Side Effects of Terbutaline

[Sam_2.0]

I've done some research on what we can do now to help Aubree. Seems like the only potentially effective treatment in the womb to help raise her heart rate and help the hydrops would be terbutaline. Another benefit is it also helps stave off pre-term labor (not that we have been having problems, but she needs all the time on the inside that she can get). Her cardiologist said it was worth a try but they can't prescribe it for me since they are not my doctors. So I have a call in to my doctor to request it and get the ball rolling.

I've talked with DH more about it and now that they might actually give it to us, he's very concerned about the side effects for me. From what I can find, it seems like the worst that could happen would be an allergic reaction. Otherwise it will cause my heart rate to go up, and it needs to get up over 100 in order for there to be enough of an effect on Aubree that it will raise up her heart rate too. As long as I am healthy, and there's not been any concern about my health at all this point, then I think it will be fine to give it a try. Seems like there are no long-term effects, so if it gets too much to handle then I just back off taking it.

Anyone out there with medical experience that can tell me if there are other side effects I am missing? Any long-term dangers to worry about for my health? Of course I will be asking our doctors and pharmacist, but I am too impatient to wait until tomorrow

[Deleted]

Other questions you might want to ask as you are gathering information are...
What are the chances this will have the positive effect you are hoping for?
Are the odds of it helping greater than the odds of a rare, yet severe reaction to the medication?

[Sam_2.0]

Sorry for your loss, lone Our baby is already experiencing heart failure and could likely pass away at any moment. We need to get her heart rate up to reduce the fluid accumulating in her little body before it is too late. The only other option is to deliver her early but she's still too early for that. We would have to make it about 5 more weeks before they would really consider it.

Good questions, oped. They said it has about 20% chance of working for her due to the degree of heart block and the causes of it (structural damage v. auto-immune response). Given her risk of passing away is almost 100% unless some kind of intervention is given, I am willing to try it. Guess I need to ask about the chance of me having a serious allergic reaction. I only react to one other kind of medicine but I wouldn't want them to be related at all or to find out the hard way I am allergic to this one.

[InsertCoolName]

I took that from about 20 weeks til I went into labor about 35 weeks with my 3rd. I had zero effects. The only thing I was told was it could make him hyper/ADD.

My 3rd baby came almost 6 weeks early and weighed over 6 lbs. he's a very healthy and smart almost 8 yr old today.


I really hope and pray that you are able to get whatever to help.


Edited to add: I started going into labor at 20 weeks.

[Jaguar]

Jul 16, 2013 22:02:12 GMT -5 Sam_2.0 said:

Sorry for your loss, lone Our baby is already experiencing heart failure and could likely pass away at any moment. We need to get her heart rate up to reduce the fluid accumulating in her little body before it is too late. The only other option is to deliver her early but she's still too early for that. We would have to make it about 5 more weeks before they would really consider it.

Good questions, oped. They said it has about 20% chance of working for her due to the degree of heart block and the causes of it (structural damage v. auto-immune response). Given her risk of passing away is almost 100% unless some kind of intervention is given, I am willing to try it. Guess I need to ask about the chance of me having a serious allergic reaction. I only react to one other kind of medicine but I wouldn't want them to be related at all or to find out the hard way I am allergic to this one.

Good Luck Sam

[mmhmm]

There are some side-effects associated with Brethine (terbutaline) that can be problematic in some people.  Your doctor will be aware of your history and any conditions that might be significant.  The best thing to do, IMO, is to have a good sit-down discussion about this with your gynecologist/obstetrician, who will have your records and know your general health.  I'd call and make an appointment right away, Sam, and let the person who makes appointments know what you want to discuss so the proper amount of time can be scheduled.

Best wishes, hon.  I'm so sorry you're going through this.

[Jaguar]

Sam_2.0 , What have you learned about this?

[kittensaver]

Sam - I know I'm late to this "party" - but where do you live? Will your insurance let you travel for outside medical consultation?

I ask because UCSF (University of California San Francisco) has a world class Fetal Treatment and Surgery program in its hospital. They saved both my DN and her twin boys who had a moderate-to-severe case of TTTS (twin to twin transfusion syndrome). They all came through unscathed due to the awesome medical intervention and care when the family doctor back home was talking in hushed tones about poor outcomes and termination being the kindest and safest route. UCSF is famous on the Left Coast for helping all kinds of difficult cases.

I'm late to your situation so maybe you already have specialized pre-natal care by pre-natal experts? If not and you're interested, please PM me and I can send you links.

ETA: here's my DN's story, as told to the San Francisco Chronicle. The boys are now both 7 years old and have no medical or behavioral problems. They learned to read at age 4 and are doing great in school, in sports and in life. I know your baby does not have the same medical problem, but as I said before they are experts in all kinds of dire pre-natal conditions.

www.sfgate.com/default/article/The-Miracle-Babies-Advances-in-fetal-surgery-at-2589618.php#photo-2700405

My good wishes and prayers are with you!

[Sam_2.0]

We got our official transfer to the high-risk prenatal care today. I passed my physical and got my clearance to deliver there, so Aubree can be immediately transferred to the CICU. We've got a whole team we are working with - perinatologist, maternal fetal specialist, electro-physiologist (?), cardiologist, neonatologists, and I am sure I am forgetting someone.

We got the terbutaline today and I will get started with it tomorrow. At this point there are no intrauterine surgical interventions available. It looks most like we will check her out about every week from this point on and take her early when the risks of staying in outweigh the risks of prematurity (most likely 32-34 weeks).

[Jaguar]

Jul 18, 2013 21:28:28 GMT -5 Sam_2.0 said:

We got our official transfer to the high-risk prenatal care today. I passed my physical and got my clearance to deliver there, so Aubree can be immediately transferred to the CICU. We've got a whole team we are working with - perinatologist, maternal fetal specialist, electro-physiologist (?), cardiologist, neonatologists, and I am sure I am forgetting someone.

We got the terbutaline today and I will get started with it tomorrow. At this point there are no intrauterine surgical interventions available. It looks most like we will check her out about every week from this point on and take her early when the risks of staying in outweigh the risks of prematurity (most likely 32-34 weeks).

All the best, my thoughts are with Aubree, you & your family.

[Sam_2.0]

Thanks

[wvugurl26]

Good luck Sam! I'm in awe of the strength you have to continue to fight for her and little Aubree for hanging in there.

[kittensaver]

So glad to hear you are getting the specialized care that you need. Prayers going out to you and your family for a good outcome!

[Jaguar]

Sam how do you take this terbutaline drug and is this terbutaline sulfate ? If there's side effects will you have them early ?

[Deleted]

Good luck Sam! 

[Peace Of Mind]

Jul 18, 2013 22:26:44 GMT -5 kittensaver said:

So glad to hear you are getting the specialized care that you need. Prayers going out to you and your family for a good outcome!

  I hope you do well on the medication and that you and your daughter teach them to not give up - ever! 

[Sam_2.0]

Jul 19, 2013 14:01:05 GMT -5 Jaguar said:

Sam how do you take this terbutaline drug and is this terbutaline sulfate ? If there's side effects will you have them early ?

They are doing pills, since the IV carries more risk. They started me out on the lowest dose. So far so good today - I can feel my heart beating faster, but it's not over 100 consistently. More in the 80-90 range (checking every hour). We might need to up it a bit. I take it every 6 hours, 3 times a day (skipping middle of the night so I can attempt to get some rest). Two doses in so far. No pain or allergic reactions, which is good.

The other problem with this drug is that my body will acclimate to it and it won't raise my HR anymore after a few weeks. That's why they started with a low dose so they can work up if needed. Same thing will happen with Aubree too.  But I am hoping it buys us enough time to get her closer to 32 weeks so they could deliver her. It sure has made her busy today!! She's been moving and kicking all over the place.

[Jaguar]

Glad there's been no allergic reactions. Yeah you want to buy time at this point. Every day Aubree gets a little stronger.

[Jaguar]

How are you feeling today Sam ?

[Sam_2.0]

Jul 20, 2013 21:48:55 GMT -5 Jaguar said:

How are you feeling today Sam ?

I am good, sweet of you to ask. We hit 28 weeks today!! I really feel like one way or another we will have a baby by the end of August. 32 weeks seems to be the magic point where they would consider taking her since she should be big enough to put a pacemaker on by then. Almost seems too much to ask for four more weeks after we've already had 12 more than they initially thought possible.

[Jaguar]

Good for you Sam, I wish all the best.

[Sam_2.0]

Could a stuffy head/cold-type symptoms be a side effect of this medicine? There's a summer cold going around here so I don't know if I just happened to catch it at the same time or if it's from what I am taking.

[Jaguar]

That doesn't sound like a side effect but ask your doctors.

[Angel!]

Jul 18, 2013 21:28:28 GMT -5 Sam_2.0 said:

We got our official transfer to the high-risk prenatal care today. I passed my physical and got my clearance to deliver there, so Aubree can be immediately transferred to the CICU. We've got a whole team we are working with - perinatologist, maternal fetal specialist, electro-physiologist (?), cardiologist, neonatologists, and I am sure I am forgetting someone.

We got the terbutaline today and I will get started with it tomorrow. At this point there are no intrauterine surgical interventions available. It looks most like we will check her out about every week from this point on and take her early when the risks of staying in outweigh the risks of prematurity (most likely 32-34 weeks).

I know I am late to this thread, but I am so happy for you!  I know you have been fighting the odds this whole time, but I am glad you now have a whole team working with you on this.  I think of you every day and hope that things continue to go well

I didn't know you were facing hydrops as well.  I truly hope the medication helps.