Mamas with type 1 diabetes - Page 3 - Mothering Forums

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Old 05-04-2006, 03:25 PM
 
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Can I come live with you in august?
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Old 05-04-2006, 09:02 PM
 
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You bet! I think everybody should have an OB as good as mine. Heck, he delivered twins with the mama squatting, he's just that wonderful!

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

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Old 05-05-2006, 10:30 PM
 
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Welcome Mady,

Wow, you have had a tough year. I remember so well those afternoon crashes, and waking up way too high. Seems to me that your endo has every reason to prescribe a pump. I know that they make you jump through some hoops at the Joslin to get one, though (my cousin did it last year.) But it will be worth it.

I also recognized feeling awful because your baby wanted you, and you just couldn't do anything. But I think that's part of motherhood, too. Now that I'm hugely pregnant, I have to say no to my ds a lot more than I would like, especially when he wants to be carried. And in spite of the fact that my ds was diagnosed at 12 mos, I believe that having diabetes has not detracted from my mothering abilities.

Best wishes to you getting your blood sugars more evened out. Since you are relatively newly diagnosed, it may be disappointing to you that they will never be "normal." All of the diabetic training materials still say that as long as you do everything right, you should be able to get stable blood sugars. I think for the vast majority of us, that just isn't true. There are so many factors, many of which are a complete mystery, that affect blood sugar. I do think the pump is the best tool available, though, and one would certainly solve your dawn phenomenon problem and your afternoon drops.

Welcome again!

Colleen
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Old 05-05-2006, 10:39 PM
 
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EJ,
Have you thought about just following your own birth plan? Just smile and say "no thank you" to everything, or go hide in the bathroom? That will get you off the monitor. I so sympathize with what you are going through. My first OB was very opposed to no IV and no continuous monitoring. I figured worst case, I would labor as long as possible at home, then just say no to everything when I got there. How will your dh be about getting between you and a pushy nurse? Is there someone else who could be there with you? I know they're all going to want a strip when we first arrive at L&D, but they really cannot force you to keep it on, right? I know you don't want to plan on fighting while you are in labor, but that may be the only way to get the birth you want.
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Old 05-06-2006, 10:23 PM
 
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Just wondering what you mamas thought about this. I have had more than one crying sessions over not banking my ds's cord blood (since he was diagnosed with d), but now that I'm pg again, I'm still not sure. I know that there is a study going on now that's looking at using a child's own banked cord blood to treat type 1.

Obviously if money weren't an issue, we'd just do it. But putting nearly $2000 on a credit card makes me nervous.
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Old 05-06-2006, 11:48 PM
 
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Hi Colleen,

We did it, and my diagnosis was the main reason. Do you know the particular study? I am curious. I thought that I had read something about a study, but I didn't know that it was actually successful at all.

That said, I think that for many disorders, the problem may be in the blood as well, so it's not too useful. And it is a new technology.

At the time, we had just sold our apartment and had a little extra money around, so we did it. If it were today, I don't think we'd be able to afford it...although we'd probably feel guilty.

Anyway, I wouldn't beat yourself up about it one way or the other.

And there are always public cord blood banks, too, if you want to donate it. That goes to research, too. Usually, I am all for the charitable, public good thing to do, but this time I did cave and decided to do what I thought might be good for us, and only us.

If you do it, make sure you bring the kit to the hospital - in our haste to go in, we forgot it in the car, and dh had to make a mad dash after dd was born....

Tricia

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Old 05-07-2006, 12:51 AM
 
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If you donate it will they let you use it if your child ever needs it?
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Old 05-07-2006, 03:22 AM - Thread Starter
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We aren't banking. We are looking into donating whatever cord blood is left over after the collection for TRIGR, though.

Besides the fact that we can't afford private banking, I would be willing to bet heavily (and I guess in a way we are) that should there ever be something that can be done with stem cells to create islets, the technology for other sources of stem cells will be there anyway. There is so much work being done in that area. I could be wrong, but that's the way I see the science heading.

Quote:
Originally Posted by colleen95
I know that there is a study going on now that's looking at using a child's own banked cord blood to treat type 1.
Really? This is news to me. Who is running it?

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

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Old 05-07-2006, 03:23 AM - Thread Starter
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Quote:
Originally Posted by Darcy37
If you donate it will they let you use it if your child ever needs it?
Generally yes, if there is any left.

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

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Old 05-07-2006, 02:11 PM
 
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I got this from someone on Parents of Pumpers:

Quote:
New Study Aims to Treat Type I Diabetes with Banked Cord Blood

Dear CBR Client:

If you have a child who has been diagnosed with type 1 diabetes and you
banked his or her cord blood, you may be eligible to participate in an
exciting study that offers new hope to these young patients. Researchers at
the University of Florida believe that a child's own banked newborn stem
cells may be ideally suited for regenerating insulin producing cells within
his or her body. To learn more about the trial, or to see if your child may
be eligible to participate, please click here. Please note that a sibling's
cord blood unit cannot yet be used in this trial.
This is from the CBR website:
http://www.childrenwithdiabetes.com/...lood200503.htm
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Old 05-08-2006, 12:12 AM
 
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Hi Colleen,

Many thanks...I think ours is accredited, even though it's in Canada. That sounds great! I'll keep my fingers and toes crossed that Lauren doesn't have d, though, but we're going to put her into Trialnet after mid-June.

Tricia

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Old 05-08-2006, 03:51 PM - Thread Starter
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Thanks, Colleen! I will check it out.

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Old 05-14-2006, 08:18 PM - Thread Starter
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So I'm very lucky with my health care team in general, but I'm having trouble with one of the endos. I the one I usually see, but she has been away the past month and so my last four appointments have been with the one I dislike.

She's head of the department. Why, I do not know ... she has a pathetic publication record and IMHO is not a great clinician, either. I never feel like she is listening to me, and her math skills are atrocious, which means that whenever we're talking about pump adjustments I have to correct her to make sure I understand what she means.

She actually complained at my last appointment that pumps make things harder for her because of the flexibility they afford patients. I mean, I understand that yes, it would be easier for her to understand changing insulin usage if I were on a strict MDI regimen, but come on, let's weigh her slight inconvenience in working with pump ratios against my considerable inconvenience in using MDI. I think she wants robots for patients, honestly.

However, my main issue with her is the doom and gloom attitude she brings to clinical encounters. Every time I see her she starts talking about all the possible reasons I could get admitted to the hospital any moment now. I think she's a bit of a power-tripper, too, since she told me proudly that, "We are usually the ones who tell the OBs when it's time to admit you."

At my last appointment, she told me that about a third of women who have had type 1 for 20+ years will deliver before 35 weeks. I asked what that stat was based on, she told me there were a few cohort studies and it was also borne out by her clinical experience. So after having a good cry in the washroom on my way out of the clinic : I went and did a lit search to find said cohort studies. I came up with nothing; in fact, I found that the stat is generally much lower than that and that almost all cases of preterm delivery in type 1 pregnancies are associated with complications of type 1 that I. DO. NOT. HAVE.

I'm going to try to find out if there is some way that I can not see her any more, because she is really driving me insane.

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Old 05-14-2006, 11:46 PM
 
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Maria,

Honestly, specialists (or anyone) like that make me so frustrated! We have brains too, people....

It has been a rough 2 days. I think that my pancreas goes downhill in episodes. For the last 48 hours I've been high - not DKA high, but uncomfortable peeing all the time, grumpy and feeling nasty high. Anyway, I've switched some basals in the wee hours and I am hoping to gradually make improvements. This has happened to me once before, and hopefully this is the last time I have such a huge jump in basals/ratios. I am almost at the "usual" total daily dose of 30 units, so I suspect the old pancreas has almost given up. Coming after my GAD antibody test, I think it just decided that it was time. For those of you who know The Importance of Being Ernest, it's kind of like his friend Bunbury, the imaginary invalid - Bunbury was told he could not live, so Bunbury died. Hence goes my pancreas... (gosh, I'm a little odd)

So this morning I had a temper-tantrumy morning (me having the tantrum) because try as I might (hot shower, run around the block), I felt awful and NOTHING would bring the BG down. Finally I plummeted downwards. Growl. Happy Mother's Day!

Hope that others had a better one!

On the good side, I now have enough data to officially enrol Lauren in Trialnet. The package is coming this week!

Oh, Maria, I am sure you know how to do this, but I have 2 things that I would get organized pre-baby.

1. Access to a good lactation consultant/post-partum doula/health nurse/LLL leader.... I had uncontrolled diabetes in the first few weeks, which caused some breastfeeding issues. You won't, so hopefully it will not be a problem, but it's good to have a support system in place.

2. Figure out how to deal with unplanned exercise after a meal. My daughter isn't much of a napper, and many a time I have gone for an unplanned walk after breakfast to put her to sleep. And many a time (until I figured out how to deal with it) I went low, despite eating lots of sweet things during the walk.

Lauren was due July 9th, by the way (actually, a little earlier according to my estimation). She was 2.5 weeks early, not 5. And I haven't read a lot about T1 and pregnancy (since I was officially gestational), but from what I've read, I didn't see a lot about 5+ weeks pre-term birth. Maybe a little early due to all of the inductions, though. And early babies run in my family, anyway (along with fast labours, but that is another story).

Ok, enough pontificating. I hope that everyone else had a wonderful Mother's Day.

Tricia

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Old 05-15-2006, 08:18 AM
 
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Sneaking in here for a question...I'm doing research for a friend whose 7 yr old daughter was just diagnosed. They already are way beyond the diet recommendations and are looking at the carb thing, but this is their first time dealing with the allopathic world after homebirths and not vaxingso they're blown away to say the least. I've shared the two websites already mentioned in this thread and now they're wondering about how to best support her immune system, and her general health. If you all experienced women have any advice, or places to send me to research for them, I'd appreciate it. I'm NAK a lot with a new babe, but books are also good. Also, any thoughts on the support we, their community, can provide to support them would also be lovely.
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Old 05-15-2006, 11:17 AM
 
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Hi hotmama,
How nice of you! Hope that they are doing ok.

You just inspired me to go through my list of links and make a file.

Here are some books and some links. Hope these help.

Tricia

insulin-pumpers.org (Insulin pumps, an excellent method of delivery)
Good email lists.

http://www.collinscreations.ca/ Pump pouches, homemade

www.trialnet.com (Clinical Trials)

www.diabetesforums.com (General information)

http://www.jdrf.org/ (will connect you with a mentor)

http://www.glycemicindex.com/ (A step beyond carb counting. I eat primarily low-glycemic foods, since they make my blood sugar easier to control)

www.quinoa.com (For the best non-wheat, low-glycemic grains around. Free shipping!)

http://www.childrenwithdiabetes.com/ Products and info

http://www.immuneweb.org/lowcarb/ For people looking for vegetarian, lower-carb recipes

http://www.westonaprice.org/moderndiseases/index.html (Weston Price on diabetes, mostly Type 2, but somewhat helpful)

Books
How to prevent and treat diabetes with natural medicine - Michael Murray, Michael Lyon
Think like a pancreas – Gary Scheiner
Pumping Insulin (for those with pumps)

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Old 05-15-2006, 01:02 PM
 
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Wow! That's what I was hoping for...I'll dig through and pass it on. Thanks so much
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Old 05-15-2006, 04:53 PM - Thread Starter
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Hotmama, a couple more resources:

http://diabetesmall.net/ One of my favourites. Tons of info, links, products, books, etc.

http://uniaccs.com/categories.asp?id=2 Pump accessories.

Quote:
Originally Posted by HotMama
They already are way beyond the diet recommendations and are looking at the carb thing, but this is their first time dealing with the allopathic world after homebirths and not vaxing so they're blown away to say the least. <snip> Also, any thoughts on the support we, their community, can provide to support them would also be lovely.
My 2 cents:

That's really nice of you to be looking into how to support them. As for specifics, this really depends on your friend, but I think it can be especially hard for people who are used to being firmly outside the medical establishment to be all of a sudden thrust into it, so it's nice if the people around them can be sensitive of that.

For me, it can be really hard to hear or see eye-rolling about Western medicine because while I definitely think that over-reliance on it is a bad thing, complete dismissal of it, particularly in the context of a diagnosed, treatable disease, can be equally narrow-minded. I find it personally difficult to hear statements that ignore the possibility that there are times when allopathic methods are useful. So depending on how your friend feels about that, you might want to keep an eye on how the community discusses her dd's issues.

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Old 05-15-2006, 04:59 PM - Thread Starter
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Thanks for the tips, Tricia!

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Old 05-17-2006, 08:57 PM
 
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Hi Maria,

Sorry your endo is such a b@#ch. I know it's stressful looking for a new dr at this point, but you need someone who will be supportive and encouraging. Trust me. I was so upset having to find a new OB at 35 wks, but it has made such a big difference and was very much worth it. Did you say you're in Toronto? You could try checking the insulin pumpers endo recommendations list. She actually sounds like someone I used to see there at U of T.

I have never heard that preterm labor is a complication of Type 1. Try to put it out of your mind. I suspect the reason many type 1's deliver premies is because they are induced.

Hugs to you. You are doing great, and growing a perfect, healthy baby.
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Old 05-17-2006, 09:05 PM
 
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Turns out this referral won't help Maria, so I deleted it.
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Old 05-18-2006, 12:23 PM - Thread Starter
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Thanks so much, Colleen.

There are two endos in the clinic. I *love* the other one and it was just my bad luck that I happened to see the one I disliked for my last four appointments. Through some good luck and careful suggestion, I was able to arrange it so that I will only see the one I like from now on.

I'm so glad that you got a better OB!! I hope all is going well with you!

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

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Old 05-26-2006, 06:55 PM
 
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I was busy browsing the site looking for the legal ramifications of refusing the eye drops/ointment and HepB vax in my state and stumbled on this thread. I'm in a couple other groups with pregnant Type 1's, but crunchy they are not! I usually get rude or "dead babies" comments when I mention things like avoiding earlyinduction and breastfeeding to treat newborn hypos. You guys all seem so well informed and proactive. I was starting to think I was the only one out there making my own adjustments to my regimen and who questioned the "wisdom of the experts."

A little background on me - I'm 32, I've been Type 1 for 22 years and pumping for nearly 13 years. I'm 35 weeks pregnant with my first tomorrow. So far this pregnancy has been pretty uneventful. My A1c was 6.5 when I conceived and it's been 5.5 or lower ever since. I've just smoothed out the most recent (and I'm hoping LAST) past of resistance in the past couple of days. It's scary how much insulin I'm on - nearly quadruple my prepregnancy dose but at least I know that means that my placenta is still working well!

I have been quite lucky to have a really supportive medical team. My endo and CDE usually just tell me how well I'm doing and that they'd be out of a job if all their patients were as proactive. They don't freak out over a lone high reading or even several since they have a clear grasp of how resistance works and that it takes a couple/few days to work out. My OB is supportive of letting me go to 40 weeks as long as everything looks good, I think I'll be able to convince her of close to 41 since my due date is July 1 and I've got that whole holiday weekend to my advantage. My only concern at this point is the baby's size. His last u/s suggested he was in the 90th percentile for weight. It's frustrating since my sugars have been in such good control. But I'm just writing it off to my husband's height!

I'll stop with my novel now, but I look forward to hearing more from this group!

Katherine
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Old 05-26-2006, 07:44 PM
 
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I just got my latest A1c back and its horrible. I knew it would be bad, but I didn't think it would be this horrible. I'm embarrassed to even post what it was but lets just say it represents an average bloodsugar of over 300:

Can anybody give me some good ways to get back into shape?

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

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Old 05-26-2006, 08:09 PM - Thread Starter
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Welcome, Katherine!! (And come join the July DDC!) Sounds like we're at almost exactly the same place!

My insulin needs have just started dropping slightly from about 100-120 TDD (2.5 - 3 times normal) to more like 100, which has me mildly concerned, but it isn't totally unexpected at this point, plus I've been a lot more active lately. I'm keeping a close eye on it, watching for big drops, and using healthy placental thoughts for my hypnobirthing mantras!

Quote:
Originally Posted by MommyBear
I just got my latest A1c back and its horrible. I knew it would be bad, but I didn't think it would be this horrible. I'm embarrassed to even post what it was but lets just say it represents an average bloodsugar of over 300:

Can anybody give me some good ways to get back into shape?
Rachel.

Does the 512 have an alarm you can set for post-bolus testing? When I've had trouble in the past, one of the big things that helped me was setting my pump to alarm first at two hours, and then one hour anytime after I bolused.

I'd also check your basals and do some basal testing. (Do you have Pumping Insulin by John Walsh?) If your A1c is that high, I'm guessing you're probably having overnight trouble? I've always found that if my overnight basals are fine, everything else just kind of falls into place. And it makes a huge difference to my A1c to have 8 hours of nice, level sugars every day.

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Old 05-26-2006, 08:33 PM
 
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I have no clue how to figure out what my basals should be. Other than trial and error that is and I'd really like to avoid going low while I'm alone with the kiddos. I haven't been checking my sugars because I just can't remember to do it. Even when my pump alarms, I rarely hear it (I've learned to tune it out). I know I've got some depression issues going on that I'm sure are playing into this but I don't have anybody to talk to about that. Life just seems so screwed up right now. When my endo did the guilt trip thing saying "If you don't take care of yourself you may not be around to see your boys grow up" I didn't even blink. I know that. And sometimes I feel like that might happen and somebody else would raise my boys. It scares me that that isn't enough to whip me into shape.

Boy, I've shared way more than I planned to.

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(12/26/06) (5/11/09) (10/7/09)x2

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Old 05-26-2006, 08:51 PM
 
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Aw, Rachel It's so easy to get depressed with all of this, I know. And an AIc like that must make you feel extra nasty. I know that when my Bgs go above - say - 180, I get really grumpy and depressed.

Oh, and did you have thyroid issues as well? I think that those can lead to depression too. If you haven't had your levels checked, it might be a good idea. I have a bit of hypo-thyroid, and my aunt has it in spades, and I know it's really affected her.

I've flipped through pumping insulin. It's somewhat helpful. Have you been to the insulin pumpers web site? Google it and it'll come up. They have a great email list for pump tips, tricks, and just support. Everyone there is going through the same sorts of things....

I test a lot. For me, a relative beginner, that's the only way to get to know my body. From that, I've learned that a normal bolus just won't do for lunch or dinner - I go low at 1 hour. I also test in the middle of the night (dd kindly wakes me for that one ) to check basals, since I used to go low then. Maybe one day I will feel ok not checking, but for now, I do.

The only way I can feel sure about my basals is by fasting. When I first started on the pump, I fasted all morning into the afternoon. You don't need to go that crazy, but skipping a meal is necessary to check them. If your BGs stay within ~20 (1 point in Canada), then you're stable. Then you know that any problems are in the meal time ratios. If your BGs rise and fall a lot while you're fasting, you'd change the basal rate a couple of hours before. For example, if you're around 100 at 9 am and at 11 am you're at 180 (without eating), you'd edge up your basal rate between 9 am and 11 am. Then you'd try again the next day to check the impact.

I hope that makes sense. Pumping Insulin likely explains it more clearly. Do you have a supportive diabetes or pump educator around who could talk you through it?

I agree with Maria -night time is key. I try to fine tune my dinner ratios and eat lower-carb for dinner so that any errors aren't as large. I check before bed to see where I'm at. If I find that I am consistently waking up high or low for a week or so, I check my basals in the middle of the night.

Katherine, welcome! Great to hear that your insulin needs are still going up. Mine dropped a little earlier than they should have, which was a tip-off that babe was going to be born a little early. As per usual in my family, though with d I was concerned about lung development, etc. Although none of us chose to be in this tribe (d-wise, that is), it's great to have folks to hang out with once we're here.

Ok, talk about novels!

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Old 05-26-2006, 09:18 PM - Thread Starter
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Rachel, I'm so sorry you're having such a hard time. If it helps to know this, I've definitely been there (depression, poor control, etc.) It's a tough, tough place. Depression is actually more common in diabetics, and it's a hard cycle to get out of, because when your sugars are wacky, you don't feel good, and then you're less motivated to take care of yourself, etc.

I would really recommend Pumping Insulin as a resource on basal testing. If you can afford it, order a copy from amazon (here is the link) and if not, your library should have it. It has a great section on how to test and set your basals. Honestly, I would bet money that if you got your overnight basals set properly, things would really start to look up. If you can't find a copy, PM me and I'll see if I can scan and send you the relevant section.

As for the testing, maybe you can make yourself a rule that works with your kiddos, e.g. every time you feed them, you do a quick sugar check before or afterwards, whichever works best for you.

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

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Old 05-27-2006, 06:18 PM
 
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Hello Everyone,

Welcome Katherine! Glad you found us. Sounds like you have a great team for your pregnancy, so congratulations. That seems to be a big challenge for most of us. Wow, pumping for 13 years! I bet you've learned a few tricks and seen a lot of progress. About your baby's size, try to put it out of your head if you can. Everything I've read says that growth scans are "wildly inaccurate." You're nearly there now, too. Are you worried that your docs will want to induce for size, or about birthing a big baby? If it's the latter, I've read some great stories lately about 9+ lbers just sliding right out! Have you read Ina May's Guide to Childbirth? She's included some really inspirational birth stories. My last scan, at 38 wks put my baby girl in the 80th percentile or 8 lb 2 oz, but I'll be absolutely shocked if she's that size even at birth.

Rachel,
Wish I had some magic words to help you. I have just one child now, and I know it can be really tough to focus on yourself. But that's what you need, I think. Is there any way you can get some time on your own to relax? I have so been there with my bgs being completely out of control. In fact, I was completely out of control for the first 24 yrs of my life. I just felt like I couldn't do it and was afraid of the number I'd see if I did check. Your dr using scare tactics probably won't help. I'm sure you're feeling fear already. For me, the only way to get back in control was to feel like I had the ability and strength to do it. And I for one believe in you and know you can do it. Can you talk to your dh about helping you? Maybe start with testing before meals at least so you can bring down those highs and not feel so yucky? Constant highs will leave you feeling awful and defeated. Let go of feeling guilt about high numbers. They are just a number, not your fault. Getting past my fear of lows has helped get my a1c down, too. Do you have glucose tabs around, or smarties? If your a1c suggests an average of 300, I would guess you could up all of your basals by 10-20% right off the bat. And it might be relatively easy to get your insulin:carb ratio by checking pre and post meal a few times. If there's anything we can do to help, let us know. I'd be happy to pm you my phone number, too, if you ever feel like talking or venting.

Maria,
It's funny that you mentioned that your insulin requirements are dropping and it's got you concerned a bit. Same here. With my first, my perinat said something like it was good that my resistance kept going up because it meant my placenta was healthy, so now I've got that in my head. But my current team doesn't seem at all worried that my resistance is going down. I'm trying not to worry about it. Baby seems very healthy based on all my nsts and her movement.

As for me, my due date is Monday. I'm halfheartedly trying natl inducution (dh is doing his part if you know what i mean, brought on lots of ctx! And took some evening primrose today.) By Monday I'll probably get more serious about it. But I'm not quite ready! I really want my house a bit tidier, baby girl's clothes put away, etc. But my midwife said last week, "don't go past due and make us worry about you." so I'd really like for baby to come by the middle of next week. And I am so excited about the birth. I'm feeling very empowered and supported, which is a wonderful change from where I was a month ago.

Take care everyone!

xo,
Colleen
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Old 05-27-2006, 09:29 PM
 
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Have a wonderful birth, Colleen!
I think that insulin requirements are supposed to drop before birth, aren't they? Or am I wrong about this?

I agree wholeheartedly about not beating yourself up for highs. I used to be such a perfectionist, before d and before baby. Now, I get by, I correct, I know I'm as perfect as I am going to be. Which isn't very perfect at all.

Tricia, treehugger.gif wild.gif geek.gif mama of dd (6) 

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