So here I am at the end of a nice holiday and I open up one of my favorite mommy message boards and I see a post questioning the link between autism and terbutaline. Great, I’m just over my mommy guilt wondering if and how I may have caused my daughter’s autism and I see a post like this. When I was pregnant with my daughter I suffered from preterm labor; my cervix was dilated and thinning at 26 weeks. I was given steroid shots to help mature her lungs and terbutaline and mangesium sulfate to stop the labor; the labor stopped. I was then put on bedrest for the next 10 weeks and took terbutaline daily. My sister, who also experienced preterm labor, was on a terbutaline pump (intravenous via her leg) for a few months of her pregnancy as well. My nephew has experienced no developmental delays. Ava, on the other hand, has been delayed pretty much from the start.
I certainly don’t have the magic answer with regards to the origins of autism but seeing something like this certainly doesn’t give me a warm fuzzy feeling. Many of the mothers who responded to the post said that they, too, were on terbutaline and now feel guilty about not researching it. The original poster shared a few studies: beta2-adrenergic receptor activation and genetic polymorphisms in autism: data from dizygotic twins. and Neuroinflammation and behavioral abnormalities after neonatal terbutaline treatment in rats: implications for autism. . One is from 2005 and another from last month.
I decided to poke around the web a bit and found an interesting site: Terbutaline Lawyers. The domain was registered in 2004 so the suggested link between terbutaline and developmental delays/autism goes back at least that far. I was trying to find the origin of the studies first suggesting this link but was unsuccessful. I am curious how far back this goes. The poster on my mommy board was curious why this link wasn’t discussed in the media as a possible environmental trigger. My guess, without regards to whether or not I support this theory, is that not as many women are affected by the terbutaline plus autism combination as are by vaccinations and autism. I am just using this as an example as it seems that the vaccine/autism link is the most popular and therefore widely recognized theory.
Whatever the case may be, my daughter is my daughter and I take each day a step at a time. Each night when I go to bed I look forward to what the next day will bring me. I have two wonderful children that I am very thankful for.
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{ 17 comments… read them below or add one }
Well that’s just all you need after such a great day.
You know, it seems that almost every day there is something new with which we can beat ourselves over the head with. I’m sorry you’ve had this experience as so often you’re just bimbling along fine until some else decides to chuck a brick into the mix.
Best wishes
Thank you for posting this, that’s definitely how I feel, like someone chucked a brick into the mix.
I, too, was on terbutaline for 15 weeks and I DID research it (since I happen to do market research professionally and was pre-med in college, it was not too tough!).
I shared the available studies with my friends who are physicians, and NONE of them said that the science behind the studies was well done.
That being said, my son has had fine motor control problems and difficulty pronouncing certain sounds. We’ve invested in $$ of OT and speech therapy and things seems to be going well as he gets older. Other terbutaline kids I know have had similar muscle issues.
We wish you and your daughter all the best!
Big hugs,
Allegro
Thank you Allegro. I am a huge fan of OT, it has done so much for both of my kids. May you continue to see improvement in your son.
Just found your website. I was also given Tributaline a 8 months pregnancy due to a car accident…and then I was put on bedrest and taking tributaline daily. My son is almost 3…and is on the spectrum. He has never had any vaccinations or medication. So, I truely believe Tributaline played a big ROLE.
I was also on a terbutaline pump for 12 weeks due to pre-term labor. My daughter was born at 38 weeks and was 4lbs 13ozs. Now she is two and she has hardly any words and we are taking her to PT and OT. She has not been diagnosed with autism yet but I am sure she has it, I have worked in special edication for 7 years. From doing some current research I have also found that many people think that autism is linked to magnesium sulfate and the Rhogam shot. I was also on both of these medications as well as the terbutaline. So I really have no idea what casues autism.
I just found your website, I had researched this years ago and had came up with nothing. I was administered terbutaline through a pump back in 1993 for preterm labor. I had also been given Magnesium Sulfate as well. My daughter is now 15, she was diagnosed with Aspergers/Autism early on. Five years ago she was also diagnosed with Epilepsy. The difference in my case is the Doctor had misdiagnosed me and decided to put me on the pump with this company called Tokos. After being on this for months and feeling frustration with my doctor, I went for a second opinion in my 7th month. My new Dr. took me off everything and I carried full term and his thoughts were that the other Dr. was receiving kickbacks from Tokos. Five years ago, my daughter had her first onset of epileptic seizures. My daughter went into cardiac and respiratory arrest, we almost lost her. I have always felt that there was some link between Autism and Terbutaline. I contacted several attorneys after my daughters near death experience because I wanted to make people aware of this and do something about the safety of terbutaline, but because my daughter lived, we had no case, pretty sad system that we live in. My daughter is stabilized with meds for her epilepsy now. Has anyone experienced anything similiar? No Autism or Epilepsy run in my family and I have 3 other children with no disabilities. Please educate people about this, obviously I am not the only one.
Thank you for sharing your story Tiffany – what a sad story about the doctor receiving kickbaks and putting you on the terb pump. I am glad that your daughter is stabilized now – wishing you continued success with her epilepsy medication.
I am currently 33 weeks and on oral terbutaline every 3 hours. I am curious to know the dose of terb that others took. I have to confess, I am actually a Labor and Delivery RN and have never heard about the link. Though the doctors at my hospital on use the subcutaneous (shot) once or twice and then send patients home on Nifedipine. I personally go to a different hospital for care, and they send patients home on oral terb standardly. I have a follow up appt with my dr. on Tuesday, will definately try to convince him to change my medication. Any further information would be great. Thanks.
Hi Nicolette,
Congratulations on making it to 33 weeks! I do not remember my dosage at all, my daughter is now 5 and well – I’ve lost a few brain cells in the past several years hehe. I am not a doctor but from what research I’ve done (I’m also not a researcher, just a mom) – the link between autism and terbutaline is merely suggested but not conclusive by any means. There is actually no known, definitive cause of autism. The strongest “cause” of autism that I’ve read about is the genetic link – I know that in our family, that is the case. I was not on terbutaline with my son and he is on the spectrum. My sister was on a terb. pump with my nephew and he is the most neurotypical of us all.
Best wishes to you as you near the full term mark.
Warmly,
Melissa
Melissa,
I am currently doing research on terbutaline and birth defects. I noticed you said you weren’t sure when the link btwn terbutaline and autism first came up. Here’s the earliest study I’ve found so far: http://jpet.aspetjournals.org/cgi/content/full/308/2/529
It’s from November 2003, is about birth defects, and was cited by another article that explores the link w/ autism specifically.
Thanks for sharing information. Mothers need to be informed of possible risks to make the best decisions.
Hi Matthew,
Thanks for the link, very interesting!
Melissa
Hi everyone,
My son is 3 1/2 yrs old and was diagnosed with PDD-NOS at the age of 2. I was on bed rest and on terbutaline for 12 weeks (IV) due to pre-term labor. I was given magnesium sulfate also. I truly believe there is a link because, not only my son, 2 of my cousins and my niece all have developmental delays and their moms were all on terbutaline (either by pill or IV). This is a very frustrasting thing to deal with but we must be strong. Just seeing my little man every day brings me joy!
Good luck to all the moms!
Ameena
While there may be a link, I look at my beautiful autistic terb child and feel blessed that they didn’t miscarry at 28 weeks due to my preterm labor. Even if the terbutaline contributed to his autism, he’s alive. Without terbutaline, he would have died. I was contracting EVERY 2 minutes and luckily went to the hospital quickly…
My son is 12 and has been diagnosed with ADHD and speech difficulties (stuttering). He definitely stuggles with social interactions. I was on terb pump and complete bed rest from 26 weeks until he delivered at 35 weeks. My daughter is 11 and I took terbutaline orally from 24 week to 37 weeks. She has had significant speech delays, auditory processing problems and possible dyslexia. Is it related to the terbutaline? Is it from all of the vaccinations I was told would keep my child safe? Is it caused by gluten, yeast, allergies, cleaning products, pesticides? It’s enough to keep me in front of the computer reading blogs from other concerned parents such as you – all searching for an answer.
I’m not sure what to think of this…
I took terb at 27+ wks pregnant via two injections at the hospital to stop preterm labor. I went to my OBGYN the next day and she prescribed 2.5 mg of terb to be taken orally every 4 hrs as needed. I didn’t take it that often, because I was also prescribed nifedipine, which seemed to do the trick. Well, a couple days ago I started having contractions again, and pretty painful. My Dr said I could take 2 terbs if necessary. So, I did. the contractions almost seemed worse. Yesterday, I decided not to take it at all and just laid down on my side every time I noticed an increase in contractions. That seemed to work better than 2 terb pills. I started looking into terbutaline, because my initial research showed nothing about autism being a potential side-effect. Most of the autism websites actually seem to lean towards preterm birth, and/or vaccinations. There is no mention of terbutaline on any of the websites about autism.
This whole thing has me a bit panicked. I am wishing I never went to the hospital and just tried to lay down to see if the contractions went away. I hope this is not some greedy lawyers attempt in seeking money at the cost of making mothers feel guilty for trying to do what they feel is best, not deliver a preterm baby. That would be cruel. Though, it seems that there is a crazy theory behind every disorder, disease, developmental delay, and sickness. Who knows what to believe these days.
For now, I am scared. I feel stuck in a catch 22. I honestly don’t know what would happen if we had a child with autism. The divorce rates are higher. How would it affect my daughter? Would my husband’s family be accepting? Or would they blame me for being a bad mom and not controlling my child? Would my husband stick up for his child?
This is extremely scary to me has pretty much crushed me since I found out that I may have done something to my child that could destroy his life and our family’s life.
Hi Kelly,
I am sorry that you are dealing with the stress of thinking about this on top of everything else. I can only share my story but I can say that I have two very happy children. Both are on the autism spectrum but I only had terbutaline with one. Ava, who I discuss here, has made great leaps and bounds and is such a happy and healthy little girl.
Best wishes to you and may you have a healthy rest of your pregnancy.
Warmly,
Melissa