Page 1 of 2

Long term affects of zofran on child development and Autism

PostPosted: Sep 24, 2007 1:59 pm
by Night_Lily
I had HG with both of my children. The first was plagued by uninformed doctors and uninformed me! I was only on zofran for the last month of the pregnancy(after having lost 50lbs). My 2nd child I found a doc that knew about HG and was proactive in its treatment. I went on zofran at the first signs of HG and remained on it the entire 9 months(only lost 15 lbs).

My first child is very smart, has met every development milestone very early. My 2nd child, now 12 months old, is very behind developmentally. My doctor suspects Autism. We are currently in the process of diagnosing the cause of his sever delays.

So here is what I would like to know. Is there a link between HG and Autism or other developmental delays? And/or Is there a link between long term use of Zofran while prego and later developmental delays and/or Autism in the babys?


I have posted this under two categories since, really, it fits into both. I would really like to see a website front page poll on the long term affects of HG and Zofran on the children.

Thank you,
Mary

PostPosted: Sep 24, 2007 2:47 pm
by Atsie
I know we have a few children with Autism or who are on the spectrem on the boards. But the incidence doesn't seem high enough to me to suggest a link.

I was on Zofran(start to finish) with my 8 month old. She is not delayed at all so far. She is walking, says MaMa and BaBa for me and her bottle.

PostPosted: Sep 24, 2007 4:06 pm
by mammaclare
I also know that while Zofran is still not "officially" indicated for HG, it is very widely used and Motherisk, which is the utmost authority on drug safety in pregnancy, has it as safe drug and the FDA in the US has it as a Class B (while other more common agents like phenergan are actually Class C, one "safety class" lower technically).

In all my own reading, I've never come across a single thing indicating any linkage between Zofran usage and developmental delays at all, nor have I heard of any suspicion therein during my 4+ years here and our former site...so based on that, I can't say I would see any reason to believe any links at all.

I can completely empathize with how much a momma must want to find a root cause of any problem with their babies--be those problems physical or developmental. It must be terrible not having some answers as to WHY some thing happen to your child and not someone else's. However, I don't believe Zofran is, or will be, your answer.

As far as the suggestion of making the poll a "front page" one, I hesitate to suggest, as a Moderator, to make it such and here is why: Many of us are already so concerned with our babies' health already when we have HG...both from our horrendous nutrition, dehydration, and the many drugs we try and take for long periods. I really don't think adding a potential fear to the mix, that is so far pretty unfounded in the literature, would be healthy for new moms coming here trying to find help for their HG...especially if they are in the middle of a crisis situation. I don't want to put an idea in someone's head that may cause them to decline what we know to be the best currently existing option for most HGers. That is my personal take, however, so I'll be interested and happy to hear how other "veterans" here weigh in on your idea.

I am so sorry you had to do the first time so undermanaged...that stinks.

Oh--and as for my own answer to your questions... I have two Zofran babies...Rory was 7 weeks to delivery and Kieran was 5 weeks to delivery. Rory is very bright and Kieran appears so, but at 9 mos I won't say much since he is too early to peg for delays like PDD or autism spectrum.

PostPosted: Sep 24, 2007 4:18 pm
by Atsie
I agree with Clare, although I think that the poll would be interesting, I think that is would possibly do more harm for the first time moms. I do know, that mother risk does study the meds in pg. I was part of a study and they will have info from Camerons Dr on her health after an HG med filled pg.

PostPosted: Sep 24, 2007 4:29 pm
by peanut
I have two HG babies. My ds who I was mismanged with and was on Phenergan throughout the pregnancy from week 10 on has speech delays. He is 5. My daughter, through her pregnancy I was on Zofran, phenergan, and reglan, does not have any delays so far. She is almost 10 months old and she is babbling more that my ds ever did. She also says mama, dada, nana, baba all appropriately, and has been since she was about 6 months old (if not a little earlier).

I would also hesitate to put the poll on the front page and this is why:

1. It would not be scientifically sound, because for that it would need guidlines, access to charts, ect. So even if it is done on then it is only a VERY informal medicine study - it is much better to go by FDA studies that have a control and such.

2. It could give people another fear to worry about that is as yet not based in an facts. Also it would give those who do not really research the meds the ammunition to try to convince us NOT to use them (or cracker us).

3. It does not take into account those of us who have children with delays that never used zofran during there pregnancy.

4. As far as I know, there is not a "cause" as of yet found for autism. If it only occurred in people who had zofran, I may see the link. However, until they find the "cause" in "normal" pregnancies and conditions then I think it will be difficult to prove that zofran could be a cause.

:hugs: Hugs to to for the difficulties that you have and the mommy guilt - just remember people who had :fluffy: pregnancies also have kids with autism sometimes.

PostPosted: Sep 24, 2007 7:10 pm
by Night_Lily
Yes, I am on a quest to find the cause of my babys delays. I am/ will be investigating every conceivable possibility. HG and Zofran included. And I will not rule anything out til it is medically proven to not cause developmental problems.

I have to say that I did expect some back lash. I know the miracles zofran can preform first hand. And honestly I hope and pray that it is not a factor in my sons problems. However like all meds that make it to market most of the side effects come out after someone, somewhere, put two and two together. Or people start dying, like vioxx. And like what has been said, zofran has not been clinically trailed with pregnant women, much less followed the development of resulting babies. So no one knows for sure if it does or does not have any long term affects on the babies. And I do think a informal study would yield some answers. It would either show that the rate of developmental problems is in line with the national average, lower than the average or higher than the national average. If it does turn out to be higher, if it is a significant amount, that would warrant further investigation. But we ( I ) will never have any idea if the question is not asked.

I would like to point this out: this forum has 2439 members. 1 out of every 150 births in America will be an Autistic child. Statistically there should be at least 15 moms who have Autistic children. If you search the forum for autism over 180 post are returned. I have read most of them. And from what I can see there are many more than 15 different users who have a child with autism or other developmental issues. And let me point out that just as with the vaccines that contain thimerosal not every child injected developed autism. Only the ones who were more susceptible to heavy metal poisoning. Just because every women who has HG or took zofran while pregnant does not have an autistic child, does not mean one or both does not cause it.

I understand every ones reasoning for not wanting a front page poll. I would not want to scare off anyone that is suffering from help. But I do truly think this question needs to be asked. If there is a link women should know. If there is not a link then mothers will have one less worry. Ignorance is not bliss when it comes to any child's health.

PostPosted: Sep 24, 2007 7:52 pm
by IslandDreamer
Hi Night Lily,

I'm sorry your second child is struggling.

My experience and reading have indicated that the more poorly (un) treated HG pregnancies tend to be the ones where children have neurobehaviorial issues, not the medicated ones. The HER survey indicates a 7 fold increase in neurobehavioral issues (autism spectrum, ocd, sid, odd, etc.), which I see as related to the dehydration and malnourishment during the critical weeks of neuro development in first tri. That's why we need this genetic research being done at USC to help establish further parameters for study.

Does that mean Zofran can't create issues? Nope. Just never seen a direct link in my time here...doesn't mean there aren't any, just that I wasn't aware.

So far, no autism spectrum issues with my Zofran baby, but I'm seeing some OCD type behaviors emerging :roll: that will be fun if it's the case. :hugs:

Hoping you find answers.

Love,
Suzanne

PostPosted: Sep 24, 2007 7:56 pm
by aaronsmommy
The larger surveys that the HER foundation has done have attempted to investigate effects of both medications and hg on our children (they asked questions about every medication and treatment used and details about weight loss and hospitalizations). The pattern that the foundation has found in these surveys is actually that the malnutrition associated with untreated, undertreated, or more severe hg may be associated with neurodevelopmental issues. There has been a study initiated to investigate the possibility of this link, but, like most research, it has been slow to get started and will still be a long time before results are available.

Motherisk and others are continuing to look at the safety of medications for hg in pregnancy, and I certainly agree with you that there is not enough information to say that the medications have no risk, and it is too early to call off the research in to safety, although there is a lot of research that suggests that they are much safer than the alternative of no medications.

In terms of the anecdotal evidence from the forums, of the board members/posters that I know of who have children with neurodevelopmental issues, while I am sure that some did use zofran, many are from the untreated hg pregnancy, and a few are even from unaffected pregnancies, or even stepchildren.

As for my own vote in the poll - no developmental issues and high doses of zofran from 6 weeks to delivery.

PostPosted: Sep 24, 2007 10:17 pm
by Cin
zofran has not been clinically trailed with pregnant women,


*dons health reporter hat*

Almost no drugs have been clinically trialed with pg women, because to do so is considered highly unethical. After all, what if the test subjects end up with birth defects?

But it is NOT true that Zofran's effects on babies are not being monitored. Motherrisk, out of Toronto's Hospital for Sick Children, is monitoring that right now, and has been for a few years. So far, no connection to any problems has been discovered.

Go check it out: www.motherisk.org

As for the autism stuff on the site, please be aware that at least two posters on the site have STEPchildren on the autism spectrum, and post about them frequently.

*takes off reporter hat*

Welcome to HER, Night Lily, and so sorry about your baby's issues. Although we may not see eye to eye with you on this issue, please know we are very glad you've joined us. Women who've survived HG are sisters. Even sisters disagree sometimes.

:hugs: :hugs:

PostPosted: Sep 24, 2007 11:09 pm
by bibliojo
Welcome to our forums Mary!

In answer to your question... I have two children from two HG pregnancies. My first HG pregnancy was poorly managed because my family doctor had no experience such severe HG. I did not take Zofran with my first pregnancy. But my son has issues. He had a speech delay and has behavioural problems and was tested for autism. It was negative but we kept searching for answers. Three months ago we finally got a diagnosis - he has Sensory Integration Disorder.

My second HG pregnancy was much better managed. I was able to get Zofran (it is a struggle to get this drug in Canada for treatment of HG) I was on Zofran for just over 4 months. My daughter has shown no signs of delays. She in fact is much more engaging than our son was at this age (almost a year)

I too wish there were more studies done on the medications we take but realistically very few do studies on pregnant women just because of the risk they open themselves up to. I, like Erin (Atsie), took part in a study that Motherisk did on Diclectin. I knew I was going to have another baby so why not use my experience to further research? However, I tend to be more of the mind (like the couple of other members that have already posted as such) that it is not so much medications but rather the malnutrition and stress that our bodies go through with an HG pregnancy.

I'm sorry that you are facing a possible autism diagnosis. Have you got yourself on a waiting list to be assessed? Although I don't know if they test them that early but there are always months and months of waiting for this and then waiting for that. What kind of delays are you worried about?

PostPosted: Sep 25, 2007 12:29 am
by Night_Lily
Thank you for all the warm welcomes. I have been regularly visiting helpher for 5 years now. I've read a lot of post on the forum, just have not posted myself. I actually credit helpher with saving my first child's life. My doctor had recommended abortion if i could not handle a little morning sickness. It was my mother who was reading one of my many discharge instructions from the ER that saw something she had never heard of Diagnosis: Hyperemesis. A google search brought up helpher. Reading the site was like having a revelation. "IT'S NOT IN MY HEAD!" lol

I haven't post my story because I'm still very much affected by the whole thing. Every time I come to the Helpher website i burst into tears within minutes. I'm just not over it, yet. Even though its been five years.

As for my son. He does show some of the red flags for autism and yet does not have others. He is 12 months old. He does not talk, pull himself into a standing position, point with his finger, use the pincher grasp with his fingers, he does not try to play with me, or get my attention to show me something, he does not play with toys (just mouths them and picks em up and drops them), he will only look at me if i say his name about 20 times. He didn't sit unassisted until he was 8 months old. He did not crawl until he was 10.5 months old. He does however love to play peek a boo, he is a big flirt and smiles at everyone, he laughs and will look at something if i direct him to do so. Oh he started doing "hand washing" at 2 months old. I thought he just discovered his hand. Then i thought maybe he was learning to wave or amusing himself. But now I know thats one of the biggest red flags.

We have contacted the agency in our area that does the testing. There is not a waiting list here. They are coming to our home next week. I've had his heavy metal levels checked, his vitamin and mineral levels, his food allergens. He's health as a horse! We have no family history of autism or any disabilities(other than HG). So now I'm focusing on medications and household chemicals. I am scrutinizing every medication that he or I have consumed from conception to present day. Luckily thats a short list for us. I do not like medications so, try everything to avoid them.

I am having a hard time with this but, only because I'm a "in the know" kinda person. I have to know the what, when, why, how, and where of everything. lol. So facing something like autism is hard for me. But I will not give up. I will spend the rest of my life trying to find the why and how of whatever he is diagnosed with. Because once you know the answer to those the "help" is mush easier to figure out. And no matter what happens if I can help just one other child not face what my angel is up against then its all worth it.

PostPosted: Sep 25, 2007 6:25 am
by Atsie
That is wonderful that there is no waiting list! The earlier the diagnosis, the better it is. If your son does have Autism, he is so lucky to have such a proactive Mom. Early intervention has changed the face of Autism.

Good luck next week with your appointment. Please let us know how it goes.
:hugs:

PostPosted: Sep 25, 2007 9:55 am
by TwoIsEnough
Just like you mentioned that you are a mother who has to know the who, what, when, why and everything you possibly can...I am the same. I often get myself into trouble by analyzing everything. I am a mother of two daughters, both hg pregnancies, both treated with a variety of meds including zofran from about week 5 until delivery, both premature. My oldest daughter is actually advanced for her age (not just a mommy brag but mentioned by the doctor and preschool teachers). She was never developmentally behind even with zofran and prematurity. My youngest daughter was also exposed to zofran the entire pregnancy and was premature. She is still young, and shows some slight delays at this point which the doctor states are strictly related to prematurity and her extended stay in the NICU. She is doing all the things that a baby 5-6 weeks younger than her should be doing.
Without zofran, I wouldn't have made it through my pgs, and I strongly believe that my daughters would not have either, especially my youngest.
I am sorry to hear about your little one and the concerns regarding autism. As mentioned, please let us know about your appointment. :hugs:

PostPosted: Sep 25, 2007 11:15 am
by nomore
To answer the original question, I have 2 live children whom I took large quanities of zofran when pregnant. My oldest is going to be 5 in Feb. She is exceptionally bright, she is not developmentally delayed at all, in fact, she has always been much ahead of where she was "supposed to be". She does have mild sensory issues, but, that IS hereditary and I, along with my brother and father also have mild issues as well.

My youngest is 21 months. She does appear to have some speech delays. However, she was premature, and has an older sister who doesnt shut up, so she has no real reason to talk most of the time :wink: . This has been discussed with her Pedi on many occasions, and if she still isnt talking well on her 2nd bday, we will have another hearing test done, and have her evualted by birth to 3. She is however, smart as a whip and understands everything to you say to her. She shows no signs of autism.

I truly understand your desire to figure out if there is a link to zofran causing this, howerver, in my honest opinion, having been one of the oldest members of this site, who is on here nearly daily, I would venture to say there doesnt appear to be a direct link. There are some women who have autisitic children, but, not all are biological, not all took zofran, etc etc etc. Also, motherisk has been studying zofran and other medications in pregnancy, and they have not to my knowlegde found a link.

Im so sorry you are dealing with this. :hugs:

PostPosted: Sep 25, 2007 12:33 pm
by teddi
I have taken Zofran alot during both of my pregnancies. None of my children has Autism. I had concerns about one of my twins starting about age 11 months. I knew something was amiss. She hit her milestones w/in "normal limit" but always behind her identical twin. She had been very personalble and very much into looking at ppl's & having their attention and smiling. Then she became much more focused on things (would play w/a string from my shirt for up to 45 mins nonstop) and much less engaging.

Some of the issues I was seeing (and was wondering about aspergers/austism) are likely attributable to the fact, that finally this year, she was Dx as having congenital spastic hemiparesis. For her is a mild, right side only form of Cerebral Palsy.

I would strongly suggest you visit a pediatric neurologist if you haven't yet. And if there is talk of MRI, while you have to weight the risks v benefits (they have to be done under sedation), I don't regret our decision to do it. We were able to confirm the Drs working diagnosis and see the actual damage on my daughter's brain from a stroke - presumably one before she was born. The slight paralysis she experiences affects of course the way she interacts and her perceptions of the world around her, which explains some of the behavior I see. I'm not 100% sure I have a full understand (or her Drs) yet, but I've gotten a clear answer that she's not Autistic.

Incidentally- my first pediatrician never caught the hemiparesis at all. Despite me bring up my concerns 3 times over the course of a year and half. A 2nd opinion (if you haven't gotten one) couldn't hurt.

PostPosted: Sep 25, 2007 1:00 pm
by JennyK
Autism scares me because we still don't know what causes it or why it is on the rise. I worried when my son didn't engage or smile much at 3 months, but thankfully he was just a slow starter. Even when I feared he might be autistic I was more suspicous of my malnutrition during pregnancy than the medications, which included high doses of zofran. I'd be searching high and low for answers, just like you are. I hope you get some.

PostPosted: Sep 25, 2007 2:19 pm
by caleighbelle47
My son has multiple delays, he didn't do anything on time (except for walking) but he was born prematurely and very sick as an infant. I believe his delays are caused by that, not the meds during pregnancy. I did question him being on the autism spectrum at a time but since no longer question that as he's progressed recently. I took phenergan the whole time but not Zofran. Like Jenny my first thought is that malnutrition has more to do with it than the meds if there is a connection.

I also took phenergan all throughout my first pregnancy and my daughter did not have any physical delays. Both of my kids have a speech delays but so did my husband and his mother did not have hg.

PostPosted: Sep 25, 2007 2:36 pm
by Natalie
I pm'd you

Natalie, x

PostPosted: Sep 25, 2007 11:14 pm
by bibliojo
Mary, have you had his hearing tested? That was one of the first things they did with my son as he too often tunes out and you can call and call him but he doesn't respond. I'm glad you don't have a waiting list to get seen but I'm unsure if they can provide you with an accurate diagnosis at 12 months. They may give you some possiblities as to what it might be and just say keep an eye on this and this and then see us again in 6 months or whenever. Just wanted to tell you that in case you get your hopes up for some answers when there may not be any answers given. I had that happen to me a couple times.

And I was also going to suggest is there any support groups in your area that you could connect with? I was able to connect with other parents of kids with Sensory Integration Disorder through the help of our child psychologist (they actually ran a mini-class on the disorder) and it was so very nice to meet other parents who shared the similar challenges to me and who could offer ideas that worked for them.

Do keep us posted on the outcome of your appt. I would be very interested to learn what you find out.

PostPosted: Sep 26, 2007 1:22 pm
by sarahkate
I am sorry you have these struggles with your son, Mary. I think we can all very much empathise with your quest for answers.

I think using the site for looking at the number of babies with any given problem is never going to be accurate, though. My daughter has met most of her milestones ahead of her real life peers, whether you look at it either through toddler groups or developmental charts. However, compared to the other babies on here, she lags well behind. One could assume that HG, or Zofran even, produces babies that are developmentally more able. But it is likely that the true picture is that there is some sort of self selection, or a reporting bias. I can only imagine the same is true for autism, or any sort of developmental delay.

Sarah x