I have a child with spina bifida and I admit I’m one of the many parents who has mixed feelings about the folic acid prevention topics – surprisingly this is the first time I’m writing about the topic on my blog. I recently read an article written by Dr. Lance Chilton titled “Folate before and during […]
Monthly Archives: June 2015
My 23 yr old daughter w/sb and I thank you for this beautifully written piece.
Thank you for this. I have heard horrible comments such as the ones mentioned. I took prenatals an entire year prior to conceiving my son born with spina bifida. I also found it in my family history. I still have dark days of self blame so now I have this read to pullmeup.
Thank you for writing this! I also have a daughter with spina bifida who is now almost 4 years old, and I also took folic acid. For years I have been thinking that there must be some other cause for spina bifida. It’s only a matter of figuring out what that could be. I was talking to our neuropediatrician and he told me this: there are 3 possible causes: 1) genetic disposition, ie. if someone in your family has spina bifida, there are bigger chances your children can get it (my daughter is the first, and she is my 4th child..my other 3 children are completely healthy) 2) folic acid (I eat plenty of leafy greens, plus I took folic acid supplements), and 3) it happens, ie they have absolutely no idea what yet, but it was the luck of the draw. Throughout the years, I have met more and more people who are part of the 3rd category, yet some doctors accuse us of not taking folic acid. I dare say they are not fully educated on the subject. There has to be more to the story. I only hope that someday, they find the missing link.
I loved your response and could not agree more. That article was just terrible. I was taking folic acid when I got pregnant with Maddy, I was healthy, was not taking any medication, and was doing everything “right “. it did not prevent her from being born with spina bifida, but that in no way changes the amazing person that she is. because of her we also adopted another sweet girl with spina bifida. If it weren’t for Madi we would’ve never adopted my daughter Ramya It makes me so sad that people will see their wheelchair and let it define them. Their disability does not define them.
I was born in 1974, and my first set of surgeries started when I was about a month old. I have had my long list of challenges being born with a disability. Be it putting up with stigma, curios eyes, weird remarks, keeping up with kids my age..etc. I have to admit, my parents and brother were instrumental in putting it in my mind that I am normal as anyone else. There was never a restriction put on me, because of my medical condition. Now I live a near perfectly normal life, and I walk unaided, albeit with a limp. Have been married once, and have a beautiful 8 year old daughter.
I hope this helps in parents with SB children. Keep the spirit up. Never make them feel, they are “less abled”! Its all in the mind. Trust me, both my ankles are fused (there’s zero movement), and I drive vehicles with gear (more so to prove a statement that I am normal and don’t need an auto transmission). Just one of the many things I do, that people feel a SB kid cannot do!
Excellent response!!! My 24 years old son with SB is a professional translator. They can do it!!
Wonderful article. Back when I was born in 1956, folic acid wasn’t in the picture. I have the most severe form of SB, but went to”regular” schools until my asthma got worse. Got my BA, MSW, worked, married (divorced later), active in my church and community despite using a motorized scooter (more because of the asthma, not SB). Have a pretty full life despite many hospitalizations and surgeries. My parents were encouraged by the doctors who said to treat me as normally as possible and they let me know the world wouldn’t conform (not sure if that’s the correct word) for me, but I had to fit into the world as it was.But thank goodness we’ve come a long way to make the world accessible! We want to be part of the world, not objects of curiousity or pity!
Thank you so much for this article. I hardly ever comment them, but here I felt so relived after reading it, I simply had to.
We are from Germany and it’s exactly the same. All you hear them saying is to take folic acid. So I did! Nobody knew about the sb my son (now 4 years old)has even though we had screenings and the triple test done and only found out two days after birth. He has sb occulta and a tethered cord. So far he was lucky in his life since he isn’t affected too badly. And he is the most happiest child I have ever met. He is active and loved by all the people he has met in his life so far…
I felt tremendously guilty for along time. I blamed me for him having to suffer now. After I started to read more and more about sb this guilt finally faded. It’s still there…but only comes up in dark moments.
When ever you talk to people or other parents, hardly anyone knows about sb even though it’s after a heart disorder the second most common issue kids can have. There is such a need for information so I am grateful for this page!
Thank you for sharing your wonderful blog with us. I too have a neurogenic bladder and bowel and I understand the fear and pain. I also write a blog. God bless you, Trudy
I was an RN for 46yrs. When I first started, Children with Spina Bifida usually died by age 4. My last 8yrs I worked in an orthopedic clinic and ran the Spina Bifida Clinic. What a joy it was to get to know the children and the families. I miss the clinic and the fun times with them. and, yes, I know that they have a long and hard row to hoe. God bless you and Chance.
Great blog! I have to disagree with the 70% rate… I find the math involved with Spina Bifida as highly questionable. I read an article citing how folic acid and earlier detection has changed the outcomes for Spina Bifida and yada yada… but what is not mentioned is the heavy increase of abortion and late term abortion. It’s awful for us to think about, but it’s happening at an increased rate. I was very healthy, ate organic, took my folic acid and prenatal vitamins, excercised… you name it! At our first ultrasound we found my sons back opening. Then we were repeatedly asked over and over at appointments whether we wanted to abort. I’m talking 6 times and the last time was at 5 months ???? Can you imagine?! I find it lazy that folic acid is still being pushed, when our foods are all full of folic acid. Even if you are poorly, American food has at least 400mg in it for your average daily meals/intake. They have not found anything specific to deter the prevalence of SB in MANY years. Aborting is not preventative. In fact… a lot of newer information is finding a disconnect between b6 and b9. Some of us are unable to convert the folic acid… therefore creating an even larger problem. I encourage us all to let go of the guilt and be more active in passing good information, like this blog! Your son is adorable and those forearm crutches are hard! Keep up the good work ??
this fantastic piece of writing to increase my know-how.
Amanda, THANK YOU for writing this validating piece. I’m in the bewildered and, at times, defensive 30%. And after seven years–I’m still seeking answers. But, in the meantime, my lovely little girl has gifted me with a higher purpose and helped uncover an untapped strength I never knew I had. I’m on an ongoing mission to “level the playing field” as much as I can for my child. In spite of her many surgeries, it’s my own flagging energy levels that present the most challenge these days (yeah, I often wondered if my daily vitamins and supplements simply evaporate immediately upon ingestion!!!). This kid, on the other hand, was born with an irrepressible spirit, and I suspect an invisible motor, too.
earlier technologies, it’s remarkable article.
You must proceed your writing. I’m confident, you’ve a great readers’
base already!
far. But, what in regards to the conclusion? Are you sure about the source?
Hello colleagues, its enormous piece of writing regarding cultureand entirely explained, keep it up all the time.
Hello dear friends and esteemed connections,
We extend a warm welcome to you in our dynamic company, where quality and reliability are our guiding principles. We are ready to deliver our products and services, adhering to the highest standards, to every corner of the globe.
Our commitment to excellence has led us to successful collaborations in various business sectors. We stand prepared to support you by providing innovative and dependable solutions across diverse industries.
We look forward to having you as part of our network, where each domain becomes an integral aspect of our mutually beneficial collaboration.
company website: https://global.nevmez.com/
Best regards,
Vorobyeva Svetlana
I’ll bookmark your blog and take a look at once more here frequently.
I’m quite certain I’ll be informed a lot of new stuff right
right here! Best of luck for the following!
Reading through this post reminds me of my previous room mate!
He always kept talking about this. I will forward this write-up to him.
Fairly certain he will have a good read. Thanks for sharing!
Akqrslot untuk berlatih dan menguji berbagai sgrategi permainan.
Hal itu menjadi salah satu idikator penting bahwa permainan tersebut mudah
unhtuk ?i menangkan.
one be capable of simply be aware of it, Thanks a lot.
Finally I’ve found something that helped me. Thank you!
I loved as much as you will receive carried out right here. The sketch is tasteful, your authored subject matter stylish. nonetheless, you command get bought an impatience over that you wish be delivering the following. unwell unquestionably come further formerly again since exactly the same nearly a lot often inside case you shield this increase.
up all the time.
but you sound like you know what you’re talking about!
Thanks
It’s simple, yet effective. A lot of times it’s hard
to get that “perfect balance” between user friendliness
and appearance. I must say you’ve done a superb job with this.
Also, the blog loads super fast for me on Firefox.
Excellent Blog!
Your website provided us with valuable info to work
on. You’ve done a formidable job and our entire community will be thankful to you.
Corla188 dan harus saya akui, pengalamannya benar-benar melebihi ekspektasi!
Dengan beragamnya pilihan permainan dan interface
yang mudah digunakan, tidak heran jika Corla188 diklaim sebagai salah satu situs slot online terbaik.
Apa yang paling saya hargai adalah keamanan dan keandalan platform ini, memberikan ketenangan pikiran saat bermain. Plus, bonus dan promosinya
sangat menarik, memberikan lebih banyak kesempatan untuk menang.
Bagi siapa saja yang mencari pengalaman bermain slot online yang berkualitas
tinggi, saya sangat menyarankan Corla188!
I am actually happy to glance at this website posts which includes plenty of helpful data, thanks for providing these information.
????? ??? https://good-akkaunt.ru – ?????? ??????? ?? ???? ?? ??????? ??????? ?????, ???? ?? ??????????? ???????????? ???????. ??? ???? ??????? ??? ? ???????. ??? ????? ????? ???? ?????????? ????????? ??? ??????? ??? ????????????, ??????????? ???????? ??? ????????????? ?????????.
?? ????????? ???: ????? ????? ??????? ?????? ? ??, ??? ????? ????? ????? ??????????? ???????? ?????????, ?? ??? ????? ???????? ????????.
How to convert and deal with PDF files just and conveniently?
What are the different means to utilize a PDF editor?
The on-line PDF editor has more than 12 features
which makes it helpful in various methods:
Kind and edit PDF paper online – First, you need to submit
the document you intend to modify right into the input field.
To include text, move your mouse over the Text button and click on it.
Tap the area of your PDF file you want to include message.
Insert Images – making use of the image icon, you may replace, insert, or change an image
on your record. The device enables you to upload the image from your pc or cellphone (Android or iOS).
Create editable forms – float the computer mouse into
the “& ldquo; Include Area & rdquo; and click. This opens a food selection where you can select the
field type and set the fields how they’& rsquo;
ll show up.
Indicator digitally and include days – our service have a
signature wizard to enable you to append your one-of-a-kind
join a paper. You may choose to attract, post a
prepared trademark or just type with your finger. Resize and drag your
indicator to the desired place.
These are just a few of the means you can utilize the PDF editor free of
cost. You can try it today and see what it can do.
Is PDF Editor Free?
Our online PDF editor is absolutely free. We permit modify PDF online free
of charge. To utilize the solution completely free, you just involve
our internet site and select the device you
desire. Upload your document and modify it. No demand
to create an account.
What formats does this tool assistance?
We have made it feasible for you to produce a PDF version of
any kind of paper These might consist of e-publications,
spread sheets, files, photos, and others. Some document layouts you can modify include:
Photos – an image may come in different
layouts relying on where or exactly how it was developed, or exactly how it was saved.
Some layouts might include JPG, GIF, SVG, PNG, BMP, TIFF, e.t.c.
Spreadsheets – records developed in MS Excel might can be found in formats such as XLS, XLT,
and XLSX. You can additionally transform MS Workbooks
such as XLSM.
Records – a document can be produced in PDF, text, or MS Word.
Some data styles in this group consist of PDF, RTF, DOC, and DOCX.
Ebooks – you can also create a PDF from a electronic
magazine such as an e-book. Examples of such file formats are EPUB, MOBI, or AZW.
Presentations – documents styles in this category include PPT, ODP,
and PPTX.
Just how to transform documents?
It’& rsquo; s simple to convert any file to PDF using this PDF editor.
When you get on this internet site, you initially need to determine the device
you intend to utilize. This relies on what you want
to transform or the data layout you desire
to obtain. Then, follow these basic actions:
Publish the data – Just choose the data you intend
to convert from your computer or smart phone. Maybe an image, Word, or
Powerpoint, or any other documents. You can
likewise upload by using the drag and drop option.
Adjust setups – If you are transforming to PDF, the
device will instantly change the file and it’& rsquo; s
all set for download. Yet if it’& rsquo; s a PDF file you
intend to change, you require to specify the outcome
layout.
Convert – Click the OK button once you made all changes.
Our pdf converter will instantly convert the document to the brand-new
style.
Download your file – You can currently download your brand-new and
edited paper.
If you desire, you can eliminate the data you had submitted along with the new variation. Yet in case you forget to
erase it, there is no demand to worry. The system instantly erases any remaining data posts from our
web server. We do this to protect your privacy and ensure that your records put
on’& rsquo; t fall under the incorrect hands.
If you intend to modify a checked pdf, the procedure is
similar till the third step. On the 3rd step, personalizing may include adding texts, pictures, removing PDF pages,
and other choices, before downloading and install.
The amount of documents can I change at the same time?
Our cost-free pdf converter features a batch conversion function.
Set conversion uses you to upload numerous files and
convert them simultaneously.
When using the cost-free online version, you can change
about 3 documents at the same time. This is a large amount for anyone thinking about a one-off
solution to convert pdf data on the go.
when i read this piece of writing i thought i could also make comment due
to this brilliant article.
?????????? ??????????? ???????? ?????? ???????.? ??? ??????? ? ??????? ?????? ??????? ????????????, ??????? ????????? ???????? ?????? ?? ???????? ? ?????????? ?????.? ??????? ????? ??????? ? ?????-?????????? ?????????????? ?????????? ?????????????,
??????????????????? ?? ???? ???? ??????.? ?????? ?????? ??????? ???????? ??? ???, ??? ????? ?????? ? ???????
??????????? ???? ????????????, ?? ????? ??????? ????? ? ????
?? ??????????????? ????? ??????????.?
??????? ????? ??????? ?????????????? ? ??????? ?????????? ????.
?????? ????????? ???????? ?????????? ????????????????? ??????????, ??????? ????????? ??? ???????,
???????? ?? ???????? ???? ?????.? ????? ??????, ??????????? ?????????? ????????
???????? ??????? ??????? ? ??????
??????????? ? ??????? ????????.? ??????? ?????
??????? ? ?????-?????????? ?????????????,
??? ???????? ???????? ??????
?? ???????????? ? ??????? ?????????? ????.?
?????? ????? ???? ???????????? ???
?????????, ??? ? ??????????? ????????.? ????? ????????, ??? ????????, ?????????????? ??????? ????? ???????, ????? ??
???? ??? ??????? ??????, ??????? ?????? ????? ???????? ? ?????????.
??? ??????? ???????? ?????? ??????? ? ?????-?????????? ???????? ?
????????? ??????.? ??????? ???????????? ?????? ????????? ????????, ????? ??????????? ??????? ?????-???????.
????? ????? ?????????? ?????????? ?????????? ? ???????????? ???????? ??????? ?? ???? ????????.? ???????????? ???????? ?????? ??????? ? ?????-?????????? ????????.?
??-??????, ???????????? ???????? ???????.? ? ???????? ??? ????????????? ?????????????? ?????? ?????????? ?
????? ??????????.? ??-??????, ???????? ????????? ????????????
???? ?? ????????.? ?????? ????????? ???????????? ?????????? ???????????????, ??? ????????? ??????????? ??????? ?? ?????????? ????.? ?-???????, ???????????, ?????????????? ??????? ????? ???????, ????? ?? ???? ??? ??????????? ? ?????????? ??????? ??????, ??? ???????????? ???????????? ??? ????????.? ????? ????????, ??? ??????? ????? ??????? ? ?????-?????????? ???????? ??? ???????????? ?????? ?????????.?
??? ???????, ? ??????? ??? ??????? ?????????? ?
??? ??? ?? ???????? ????????? ??? ???????? ?????? ????????.? ???? ?? ?????? ??????
? ??? ?????? ?????? ??????? ???? ???????? ? ?????-??????????, ??????? ????? ??????? ? ??? ??,
??? ??? ?????.? ?????????? ? ????????, ?????????????????? ?? ???????? ???????, ? ???????? ???????? ??????????? ?? ???? ????????????.?
????? ???????, ?? ???????
?????????? ????? ? ???????? ?????? ??
???????? ? ?????????? ?????.
???????? ??????? ????? ????????????
?????????????? ? ?? ????????????
? ?????????? ??????. ?????????? – https://mydomspb.?ru/ – ?????? ???? – ???????????? ? ????? ???????????? ??????? ?? ????? ???????????? ? ?????-?????????? ?????????? ???????????
???????? ?????? ???????, ??? ????????????? ?????????? ???????????? ??????? ? ??????? ?????? ???????
?????? ?????.?
????????, ?????????????????? ?? ??????? ?????? ??????? ? ?????-??????????, ?????????? ???????????????? ?????? ? ?????????? ???????????? ? ?????????? ?????.? ?????? ??? ?????? ???????? ???????? ??? ???,
??? ????? ???????? ??????????,
????????? ? ??????????????? ??????? ?????????? ? ??????????? ??????.?
??????? ???????? ?????? ??????? ???????? ????????? ??????.? ???????
???????????? ?????? ?????????
???????? ? ?????? ???????? ????????? ?????????.
??????? ?? ???????? ?????????
???????, ????? ??? ??????? ????????, ????????????, ?????????, ??????? ?????? ? ?????? ??????????? ???????????.?
????? ?????????? ?????? ???????????? ???????? ???????? ??????????? ? ??????? ????????.? ??? ???????????
???????? ???????????? ???????? ???? ? ????????
??????? ??????.? ????????, ?????????????? ?????, ????? ?? ???? ??? ??????????? ?????????????? ? ??????????? ????????????,
??????? ?????????? ???????? ?????-??????? ? ?????????????
?????? ??????????.?
??????? ????? ??????? ? ?????-?????????? ?????????
???????? ???????? ?????? ?? ???????????? ? ?????????? ?????.? ?????? ????? ???? ???????????? ??? ? ????????, ??? ? ?
??????????? ?????.? ????? ????????, ???
????????, ?????????????? ?????, ????? ?? ???? ??? ??????? ??????, ??????? ?????? ????? ???????? ? ?????????.?
???????????? ???????? ?????? ??????? ? ?????-?????????? ????????.? ?????? ?????, ??? ???????? ??????? ? ??????, ????????? ???????? ?? ?????
?????????????? ?????? ?????????? ?
????????? ????????? ???????????.? ????? ????,
??????? ????? ??????????? ????????? ???????????? ???? ?? ????????,
????????? ?????? ?????????? ???????????????.?
??????? ??????????? ???????????? ???????????? ?????? ? ?
????? ???????? ???? ????? ? ????????????????? ?????????? ? ???????????, ??? ??????????? ?????????? ?????????? ? ?????????? ??????.?
???? ?? ?????? ??????? ???? ???????? ?????? ? ?????????, ??????? ????? ???????
? ?????-?????????? ? ??? ???????? ???????.? ?????????? ? ?????????????? ?
?????? ???????, ??????? ??????? ??? ???????? ???????? ???????? ??????? ? ??????? ????
???????????? ? ?????????? ?????.?
?? ???????????? ???? ??????? ?? ????? ? ???????? ??????
?? ???????? ? ???????? ????? ? ??????? ???????? ??????
??????? ? ?????-??????????.?
Warm welcome to our dear friends and esteemed associates,
We extend a warm welcome to you in our dynamic company, where quality and reliability are our guiding principles. We are ready to deliver our products and services, adhering to the highest standards, to every corner of the globe.
Our commitment to excellence has led us to successful collaborations in various business sectors. We stand prepared to support you by providing innovative and dependable solutions across diverse industries.
We look forward to having you as part of our network, where each domain becomes an integral aspect of our mutually beneficial collaboration.
company website: https://bolsugar.com/
Best regards,
Sokolova Ekaterina
lukrativen Bonusangeboten. Eine besonders beliebte Aktion sind die sogenannten “ilmaiskierrokset”,
also kostenlose Freispiele, die man als Spieler im Zet Casino erhalten kann.
Diese ilmaiskierrokset sind eine tolle Möglichkeit, um neue Spiele auszuprobieren und dabei auch
noch die Chance auf hohe Gewinne zu haben.
Die Freispiele werden oft als Teil eines Willkommensbonus oder als regelmäßige
Aktion für treue Kunden angeboten.
Um diese ilmaiskierrokset zu erhalten, muss man meistens eine Einzahlung tätigen oder bestimmte Bedingungen erfüllen. Sobald man die Freispiele erhalten hat, kann
man sie an ausgewählten Spielautomaten nutzen und so sein Glück
versuchen.
Im Zet Casino gibt es eine Vielzahl an Spielen, bei denen man die ilmaiskierrokset einsetzen kann.
Von klassischen Slots über Tischspiele bis hin zu Live Casino Spielen – für jeden Geschmack ist
etwas dabei.
Wenn man also auf der Suche nach einer spannenden und lukrativen Bonusaktion ist, sind
die ilmaiskierrokset im Zet Casino definitiv
eine gute Wahl. Also nichts wie los und registrieren Sie
sich noch heute, um von diesen tollen Angeboten zu profitieren!
account it. Look advanced to more added agreeable from you!
By the way, how could we communicate?
Website Penipu
too.
spannende neue Funktion namens „Prominent Content Links“ vorgestellt.
I have always dislik?d the idea because of tthe expenses.
But he’s tryiong none the less. I’ve been using WordPrsss on a number of ?ebsites f?r about a year and am worried abo?t switching to another platfo?m.
I have heard very good things about blogengine.net.
Is there a way I can ?mport ?ll my ??rd?ress content into it?
Any kin of help would be re?lly appreciated!
by Amanda Kern
42 comments