high-dose folic acid - for whom?

[abbysmum]

I know that I will now need to take high-dose folic acid forever more, and the SB association here told me that applies to my sisters as well. One of my husband's sisters wondered if it was relevant to them too?

I spoke to a couple today (parents of a 6yo little boy with SB) & the dad told me he too was advised to take high-dose folic acid when planning their next baby, but his sisters were past childbearing at that point so he never told them.

Has anyone else been given this info? My SILs are all in child-bearing years so it's relevant. All the info I can find online says you should take it if you have an NTD, have a previous pregnancy with NTD or have a relative with NTD.

Many thanks!
Mama to Abby, expected mid-May with lumbo-sacral SB from about L4, talipes & hydrocephalus

[cutie patooties mom]

Every woman within childbearing age should take folic acid. However, taking it does not ensure a 100% guarantee that a neural tube defect will not occur.

[abbysmum]

I'm well aware of that & have been taking it for 10 years :) - I think I may have misphrased my question.

Now that I have had an NTD pregnancy (ongoing!), I will need to take at least 10x the normal amount of folic acid for the rest of my childbearing years, as will my sisters.

What about DH's sisters though? We're in a country with one of the highest incidences of NTDs in the world - is the 'sibling has a child with NTD' for sisters only or does it go through men too?

At least a few doctors are recommending that all females associated with either parent take the high-dose but I can't find much corroborating evidence. It's a bit vague.

As my DH has 4 sisters, this is important to us.

[LisaJoy]

I have read that men should take folic acid too, although I don't think there's as much evidence to support that as for women taking it (that is, in relation to sb; there is evidence that it protects against heart disease, too). There can be a genetic component to sb. Since it is possible that genetics has affected your pregnancy and there's no way to know for sure whether it comes through your family or your husband's, I'd say the safe thing would be for his sisters to take the higher dosage rather than the standard 400mcg. They should probably check with their own physicians to make sure there is no reason NOT to take the higher dose of folic acid (such as a potential drug interaction or some other reason ).

Some countries actually recommend a higher dosage as the standard rather than the 4mcg recommended in the US and I've read that some scientists think that 400mcg is not sufficient.

Of course, you (and they) should be aware that folic acid only prevents about 70% of occurrences of sb. About 30% of cases have no known origin.

I think I have the 400 mcg right as the standard; somebody check me on that. I'm thinking the high risk dose is 4 mg.

[Dodger67]

The simple answer to who should take the folate: All childbearing first to third degree relatives of the person who has the NTD. In the case of male relatives its obviously their wives/partners who must take it.
That includes ALL aunts!

Q: So who is a first degree relative?
A: Anyone with whom you share half your genes. Mother, father, son, daughter, brother, sister.

Q: Then who is a second degree relative?
A: Anyone with whom you share a quarter of your genes. Grandparent, grandchild, uncle, aunt. All the 1st deg relatives of your 1st deg relatives who are not also your own 1st deg relatives.

Q:That means third degree relatives are?
A: First cousins. (There are others of course: great-grandparents, etc. but they're not likely to get pregnant LOL!)

Now remember these are the person with the SB's relationships - not the mother's.

[abbysmum]

Thanks everyone. We'll be meeting with the aunties this afternoon :).

[liz08]

I would definitely advise the husband's sisters to make sure they are taking folic acid, and maybe instead of 400 mcg, to take 800 mcg (the recommended amount during pregnancy). I don't know if it would be necessary for them to also take 10x the normal amount...they would probably need to check with their own doctors about that. But I do know that my husband's father had a complication in his spine that doctors believe is very possibly due to inadequate folic acid on the part of his mother during pregnancy. Because of this, I was extra careful about making sure to take folic acid (http://www.seacoastvitamins.com/topic.php?health=folic+acid) for years prior to pregnancy, and then made sure to get plenty while pregnant. I definitely won't stop taking it until I'm sure I'm past childbearing. So I would say advise them to take it, but not necessarily the high dose you take. Also a good idea for them to speak with their own doctors.

[dsmith]

I was taking 800mcg of folic acid while attempting to get pregnant and during the pregnancy. Our daughter still had SB. We were told by the geneticist that due to both my husband and myself having Irish background, that I should have taken 10mg. The geneticist said that Ireland had a very large incidence of SB and then all childbearing women began to take 10mg of folic acid and cut the rate by 90%.

Of course I asked, why the recommended dosage is not 10mg instead of 400mcg and I was told that folic acid can mask anemia. And, for 80% of the population 400mcg is sufficient. If you are of Irish decent I recommend speaking with your doctor about the higher dosage.

[Barb]

Thanks Dodger for providing the right info that is given out there. There have been several studies done though that say it does not matter if you take 100 times the amount, some peoples bodies cannot process it.

I am so on the side that folic acid is a great pr campaign and that is it! I took twice the amount after having an ntd miscarriage and Carter still has spina bifida. I don't think any one will ever convince me that it really prevents ntd's and I personally hate the stigma it creates. "oh, poor mom didn't know if she only took folic acid she could have prevented this horrible tradegy". When C was younger I was really sensitive to that blame game.

That is why I still refuse to support sbaa. I truly feel that the money raised should be used to help people who have this, not spread disputed info.

[kidsrustx]

Should the wives of men with SB take the higher dose folic acid when trying to get pregnant?

[Dodger67]

Yes, the same 1st to 3rd degree relatedness rule applies to the wives of male relatives.
My brothers' and male cousins' wives all took higher doses of folic acid. No new cases in my family so far.

[abbysmum]

The geneticist said that Ireland had a very large incidence of SB and then all childbearing women began to take 10mg of folic acid and cut the rate by 90%.

I am Irish & would love to know where your geneticist got that impression! A recent study in one of Dublin's major maternity hospitals showed less than 30% of women were taking ANY folic acid preconceptually and 400micrograms remains the recommended dose.

[UpNorth]

I was told to just in case even though dh's Sb was supposedly caused by his mother's pneumonia with high fever in early pregnancy.

[Cubster]

I'm one of six kids. My brother John's first born was born with severe NTD, My brother Tim's first born was born with severe NTD and my first born has SBO. So far my second is clear and tests results are pending on youngest two. After John's son was born we were ALL told to go on 5mg of folic acid for the rest of our child bearing years. I had been on 5mg/day for at least months before conceiving Hannah. THANK GOD I did.

I know there are metabolic disorders such as MTHFR that prevent the metabolizing of folic acid. Gideon was tested for this as he's a stroke survivor and MTHFR can also cause clotting. He was neg. We're not sure if it's metabolic, genetic, or if it's just because we live in South Western Ontario, supposedly one of the highest NTD rates in the country. :S

I hope we'll get answers some day, until then, my kids are taking at least 5 mg of folic acid for all of their child bearing years.

[valerie]

Hiya, i was too told to take the high dose folic acid & anyone in my family & i would think my husbands side too as in the genetic councellor on fri she said the genes come from the two sides. she said for Trevor not to take it as it was the maternal side that carries the baby but on speaking to lady in the sb clinic she & her husband both took the folic acid with the rest of their pregnancies. it would be no harm & if it helps anybit, its worth it.

[Dodger67]

Its irrelevant for the father to take it.
BUT the partners of men with sb in the family should take it even if they have no history. The genetic factors in NTDs are poorly understood but it is very irresponsible to say only females carry the genes. In mammals there are NO genes exclusive to females.

[valerie]

i agree the genetic councellor last week told me thats its both parents carry the gene but the folic acid is for the maternal side as she is the one carrying the baby but a man taking it wouldnt do any harm.

[leigh828]

OK, folic acid can't hurt you...why all of the big dispute? All women of childen bearing age should take it, whether it helps or doesn't, what's the harm in just taking it? Take extra if you want! I too, was taking extra FA and my son has SB, but guess what? I'll be taking 4 mg a day just in case we decide to try for number 2! :)

[LisaJoy]

Leigh -- I've been following your blog for a while and just wanted to say that little Grey is gorgeous!

About folic acid -- it has cardiovascular benefits as well as being necessary for normal fetal development. However, ALL vitamins can be toxic at very high levels and some medications can intensify the effects of others, so folks should check with their pharmacist about appropriate high-dose folic acid intake, especially if you take other meds.

[leigh828]

Thanks Lisa!

I was told by my OB that whatever "extra" folic acid you have in your system you just pee out. He said that your body won't metabolize what you don't need. I would probably check with your doc before taking large doses (mine gave me a perscription). I guess what I was trying to get at is...tell EVERYONE to take extra, not just those that you think may need it. I never thought that I would need it, and I did.

[Papillon]

I know this is an old thread, but I was not a member on here when it was started and only just read it.

As I have said elsewhere on this site, I am the eldest of 3 children, all born in the late 70's early 80's, and in Australia at that time they were only letting mothers who had already had a child with SB take folate because they weren't sure whether it had any bad effects on the mother or the baby. My mum therefore started taking folate after I was born (SB L3/L4, Hydro)brother and sister are both perfectly 'normal'. My first cousins are all 20 years or so older than me, so I don't think their Mum would have taken folate back then when they were born, and they do not have SB, and neither do any of their children. My only relative (that we have ever managed to find) with it is a very distant cousin on my father's side of the family - my Great Great Great Great Grandmother's sister's Great Great Great Grandson. As you can see, VERY VERY thin link, but I guess considering the link is that long ago, there may have been miscarriages or deaths from SB before SB was even named. No miscarriages or infant deaths that we know of, though.

My siblings, I assume, both know that they or their partner will need to take high doses of folate if they are ever even remotely contemplating having children. (I have not been there when it has been discussed with them, but I am sure Mum and Dad (or their doctor) has talked to them.)

Love Papillon

[Dodger67]

It wouldn't hurt to talk to your sibs about it, seeing as you only "assume" that they are properly informed.

[LillyPie]

So I am wondering now if I should get my kids on Folic acid? Just as a precaution, although I am kinda sceptical about the whole folic acid thing... My moms cousin had hyrdocephalus (know one knows if she had SB though, because it was so long ago probably mid 50s to late 50's)and died as a young child because there was no medical attention for the child,( very small town in NM called Tularosa) I think she lived only to about 5-7 years of age, my mom has scoliosis and I really think she has SBO because of a lot of her symptoms point to it, (some bladder control issues, feet problems, back kills her most the time) but it hasnt been something that she has had a lot of problems with until she was an older adult. I think that for my family its most def something genetic combined with Lilly being child # 4 in a period of 6 years.

[LillyPie]

Oh and BTW my child # 3 has Aplasis Cutis Congenita which was diagnosed too late because Lilly was already born, but one of the theories of what causes this is a failure of the neural tube to close,,, HELLO thats what SB is... and Lilly was born exactly 1 year and 9 months after her... http://www.dermpedia.org/baby-dermpedia-for-beginners/aplasia-cutis-congenita
Elayas is on her scalp, just at the top/back of her scalp, she was born with no skin, just a deep ulcer, she has no hair growth in the area its about an inch in diameter and perfectly round..

[Dodger67]

Your daughters absolutely must take folic if they want to get pregnant, starting at least 3 months before they stop using contraception.
The same applies to sons' wives/girlfriends.

[Jwm]

I am also wondering if it is Genetic? I have SB, My cousin also has SB, and there may have been at least 1 other case (that we are not sure about since the baby was born at 4 months and did not live. )

[Jill]

Interesting about the different amounts being recommended in different countries... In Canada (or just Ontario?), they recommend 0.4mg daily, but up it to 1mg 3 months before you conceive and throughout your pregnancy. Once you're related to someone with a NTD, it's upped to 4mg, basically until you're past child bearing age.

I'm glad you bumped this! I have cousins starting to have kids now and I wasn't sure about warning them about folic acid, but I guess if they're MY cousins, not my sons..?

[jennycaps]

Thank you for all the advice.... My boyfriend and I have just started about the possibility of having children, and I keep hearing that I should be taking folic acid as soon as we make the decision. I also hear it is in many multivitamins. Is that enough?

[Dodger67]

You need to take about 100 times the amount of folic that is usually in ordinary multivitamins - its nowhere near enough.
But you can't take an entire bottle of multivits every day - the other ingredients will kill you!
You need a prescription for the super-dose folic.

Be careful not to confuse milligrams and micrograms.
1 milligram = 1000 micrograms

[Papillon]

I am also wondering if it is Genetic? I have SB, My cousin also has SB, and there may have been at least 1 other case (that we are not sure about since the baby was born at 4 months and did not live. )

It is genetic - it is a congenital abnormality, which means it is genetic, but it doesn't make much sense to me who it strikes and who it doesn't - I have a very distant cousin with SB but other than that no-one else that we know of, my siblings were both born after me and Mum got the high dose Folate because she'd already had me (back in the late 70's/early 80's when they were still testing it and weren't sure if it would do something bad as well as preventing SB they only gave it to Mums who had already had a child with SB - I was born in '77, my brother in '79 and my sister in '83). The reason why our relatives MUST take A LOT OF Folate BEFORE they ever consider becoming parents is because anyone related to us has a MUCH higher chance of having a kid with SB than the general population.

[valerie]

Hiya, my sister is pregnant and my husbands sister is pregnant and i told them both to take the high dose of folic acid... their doctors didnt hear much about it but said there was no harm in it... i made sure they took it.... My sister lives in Jersey united kingdom, very few people there with SB but you never know so whats the harm in taking a pill a day.... also abbys mam, how are you finding the services in Dublin, i live in Cork so not too far away!

[Amnada]

I've been thinking about this - I'm glad the thread got bumped.
My sister and sister in law are both thinking of having more children. I told them to increase their folic acid (seperate pills) and to see if they need a prescription or special order.
I also scared my cousin in law who is pregnant, saying that at her 18 week scan she should tell her midwife that SB is in the family. Too late for extra folic acid.
I personally was taking the regular prenatal vitamins before I got pregnant with my son. So I'll definately see about the high dose when I start thinking of more kids.

[ainemc]

I was told my brothers and my partners brother must get their girlfriends/wives to take the higher dosage of folic acid. Although my first cousin has spina bifida, the geneticist told us she wouldn't have recommended we take the higher dosage of folic acid before I felt pregnant but now obviously I have too. So might be a good idea for cousins to take the higher dosage too although the fact that my baby and my cousin has spina bifida it may not be a genetic link but may be down to coincidence. Still, I would advice my cousins to take the higher dosage just to be on the safe side.

[Dodger67]

It should go much further than that - see http://www.spinabifidaconnection.com/showthread.php?p=18234#post18234

[Papillon]

It should go much further than that - see http://www.spinabifidaconnection.com/showthread.php?p=18234#post18234

Hi Dodger,

Unfortunately the above mentioned link just comes straight back to this thread. Hopefully you can update us on how far it needs to go.

Thanks,

Papillon

[Dodger67]

If the link doesn't want to work just look for my post dated 02-22-2009 near the top of this thread.