Comments on: Crooked Love: The Story of a Boy and the Mom who Fought to Save Him

By: Heidi Ferrer

Heidi Ferrer — Tue, 29 Dec 2009 06:19:32 +0000

Regina,

Thank you so much for sharing this with your pediatrician! We will change a lot of children’s lives and futures if IS is added to the well baby checklist, so many children are not diagnosed in time, and it is unacceptable if the orthopedic community does not give their parents the proper advice to find this treatment. Surgery should be an absolute last resort.

Thank you for reading about Bex! He is thriving.

By: Regina I.

Regina I. — Sun, 01 Nov 2009 23:14:40 +0000

I think this article should be sent to each young mother’s pediatrician. They should all be enlightened. I will share this story, as well.

Thanks for sharing!

By: Heidi Ferrer

Heidi Ferrer — Wed, 28 Oct 2009 23:24:16 +0000

UPDATE: Bexon is now in cast number 4, and is down from 61 degrees in February of this year, to 21 degrees, just 6 months later! We will get cast number 5 in mid December, and are hoping he will be in the “teens” before Christmas. Go teens!

Once he gets to 10 degrees or below, he will be done with casts and moved to a brace, for maybe a year.

If anyone is inspired to do so, the Infantile Scoliosis Outreach Program (ISOP) that was instrumental in saving our little boy, is a small, grass roots, non profit org. that can use all of the help they can get. Even a small donation would go directly to training more doctors and helping more babies and families with this condition. You can donate at http://www.infantilescoliosis.org

Thank you for reading Bex’s story! – Heidi

By: Heidi Ferrer

Heidi Ferrer — Wed, 28 Oct 2009 21:23:56 +0000

Hi Candice,
I know of a family from Canada who travels to Shriners Hospital in Salt Lake City for EDF, Mehta Method casting. Our doc is there, and he is incredible. Please join the C.A.S.T. Yahoo Health support group for free, and ask any and all questions you have of the wonderful group! There are a lot of factors, but if your child has PROGRESSIVE infantile scoliosis, time is vital. Your child is very young, so that is lucky, but depending on the curve degree, you may want to get an MRI as soon as possible, to rule out congenital scoliosis (bone abnormalities), and any other conditions- most casting docs will need this before casting. Do apply to a Mehta Method doc in the meantime, though, it can take weeks or months to get an appointment. Risser casts are not the same- you want the 3 dimensional, proper EDF casting table. 80-90 percent of infantile scoliosis cases self resolve, but you are wise to be on top of this, now, and do your research. Please feel free to email me privately at bexonsmama@gmail.com and check out the ISOP website at http://www.infantilescoliosis.org

Best regards,

Heidi Ferrer

By: Candice

Candice — Wed, 28 Oct 2009 18:55:53 +0000

Hello, my son was dignosed at birth with scoliosis. He is 9 month now and his curve has progressed. I’m sill waiting to get in to see the spine specialist at childrens in Vancouver bc. I’ve been told we won’t get in till2010 and I’m soo mad. Does anyone know of any hospitals that practice casting in Canada. I hate how doctors tell you to wait And see what will happen let’s fix the problem now. I’m glad to hear soo many people have had good results with casting it gives me hope

By: Heidi Ferrer

Heidi Ferrer — Thu, 06 Aug 2009 21:06:43 +0000

Olivia,

You’re making me cry. I’m so happy for you and for Isabella! My husband Nick is with the editor who is donating his time to edit the first ISOP public service announcement(PSA). I’ve seen a rough cut of the 15 second version and I can say it looks AWESOME!!! It’s very exciting for all of these kids, they deserve the kind of care our little ones were lucky enough to get. We are not angels at all, just driven by the fact that our child nearly fell between the cracks, and that so many others have and will continue to, if we don’t get the word out about this life saving treatment. Thank you for your sweet words.
XO- Heidi

By: Olivia

Olivia — Tue, 04 Aug 2009 16:39:27 +0000

My daughter, Isabella was diagnosed in April 2007 with a 51 degree curve at the age of 12 months. She has idiopathic infantile scoliosis. She is casted every 2-3 months at Loma Linda University Children’s Hospital. In the past two years, he curve has gone down from 51 degrees to 19 degrees. We are almost there!!! Casting positively works and is a much more gentler and effective way of treating infantile scoliosis. I am so indebted to ISOP and our Mehta trained doctor. We were very lucky to start off with a Mehta trained doctor from the start. Many parents are not as fortunate. We must continue to spread the word as casting is not well known. It is an effective treatment and we must make sure it is available to every child with infantile scoliosis not to mention make sure insurance companies cover the procedure. I have had to fight and fight for my insurance to cover her treatment, but luckily, I’ve won every time. Thank you again for shining a spotlight on ISOP.

Heidi – thank you so much for what you and your husband have done for ISOP and our children. You are our angels. I can remember reading several conversations on our support group C.A.S.T.S. about how great it would be if we could have media coverage. We would brainstorm about what celebrity would most likely be willing to adopt our cause and how we would try to approach the media about it. Needless to say…..we’ve been waiting for you. Thank you for for your help in moving this cause forward. – Olivia Nanez-Salazar

By: Heidi Ferrer

Heidi Ferrer — Fri, 31 Jul 2009 00:18:51 +0000

Dear Susane,

An 87 degree curve at 12 months is unbelievable! I can’t imagine how you must have felt looking at that X-ray. I’m so happy you found ISOP, Mehta casting and Dr. D’Astous at Shriners SLC, as we did. Our kids are truly the lucky ones. God bless your little boy, too, and my greatest hope is that other families will find the best treatment for their children with progressive scoliosis before the window of opportunity closes, forever. Dr. Mehta’s innovation of applying these casts to babies (when it had previously only been done on adolescents) has simply changed the way this condition should be treated. So many conditions a looking for a cure and we have one, brought to the U.S. by ONE SINGLE MOTHER, fighting for her child, and now for ours. Heather Montoya is an angel on Earth! -Heidi

By: Heidi Ferrer

Heidi Ferrer — Fri, 31 Jul 2009 00:08:19 +0000

Dear Jodie,

Hi, my sweet friend! Thank you for reading Bexon’s story. Congratulations on your new baby girl! The first year is BIG. Boys are a lot of fun, too, aren’t they? I have GREAT news to report, we just shot the very first Public Service Announcement today for ISOP, the non-profit that directly saved our boy. It features actor Peter Gallagher (“The O.C.”, “American Beauty”), who very generously donated his time, as did the entire professional crew. The set was so kindly loaned to us by the TV show “Saving Grace”.

My husband Nick directed it, and everybody pulled together for a great cause, to spread the word about this life saving treatment to other families and children who will be saved by it. There is GROUND SWELL happening right now for this cause, even the web site http://www.perezhilton.com featured ISOP under “A Worthy Cause” this week. Parent demand WILL make this the standard of care for kids with this condtition, and this PSA will be on YouTube and many TV networks very soon! We’re so happy to have a chance to pay it forward in some small way.

Love, Heidi

By: Around the Web… | For Africa

Around the Web… | For Africa — Thu, 30 Jul 2009 13:52:37 +0000

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