Children with Fetal Anti-Convulsant Syndrome

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Aodan

New
Messages
17
Reaction score
0
Points
0
Hi everyone, I'm new and love your site!
I'm looking to contact parents with kids who have Fetal anti-convulsant syndrome. I would love to have other parents to talk to who are in the same boat as myself. There are many parents in the UK who've been supporting each other for so long (prior to the law suit). They have a wonderful support group, Janet Williams is terrific, but they're focusing on staying within the UK. We need to support each other here.
My son is 10yrs old, with Valproic Acid Embryopathy. He has brain damage, an IQ of 56, Optic Nerve Hypoplasia in both eyes, a hearing impairment, autism, a severe speech delay, other things, and a seriously fantastic sense of humor and laugh.
During my pregnancy I took 3,750mg 2x/dy. Also 5mg of Folic acid and prenatal vits. I listened to my dr's every word's even when I had doubt. I had a neurologist who "apparently" was "the" specialist in pregnant woman with seizures. I also had a Perinatologist who "apparently" was "the" best in the biz. Well so much for that!!
 
My daughter was born with FACS. She was 4 lbs 5 oz at 37 wks and had numerous medical probs when she was in the NICU for 9 wks.
She is developmentally delayed and is very small for her age. (4 1/2 yrs) She didn't walk till she was 3 when her PT prescribed leg braces for her, (she drug her toes when she walked - an obvious neurological delay) and still only talks in 2-3 word sentences.

What does ONH look like? My daughters eyes don't always follow the other and I've been wondering if it could be because of the FAC.

During my pgncy, I took 1000mg of Depakote ER 2x's a day along with 10 mg of folic acid. I was told by my neurologist, (after my daughter was born,) that he had never heard of it. He's been a neuro for 30+ yrs and never heard of it. What a LIAR!
 
Hi Junebug,
It's soooo nice to talk to someone in the US who knows what its like living with a child with FAS. I can finally sigh in relief.
My son was born at 37wks also, we were able to take him home as the dr had been pumping Vit K or A(?) into him for lung development. He had to eat thru a syringe and tube because his hypotonia won't let him latch on. It took quite a while but we got him onto a preemie bottle but he couldn't take anymore than 10cc which had to be given every ten minutes 24/7. Sleeping wasn't an option. To date he still only sleeps for 2hrs at a time. We're thrilled if he sleeps for 3 :)
Was your daughter diagnosed with hypotonia (loose ligaments/weak muscles) since she had to walk with braces? My son also had to walk with braces. He couldn't crawl until 21mos, and was walking at 22mos. Dr'd told us due to the hypotonia he'd never walk or be toilet trained. My thought was "you can't tell me these kinds of things". It took 2 1/2 yrs but my son was fully toilet trained. Mind you when my daughter came along I dreaded toilet training...she took 3dys...I couldn't believe it!
I think if your daughter is speaking in 2-3 word sentences at 4 1/2 thats super!!! My son wasn't speaking then. He didn't use 2-3 words until 6 yrs old. He's 10 now and "can" use full sentences if pushed to. For example if he wants something to eat and just says 1-2 words, we tell him he has to use a full sentence. Mind you, FAS or not, at 10 we sometimes still get the "oh" and the eye roll, already.
ONH looks like they need glasses. They get closer to things-games, toys, movies. My son wasn't diagnosed however until he was 9 (he'll be 11 soon) He's been having his eyes tested since he was little and they all told us his eyes were perfect, however none of the dr's were special needs eye dr's,we couldn't find one. Finally we found a fellow at UCLA who the Chief of Opthamology, and specializes in special needs kids. He told us Aodan had ONH in both eyes and normally its only in one. Has your eye dr checked your daughter for Strabismus, sometimes that has to do with eye tracking. I try to read alot about FAS and I know it can affect their eyes.
Did your neuro ever tell you at what dosage Depakote becomes toxic? Mine didn't. Even when I asked if the baby could be toxic because of my high dose. I kept getting "everythings fine" or the brush off.
As I find out more and more info on FAS, and I think back to the lack of information I was given. The lies I was fed, and I can't forget the years of the "free" (at what cost) med samples shoved on me by the dr; from "the pharmaceutical co's"-oh I can say kickbacks. It just irks me, that my little boy, who I can hear laughing right now, has to pay the price for their greediness and lies.
 
My daughter Dakota, ended up having to have a feeding tube for almost 3 yrs.
The sphincter/muscle at the bottome of her esophagus was too weak and she would need O2 after about 30-45 min after they would feed her through a feeding tube in her nose. She also had a high and soft palatte in her mouth and couldn't swallow.

Dakota is getting daily developmental therapy and is in a develop. pre-school. She has a lot of peer interaction and has received speech and occupational therapy and is doing very well, especially her OT.
Her hands are so small, (about the size of a 1 yr old,) and she shouldn't be able to cut, draw, write or even open doors but she is! YAY!

Is your son right or left handed, or both? Dakota writes/draws with both and has a perfect pencil grasp with both hands, even better than her 7 yr old sister!
 
not a parent but have a question

Hi Ladies: I am a woman with Epilepsy in my thirties and would like to have children within the next few years. I've noticed trying to get reliable/consistent information about pregnancy and conception with Epilepsy just varies depending on the Dr. you go to how their feeling that day etc. So, my ignorant question to you since obviously you've been where I pray to be some day soon is does FACS occur because of certain AED's we've been prescribed or is it a combination of AED's/diet, is it random. My ex and I use to talk about children quite a bit and he seemed more concerned than me about possible birth/pregnancy complications during the ladder years of our relationship (now i'm thinking maybe some of his concerns may have been valid).
 
Hi Ladies: I am a woman with Epilepsy in my thirties and would like to have children within the next few years. I've noticed trying to get reliable/consistent information about pregnancy and conception with Epilepsy just varies depending on the Dr. you go to how their feeling that day etc. So, my ignorant question to you since obviously you've been where I pray to be some day soon is does FACS occur because of certain AED's we've been prescribed or is it a combination of AED's/diet, is it random. My ex and I use to talk about children quite a bit and he seemed more concerned than me about possible birth/pregnancy complications during the ladder years of our relationship (now i'm thinking maybe some of his concerns may have been valid).

I've had 2 pregnancies while on Depakote ER. My oldest daughter was fine but my youngest daughter was born with FACS.
There are many complications in pregnancy that are effected by taking AED's. For one, while taking Depakote my girls were both small for gesational age. 1st daughter was 4lbs 15 oz at 37 wks and 2nd daughter was 4 lbs 5 oz at 37 wks. Adjusted gestational age was at 34 wks and 33 wks.
Depakote is known to cause birth defects such as Spina Bifida and Cleft Lip and Pallate. Also in-utero it can and ofter does cause the baby to grow slower, (Intra-uterine growth retardation, IUGR) such as my girls.

There are many drugs out there that are MUCH safer than Depakote.

The prob with my dr at the time is that he KNEW that my husband and I were planning on havving another, he (my husband) went to the office with me and we both told him that I needed to be on the safest drug allowed for a woman with epilepsy throughout her pregnancy. He took me off felbatol and put me on Lamictal because it is safer than Felbatol. What about the Depakote? He changed me to Depakote ER from plain ol Depakote, which is what I was taking when preg. with my first daughter.

From my experience, dr's don't tell their patients everything that they know. I've had 6 different neurologists and have just now found the dr I will keep. He is the only person who really talks to me and listens to my questions and concerns and supports me in the medical decisions that I make.

My old dr (who was my dr that told me Depakote was 'safe') would only meet with me for no more than 10 min. My dr now will sit and talk with me for over an hour if I need him to. He's so passionate about neurology and I love that in a dr. Alot of dr's read about each and every medical conference they should have gone to, but my dr goes to every conference that he can because he wants to help people with Epilipsy, not just because he wants to, he feels it is an obligation to his patients.


For the record, my husband and I have decided not to have any more children because of the complications I had in my pregncy. It's just too dangerous for a woman with toxemia 2 times, and retaining over 20 lbs of water throughout my 2nd preg. Bed rest (both times with my daughters,) is not something that I could handle with another child on the way.
 
Hi,
I'm won't usually be on during the weekend and the kids were off school yesterday.

Wow, 3yrs, the poor wee thing. Is she ok now? You are a super-star my lady! Are you alone during all of this or do you have any help-nurses, Regional Center?

When do they start Kindergarten there? Here(CA) I have recently found out (too late of course) they have the option of holding kids back until they are six and letting them stay in preschool since so many of them these days do a lot of "K" stuff. Do they have the same quality of OT, PT, & Speech in the school districts (K & up) there as they do prior to school years? Here they definitely DON"T. You get into the IEP's and the school districts talk about the "overloads" of their kids they have to service, and services seem to take forever or are not very good. The worst we've come across is the speech services. We even had my 8yr old daughter (she has speech too) come home one day and tell us they watched a movie in speech. I was shocked. She told me her speech teacher told them it had "speech" in it!!

Don't you just love when the dr's tell you your child won't be able to do this that or the next thing. I wonder if they go home eat night with a clear conscience? Probably. I am so happy that Dakota is able to cut, draw and open doors. These things seem so small to some parents, but we feel they are huge achievements. Aodan is only now starting to use a fork about 75% of the time. I think he still finds it easier to just use his fingers, but knows how much John and I want him to use a fork. Knives are still way out of the question. He thinks they're Star Wars sabers-"I think NOT"! LOL

Aodan used to use both hands, but over the years school has emphasized the righthandedness. His grip is ok, but he has small hands for his age too-actually he's very small generally-but with his hypotonia and double joints his writing is not good. The double joints are from his dad-lots of fun at parties (in your 20's) but not with hypotonia.

Does Dakota have an Endocrynologist? I've read these studies recently saying they've found possible problems(?) with the pituitary glands that can cause Dwarfism. With all the other things Depakote causes its just one more thing to add to the pot.

My main question however is...
If mouse studies don't justify problems with meds how can they justify FDA approval as safe.
 
Hi,
Do you have problems with PICA, or know anything about it?
They eat non-edible objects?
 
At one

point, I wondered if my youngest son had this.....but he was never diagnosed with it. He was Failure to Thrive for a while, and was supposed to be a vegetable. They (doctors) thought he would have cerebral palsy and cystic fibrosis. He is 90% deaf in one ear now, and 70% in the other. But that is the result of many ear infections, and surgeries.

He has gone thru many types of therapy, and had no muscle tone of any sort until he was 10 months old.

However, he was 7 lbs, 5 oz at birth, and 9 days late, so I don't think he fits the criteria either way.......

He is now listed as PDDNOS, although he should have be classified as Asperger's, but the hearing issues prevented that.
 
joined the party

I totally agree that reliable info, especially from dr's, is like trying to win a lottery.
I've had 4 preg. on Depakote(Valproic Acid). It wasn't until last year that I found out that Dep. could very well have caused the 2 Ectopic and 1 Blyted Ovam.

My 4th preg was with my son, who is wonderful and I wouldn't trade for all the other children in the world.

Compared to the first three preg. I was happy because it went full term but it was far from "fab". Lots of bed rest, fluid retention from about 8wks, I gained probably 100lbs (they had to stop weighing me as I wouldn't fit on the scale without toppling forward)-that part is funny NOW. I only felt Aodan move once throughout the whole preg.-stress tests twice a wk and they couldn't get him to move. Ultra sounds 2xs/wk, 6amnios-one drew blood. My fluid was dangerously low, hypertension, there was some placenta problems at the end that they refused to tell me about. They did a C-section, which I was supposed to have an Epideral for-but the Neuro didn't show up for the delivery, so they put me under a general.
Afterwards they told me to pump(as Aodan couldn't eat on his own) and they did not inform me the Depakote goes thru to the milk.

Articles that I've read indicate FAS occurs "more often" with certain anti convulsants as opposed to others. Carbamazepine, and valproic acid are examples. They're even wondering about the link between Valproic Acid and Autism. I haven't read anything that says its AED/diet that is the cause. I was on the same diet with my daughter and my son-different drug(Topamax)-she has dyslexia, and some very slight hypotonia, which rhythmic gymnastics is handling.

I've heard they now have a test with the same options, (or screening or something) they can do at the same time they do the Downs screening during preg.

I admit its a difficult road sometimes, but the sound of my son's laughter or him coming and giving me a hug makes all those difficulties disappear. I read a poem one time that spoke about kids with special needs (in general). The just of it was; when you're preg its like planning a trip to Paris, but when you get off the plane you're in Italy, wonderful yes just not what you had expected.

There are a couple of places you might want to take a look at;
California Teratogen Information Service (CTIS)
We were involved in their study and have seen Dr Kenneth Lyon Jones as a private patient.
Organization of Teratology Information Specialists (OTIS)
You can get some good info by calling them. I know at CTIS you don't have to join their studies.
Good luck
Alison
 
point, I wondered if my youngest son had this.....but he was never diagnosed with it. He was Failure to Thrive for a while, and was supposed to be a vegetable. They (doctors) thought he would have cerebral palsy and cystic fibrosis. He is 90% deaf in one ear now, and 70% in the other. But that is the result of many ear infections, and surgeries.

He has gone thru many types of therapy, and had no muscle tone of any sort until he was 10 months old.

However, he was 7 lbs, 5 oz at birth, and 9 days late, so I don't think he fits the criteria either way.......

He is now listed as PDDNOS, although he should have be classified as Asperger's, but the hearing issues prevented that.
It was a VERY difficult diagnosis for us to verify. No one would confirm it until he was just past 8yrs.-just after the statute for malpractice runs out in CA.
Until 4 1/2 my son was severely hearing impaired in both ears and they said he'd go deaf. He now has only a slight hearing impairment in the R ear. He's had continual ear infections and many tube surgeries. At 4 1/2 we took him to see Dr Roy Weldon Muncy in Lancaster CA. He practices something called the Blair-Palmer Method HIO specific. We didn't know it was a type of chiropractic-I don't agree with chiropractic. We talked to Dr Muncy saw the set up. Dr Muncy is the type of man who couldn't care less about how the adults feel, "all they do is complain" he "likes to help the kids feel better". He's a delight after you get over the initial shock. A month later Aodan had his annual hearing test and they wanted to know "what we'd done" to
him. He had almost all his hearing back. We never would have believed it unless we'd lived it.
I don't know if there is a criteria. DOES ANYBODY ELSE? JUNEBUG?
Aodan couldn't sit at 10mos either. Still at 10yrs he's not strong at all, can't do stairs on his own, but does gymnastics and his favorite thing is the rings. He can't do them by himself but he loves them, and it scares the heck outa me.
He's listed as having high functioning Autism. Alot of articles/drs are thinking there might be a link between Valproic Acid and Autism.
We finally got a Dysmorphologist to diagnose the FAS.
Good Luck and come and visit us again
 
point, I wondered if my youngest son had this.....but he was never diagnosed with it. He was Failure to Thrive for a while, and was supposed to be a vegetable. They (doctors) thought he would have cerebral palsy and cystic fibrosis. He is 90% deaf in one ear now, and 70% in the other. But that is the result of many ear infections, and surgeries.

He has gone thru many types of therapy, and had no muscle tone of any sort until he was 10 months old.

However, he was 7 lbs, 5 oz at birth, and 9 days late, so I don't think he fits the criteria either way.......

He is now listed as PDDNOS, although he should have be classified as Asperger's, but the hearing issues prevented that.

I think that it would be a very good idea to have him checked for it again.
Dakota was diagnosed with it when she was a day old, only because my dr and the pediatrician knew about my Epilepsy.
The failure to thrive is a big issue for kids with FACS, Dakota will be 5 in Sept and she only weighs 30 lbs.

FACS can cause PPDNOS and Aspergers as well so that is another reason to get him checked out.
Other, more obvious symptoms/signs of FACS are small, stiff fingers, toes, facial abnormalities such as tiny ears that are off center of where they should be. Almond shaped eyes, no bridge on the nose, tiny/thin lips, soft/high pallate, toenail and finger nails that don't grow like normal childrens do, toes and fingers that are 'bent' because of the stiff joints, (Dakota's fingers didn't bend at the top joint like they should, low muscle tone.
I could go on and on about what the normal symptoms are with FACS, including develpomental delays.
Dakota had flunked 3 hearing tests before she came home from the NICU and got tubes in her ears. She'll need them again because they have fallen out or are stuck in her teeny tiny ear canal.

Dakota has had many hurdles to overcome and she has a strong will to succeed. She doesn't give up or try something different because she can't, she figures out a way to get past her 'obsticals' that keep her back.
 
Hi,
I'm won't usually be on during the weekend and the kids were off school yesterday.

Wow, 3yrs, the poor wee thing. Is she ok now? You are a super-star my lady! Are you alone during all of this or do you have any help-nurses, Regional Center?

When do they start Kindergarten there? Here(CA) I have recently found out (too late of course) they have the option of holding kids back until they are six and letting them stay in preschool since so many of them these days do a lot of "K" stuff. Do they have the same quality of OT, PT, & Speech in the school districts (K & up) there as they do prior to school years? Here they definitely DON"T. You get into the IEP's and the school districts talk about the "overloads" of their kids they have to service, and services seem to take forever or are not very good. The worst we've come across is the speech services. We even had my 8yr old daughter (she has speech too) come home one day and tell us they watched a movie in speech. I was shocked. She told me her speech teacher told them it had "speech" in it!!

Don't you just love when the dr's tell you your child won't be able to do this that or the next thing. I wonder if they go home eat night with a clear conscience? Probably. I am so happy that Dakota is able to cut, draw and open doors. These things seem so small to some parents, but we feel they are huge achievements. Aodan is only now starting to use a fork about 75% of the time. I think he still finds it easier to just use his fingers, but knows how much John and I want him to use a fork. Knives are still way out of the question. He thinks they're Star Wars sabers-"I think NOT"! LOL

Aodan used to use both hands, but over the years school has emphasized the righthandedness. His grip is ok, but he has small hands for his age too-actually he's very small generally-but with his hypotonia and double joints his writing is not good. The double joints are from his dad-lots of fun at parties (in your 20's) but not with hypotonia.

Does Dakota have an Endocrynologist? I've read these studies recently saying they've found possible problems(?) with the pituitary glands that can cause Dwarfism. With all the other things Depakote causes its just one more thing to add to the pot.

My main question however is...
If mouse studies don't justify problems with meds how can they justify FDA approval as safe.

Dakota had her feeding tube out last June and is doing great! She has gained 5 lbs since she stopped using the feeding tube, (they wanted her to gain weight and eat a before they took it out.) but had a OT who specialized in feedings. It took almost 3 yrs for Dakota to eat steadily but she did gain weight at a faster rate than before.

I had a lot of help from my husband and very lucky to find a babysitter at our church who had sat with another girl who also had a feeding tube so we didn't need to teach her how to feed her when she watched our girls.
My sister and my mom were a great resource too as they are both nurses and could translate the medical terminology that was used.

Dakota was also very anemic for about a year since the day she was born. She had to have light therapy for jaundice, (which isn't out of the ordinary for preemies/under weight babies,) and had low iron and had to have a blood transfusion at 5 wks.
She had a PDA (hole in her heart when she was born, again not uncommon for preemies/low birthweight babies,) and that was repaired at 2 1/2 weeks.

Kindergarten here starts at 5 but Dakota has a Sept bday so she will go another year in pre-school. Here they have a developmental pre-school through the school system and she has been there for two yrs now. She's had a HUGE improvement because of the peer interaction too. Everyone in my family, (extended family) could tell a big difference in her development after she started developmental pre-k. She knows and recognizes questions and will answer back appropratly.

We haven't been told about what an endocrinoligist could do for her but I will be taking her in to the ped today, (she's sick with a fever and possibly croup)

Does Aodan have a service co-ordinator? Dakota does and she has been a lifesaver! She gets things scheduled, IEP's, documentations, therapies, and makes sure that we are not overwhelmed by this.

Med labratory trials are something that I hate almost anything w/ being compared to a drug that is safe during pgncy. A lot of drugs are categorized in a class, such as class A, B, C or D and so on, when regarding what is safe during pgncy. I believe Depakote is a class D drug which means it has not been tested on preg. women with epilepsy, or hasn't had enough studies with it because it is considered 'rare' (1 in 250,000 babies are born w/ FACs to women with E.) but is not necessicarily tested for depakote. All AED's are tested and most pg mothers with E take multiple AED drugs so it isn't certain that Depakote is the main cause of FACS, but is obvious, just not obvious enough.

I really hate it when dr's tell me that kids with FACS will have a hard time doing things or won't be able to do them at all.
Dakota had a walker for about a year before she got her braces. Her PT and the orthitist both told me that rome wasn't built in a day so don't expect a miricle right away, it would prob take 4 or 5 mos before she is walking on her own.
dakota proved them both wrong and was walking by herself, w/out her walker TWO days after she got the braces! I called her orthitist and she let out a HUGE shout when I was on the phone with her. Her PT even took video of her walking a week after she got her braces.
I was crying tears of joy for weeks after she started to walk because she did it all on her own because of her strong will and determination.

I don't expect Dakota to be potty trained anytime soon, she has had only a few sucesses after a year but I could prob count those on two hands.

Dakota also has the giggles all the time and it is such a joy to hear her happiness and see those around her when she giggles. She fills the room with laughter and it makes my heart happy.
 
Ah, but

my youngest son is now 19. I believe it would be hard to check him for it now...
 
my youngest son is now 19. I believe it would be hard to check him for it now...
It's never too late!!
We knew when I was pregnant, but it took until he was 8 before the diagnosis was confirmed. This was at an appointment for something completely different. This Dr had no idea what we'd been through and when we told him "a bit" he laughed and said, it's so obvious, why would no one tell you. He sent us to a friend of his who said Aodan was the worst case of FAS he'd ever seen, which sent us home rather dis-heartened.
Prior to this we'd been told it was a genetic disorder-every available test came out normal. They told us it was a developmental delay. They said it was not on the ASD. Two years later this same geneticist participated in a school report (without our knowledge) saying Aodan had FAS.

My long-winded point is you know your child best. You know your thoughts and you know in your heart.
 
I think that it would be a very good idea to have him checked for it again.
Dakota was diagnosed with it when she was a day old, only because my dr and the pediatrician knew about my Epilepsy.
The failure to thrive is a big issue for kids with FACS, Dakota will be 5 in Sept and she only weighs 30 lbs.

FACS can cause PPDNOS and Aspergers as well so that is another reason to get him checked out.
Other, more obvious symptoms/signs of FACS are small, stiff fingers, toes, facial abnormalities such as tiny ears that are off center of where they should be. Almond shaped eyes, no bridge on the nose, tiny/thin lips, soft/high pallate, toenail and finger nails that don't grow like normal childrens do, toes and fingers that are 'bent' because of the stiff joints, (Dakota's fingers didn't bend at the top joint like they should, low muscle tone.
I could go on and on about what the normal symptoms are with FACS, including develpomental delays.
Dakota had flunked 3 hearing tests before she came home from the NICU and got tubes in her ears. She'll need them again because they have fallen out or are stuck in her teeny tiny ear canal.

Dakota has had many hurdles to overcome and she has a strong will to succeed. She doesn't give up or try something different because she can't, she figures out a way to get past her 'obsticals' that keep her back.
Hi Junebug,
You're very lucky you have so much help. My husband and I are alone here. My family is either in Canada or the UK. As for friends, we're so busy with the kids they're non-existent.
My husband and I haven't gone out together since Aodan was 4mos old. Because Aodan hasn't talked until very recently we couldn't find a sitter.

Is Junebug Dakota's nickname?

We found out about the endo. ourselves and then asked one of our drs who was very supportive of the idea. He gave us a name but as I said, nerves have prevailed. He said they are very good to be followed especially if on any kinds of meds, and they have alot of info other types of dr's don't.

Aodan does have a service co-or. but they really haven't been too much help. Here it depends alot on who you know and how much you donate. We've just gotten a line on a very good one and are trying to switch-supposedly she isn't interested in your "financial status" which very unfortunately is "mega" important in LA.

Dep. was a pregnancy category C in 97 (when I was preg) since then its been changed to pregnancy cat D.
Cat C animal studies show adverse effects, no adequate human studies showing adverse effect, but potential benefits may warrant use despite potential risks.
Cat D. Positive evidence of human fetal risk based on human studies, but potential benefits may warrant use despite potential risks. There have been so many human studies done -as far back as 82, clearly resulting in damages due to anti-convulsants-depakote being one of the worst offenders. Unfortunately they all hide behind the PDR and lawyers won't take them on due to the vagueness of the PDR. What have the UK lawyers got that ours don't? Do you know that the FDA told me that pharmacies are responsible for handing out the med. information inserts. I can't remember the last time I got one of those.

I found some old info from the FDA, and when I asked them 'if mouse studies don't justify problems with meds how can they justify FDA approval as safe. Or even safety to continue to human studies...The FDA had "no comment".

Junebug, when I read about Dakota walking by herself I started to cry.

Good luck with the potty training, its such a drag.
Take care :)
 
Hi Aodan, belated welcome to the forum. :hello:

... I'm looking to contact parents with kids who have Fetal anti-convulsant syndrome.

I applaud your initiative in trying to bring them together. I'll direct folks this way as I run across them. :)
 
Hello Aodan, and welcome. I too, had a child with a severe seizure disorder lonnngggg before anything was known about it. One thing I did learn with my daughter (unfortunately, I was a slow learner) is that I was blessed and she taught me tremendous lessons that are invaluable today. I'm so glad that medicine has advanced so much in the last 20 years where children are concerned. Take advantage of it and research (which I can see you have) and count everyday as a blessing. Prayers for you and your child, and your doctors. Again, welcome:hello:
 
Hello Aodan, and welcome. I too, had a child with a severe seizure disorder lonnngggg before anything was known about it. One thing I did learn with my daughter (unfortunately, I was a slow learner) is that I was blessed and she taught me tremendous lessons that are invaluable today. I'm so glad that medicine has advanced so much in the last 20 years where children are concerned. Take advantage of it and research (which I can see you have) and count everyday as a blessing. Prayers for you and your child, and your doctors. Again, welcome:hello:

Hi Rhea, was your daughter finally diagnosed with fetal anticonvulsant syndrome (FACS)?

My son doesn't have seizures luckily! Some kids with FACS do. This syndrome was caused by the Dr's putting me on toxic levels of Depakote, while I was pregnant with him. I've been researching this for "years"...

Aodan's an amazing young guy. We count our blessings every day.
 
Back
Top Bottom