

Since I was diagnosed during pregnancy, my endo always said that I was likely T2, and the nurses said I had 1.5 (LADA, slow-developing T1). I couldn't get him to confirm either way, though I was SURE it was 1.5, since I got really sick about 2 weeks before diagnosis. And I can't enrol Lauren in the Trialnet study without his confirmation.

So I finally talked him into an anti-GAD antibody test in March, and I just called (again ) to see if the results were in, and anti-GAD was 88%, or high. So I suspect that confirms things! Hope it does in his mind.

I don't know why I am celebrating this. I knew all along, I guess, and it was driving me nuts to never be classified as anything. And now that it's definitely autoimmune, I know where I'm at.

Ok, enough excitement for one day.

Tricia

[hannahmom]

I felt the same way when I had a definitive diagnosis... I guess part of it too is that there is a certain stigma attached to T2 because of some of the root factors that can lead to it.

Also I was 'happy' because, IMHO, T1 is much easier to manage. With every crumb I eat, I have a good amt of control over my bs. There is no diet or anything I need to avoid, except what my individual body does funky things with. I feel if I were T2 and someone said to me it could be controlled with diet and exercise, I'd never have the discipline. Even though I am a healthy eater and regular exerciser... I love my bagels and Rita's water ice

Tricia did your insurance cover the antibody test?? Mine rejected it and I had no clue until a $200 bill came in the mail... SURPRISE! It's considered investigative. Well wtf? I was sick, they ran a test to investigate. What is the problem? So we have to fight it. :

[~pi]

So many posts! I haven't been online as much lately because I've been away at a tiring, but productive, conference. I am now stopping at a city in between the conference city and my home for a weekend with my girlfriends from university, one of whom is due with *her* first three weeks after me.

Rachel, sorry to hear about the 600s. You must have felt lousy and to have the staff fuss about keeping DS3 with you is just stupid.

Originally Posted by colleen95

Hi Mamas,
I am 35 wks, and my high risk team are doing nsts including u/ss for fluid twice a week. This is making me really nervous. I am not concerned about the nsts, but it seems like an excessive number of u/ss. I had this many nsts with my 1st pg, but far fewer fluid level tests. Having recently been "fired" by my OB, I am anxious about saying no. Does anyone know where I can find a standard of care type document for high-risk pregnancies that would support my wish for fewer fluid scans? I know I have the right to say no to anything I'm not comfortable with, but I'm not feeling up to the looks I'm going to get, and the lecture, and the possibility that this group, too, will tell me that if I want to manage my pregnancy instead of them to find someone else. Any advice?

Sorry, Colleen, all the stuff I've seen on standard of care for T1 pregnancies suggests BPPs at least once -- and preferably twice -- a week.

I can understand being uncomfortable with it. Personally, I'm OK with u/s for medical reasons. I would never have an u/s for fun, but when there is a good reason, as interventions go, it's very low risk and noninvasive.

I am trading frequent BPPs/NSTs for a no-induction philosophy. My peri and I have agreed that we are both comfortable having me go to 41 weeks as long as everything looks good on the BPPs, and I am comfortable having them 1-3 times a week.

Originally Posted by widemouthedfrog

Oh, I just learned about a Yahoogroup called Positive Diabetic Pregnancies - you might want to check it out if you're not on it already. It might have the kind of info you're looking for.

Some of us are there already. I was going to list it in the resources but I wasn't sure whether or not it is a violation of the UA to direct MDC members to other groups. I've found it a good resource for "is this blood sugar pattern normal?" but am occasionally frustrated by some attitudes about birth, which is why, when I noticed a few T1 mamas here, I thought it might be good to start a tribe.

[zoe398]

I'm jumping in a little late...I'm not T1, but my DH was diagnosed while undergoing chemotherapy for testicular cancer. Havig the cancer gone (for 2 years now), we're realizing that maybe the diabetes diagnosis wasn't taken as seriously then since we were already dealing with the cancer diagnosis. We're coming to this late, but we're coming to it. My DH needs to see someone and take better control of his life and health care. What are some good sites I could visit? What would you all suggest as the first step? He had very poor care when diagnosed and hasn't really followed up. He's taking a 70/30 insulin 3x a day. He recently had walking pneumonia and the doc at the clinic was very adamant about DH seeing a specialist, that he needed to be on a different care plan. Any suggestions?

[hannahmom]

zoe - I can imagine it would be hard to focus on two things like cancer and diabetes at once! I'd have him start by seeing an endocrinologist (I got a recommendation from my family doc) and getting a Hba1c test to get some sort of idea about where is he right now... From there, once the endo has a handle on where he is, and whether or not his insulin needs adjustment, it might be helpful to see a certified diabetes educator who can help with the more day to day stuff like carb-counting etc...

Have you checked out the American Diabetes Association site? http://www.diabetes.org/home.jsp It has a lot of useful articles, recipes and even a message board.

Good luck!