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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{ 27 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
I found this website because I just heard of a connection between terbutaline and ADHD. I was on a terbutaline pump for 1 week when I went into pre-term labor with my frat. twins at 31 weeks, after magnesium sulfate didn’t stop the contractions. My boys were born at 32 weeks. Now at 11 years old, one has ADHD and the other does not. It gets more interesting. Their brother, born full term with no drugs, just short of one year before them, has ADHD also. Their sister, 7 years old, who was born at 34 weeks, was diagnosed with ADHD last year. I was on mag. for 72 hours when I was 31 weeks pregnant with her, but I was never given terb. I can’t figure out what’s going on with my crew! I agree however, the terb. and mag. gave me extra time to get steriods to the babies lungs, now I have healthy and happy, if hyper kids.
I JUST found your blog….after I just happened onto some info about terbutaline and autism. I was on terbutaline in 03 for 4 weeks. My son, who was born in 03, was diagnosed with Autism 2 years ago.
My son just got diagnosed aut… He is 4….. I was on terbutaline as well since 6 months of pregnancy. I had a horrible pregnancy and a terrifying labor. I was bleeding in 6 months and was hospitalized. After my child was born, he was in the ICU for approximately 6 weeks. The doctors informed me at the time of his birth that he could not cry or suck. I noticed that as well. Diagnosed as extremely low muscle tone. To this day he lacks the fine motor skills the other kids have. I am a single parent of 3 kids and he is my youngest. It feels like I have been struck with a train, I am confused, petrified, and full of guilt……someone please help, I have no Idea where to look for help. Thanks
Doe eyez,
Look up your local feat chapter. It stands for Families for Effective Autism Treatment. Go to http://www.FEAT.org They will be a great resource in helping you find help locally, weather it is a support group or ot/pt ABA therapist and the like. Fortunately your child is a boy and the information will be pretty prevalent. It is a lot harder to find information specific to girls on the spectrum.
My daughter was also diagnosed this year she is also 4. She however was diagnosed with Aspergers Syndrome.
My best advice to you is learn everything you can. You are your childs best advocate and you know your child best. Don’t second guess yourself. Also Start working with the school district for early intervention. Your child is entitles to an IEP it is a right he has based on federal law so it doesn’t matter what state you are in. After age 3 it is the school districts who evaluate and pan an IEP. You are a part of the IEP team and your voice matters, but do make sure you document everything.
Feel free to contact me if you want to talk or have questions. I’ll do my best to answer them or point you in the right direction. I spent the last year researching Autism Spectrum and fought for my daughters diagnosis. The doctors kept saying she is on the extreme end but ets just wait and see, she’ll out grow it. This is not the case and I had been dealing with compounding issues since she was about 19 months old.
Anyways contact me if you want you can write me at india underscore inkk at yahoo dot com.
Best wishes to you.
OMG I just found your blog. I have two children one is 10 and the other is 8. I was on bed rest and on meds(Brethine Pump and Magnesium sulfate) throught most of my pregnancy. my 8 year old was just diag. w. dixelia .Does any one know if the meds I was on could given her dixelia?? Please email me.
Im sorry Dyslexia
Hi ladies,
I was on trabutaline with both of my boys for 3 months each for preterm labor. Prior to them I did have a premature baby girl that was very small but otherwise health and no long lasting effect to being delivered early. She was only 4 1/2 pounds at birth.
My boys on the other hand both have had sever learning disabilities, developmental delays, ADHD, and aspergers.
It has been a complete fight to educate them. My oldest son is 20 now and is still struggling to finish school. The learning process is very slow and grewling for them both. My youngest son is now 14 and just today he was diagnosed with ADHD and Aspergers. I also was informed today that there is a federal warning against giving terbutaline to control premature labor.
I am very disturbed by this. As I was not informed that this drug was not approved for preterm labor but for asthma.
I have been through hell over the past 20 years with wondering what/why my boys have such problems. Wondering if it was something that I did. Wondering how I can help them best. I have thought for many years that this drug had a big part in it.
My youngest son could not even ride a bike until he was 12. I am still fighting with the schools to educate him. They just keep bounching him around like a yoyo not really helping him at all. He just seem to be melting into the wood work and going completely un-noticed because he really does not say much and tries not to call attention to him self.
Not really sure where to go from here but I really need answers.
Thanks for Listening
Tanya
I am now 38 1/2 weeks pregnant, at 34 weeks I was given terb to stop preterm labor because they were worried his lungs were not developed enough. The nurses told me they were going to give me terb, before they did I asked them if it would cause any problems to my baby. They said no, but it could cause me to feel jittery and an increased heart rate. It didnt cause that with me, infact I felt sick and woke up with a rash under my eye. I looked it up and found out that infact it can cause problem with your baby and yourself. I am SO heart brooken that I was lied to. I am also very worried that my unborn child could have difficulties later in life. I am so worried and stressed out right now. I was only given it once and threw IV. Please e mail me back if any one has had the same problem or reaction.
Shaide
In 1996 I was given Terbutaline via pump for 6 weeks for pre term labor along with steroids for their lung development. I have twin 15 year olds with multiple challenges. One with Hypothyroid and hearing dips, ADHD alongside Cerebral Palsy and the other with now two hearing aides and hypothyroidism. I always had a feeling that drug – that pump, the feelings I had on it..heart racing and my voice trembling was something good for the moment but what would it be long term. This is not surprising but so sad. Years later to read all these stories, side effects and challenges spread to so many. I just need to think this through – it is a sad reality. Just reading this now some 15 years later………
I have a son who just turned 15 as was just diagnosed with Expressive Language Disorder. I noticed things with my son at age 5 and have been telling the schools that there was something different about my son – specifically that he didn’t seem to be able to express his feelings….he seemed to shut down when I talked to him. Especially if I asked a lot of questions or a lot of words. In 4th grade I noticed that my son had a major comprehension issue at brought it to the school’s attention, but they did nothing. He struggled to pass the 4th grade (and every year thereafter) In 5th grade my son started to shrink back from life and began having major panic attacks. He was diagnosed with GAD (general anxiety disorder). By the time he was in middle school he began asking me to write things down and he would write back to me. Then it morphed into texting. My son only uses very short sentences (3-4 words). He was just diagnosed with Expressive Language Disorder (after fighting with the school for 5 years – they finally tested him). NOTE: They were just lableing him a bahaviorial issue.
I went into labor with him at 34 weeks and was given Tribudaline. He was born 2 weeks early.
We have no history of Expressive Language Disorder in our family. Furthermore, the more I am talking to people about my son’s behavior I have been told to have him checked for autism spectrum disorder.