Help me raise $500 for the CARES Foundation!!!

CLICK HERE TO HELP MARISA RAISE $500 FOR THE CARES FOUNDATION!
So if you have click through to my "other blog" thank you! Now here are the reasons that I do what I do...Jake, Mia and Shelby...my babies...If you read below you will learn about me and everything that makes me...well, me. From 1 mother to another, from 1 parent to any other parent out there...please help me raise this money. There are thousands of very worthwhile causes out there...this one happens to be mine and I have been given it for a reason.

I want to make a difference for my children and this might help in some way. It may seem like a small donation for my charity, but NO donation is EVER small.

My story is below...my life has changed, only for the better...almost 5 years ago today...Happy Birthday Jake...life would not be the same without you. And to you Shelby...I am so glad that we meet...my life has only been better since you arrived. Thank you all once again for your support!

Shelby Grace is here!

For those of you who know my personal story, Shelby Grace was born on Monday, August 24th. She was diagnosed with SWCAH via a CVS test (the same as her older brother Jake). I had a very difficult pregnancy, but the light at the end of the tunnel has arrived and she was WELL worth the wait!

Because I was proactive with our Dr's, Shelby was started on her medicine 8 hours after she was born. The state of Florida DOES test for CAH under the PKU umbrella of tests done un the hospital just after birth. This is how we learned that Jake had this condition. We know that Shelby has a wonderful life ahead of her. I am so blessed that this little bundle of joy is here...she was meant to be born into this world for a reason. We love you Shelby!

Dexamethasone and Breastfeeding

I know that this might be a common question among parents that are expecting a child with or without CAH, but are awaiting results. I am expecting a daughter with SWCAH and have learned ALOT throughout this pregnancy. I had recently contact Dr. Maria New, a world leader in research and development pertaining to CAH (she has literally dedicated her life's work to this disorder). Here was my online conversation and the valuable information that I would like to pass on to you.

Marisa's Inquiry:

Good Morning Dr. New!

My name is Marisa Langford and I spoke with you in April 2009. I live in FL and my doctors at Florida Perinatal have sent all my CVS tests to Mt. Siani to you for results.

My husband and I are both silent carriers. Our 1st son has SWCAH, our 2nd daughter is not a carrier and our 3rd daughter (due August 31) has SWCAH.

I am writing in regard to a question I have about the dexamethasone and breastfeeding. I have been on dex since April 2009.

I do realize that I will have to ween myslef off of the dexamethasone, but how will that effect me breastfeeding my child as I would assume that the dex would pass to her through my breast milk. My son was started on Cortef at 4 days old and our pedi-endo, has said that our baby will start sooner as she has already been diagnosed.


My fear is that I would be over supressing her with too much medicine (my dex and her cortef) and this is why I am contacting you.

What are my choices and what do you recommend to do in this situation. I would like to breastfeed, however if I DO NOT want her over supressed with medicine. Please advise me as to how this situation is handled as I need advice. I have also cc'd Suzanne from the CARES Foundation as any advice on this topic would be wonderful to reference for other mothers in my situation too. Thank you both for your time.

Dr.New's Response:

Dear Mrs. Langford,

I have the following responses to your questions:

1. I have never weaned a patient under my care who is treated with dexamethasone during the pregnancy until delivery. The patients all stop their dexamethasone treatment abruptly upon giving birth. None have reported any negative side effects from discontinuing dexamethasone treatment after birth. Logically, it would seem that weaning makes no sense, as the dose to the pregnant mother is very low. Further, the newborn's adrenals are not suppressed as the 17-hydroxyprogesterone in the affected newborn is very high, indicating the fetal adrenals are not suppressed. It would seem very unlikely that mother's adrenals would be suppressed, if the fetal adrenals are not suppressed.

2. It is unlikely that your newborn baby would be oversuppressed from dexamethasone in your breast milk, even if you continued the dexamethasone, the level of which would be waning in your blood. However, this could be monitored by measuring the 17-OHP level in your newborn. (Of course, if you discontinued the dexamethasone at birth, this would not emerge as a problem.)

I think I have the greatest experience in prenatal diagnosis and treatment, and my policies indicated under #1 and 2 have been successful. I understand that you have told my assistant, Claire Gilbert, that you suffered from dex withdrawal in a former pregnancy. Are you sure that your symptoms could be attributed to dex withdrawal?

Please do not hesitate to contact me further for questions.

Sincerely,
Maria New, MD

Maria I. New, M.D.
Professor of Pediatrics
Professor of Genetics and Genomic Sciences
Director, Adrenal Steroid Disorders Program
Mount Sinai School of Medicine
Department of Pediatrics
One Gustave L. Levy Place
Box 1198
New York, NY 10029

My CAH Pregnancy Story (Part 1)

I have been asked by several people if I would share my experience about carrying a daughter with CAH full term, all while being on Dex (short for dexamethasone). I am more than willing to talk, e-mail, converse, answer questions to ANYONE who has to make similar decisions about the cards that they have been dealt to deal with. (Also, I need to write as a disclaimer that what you are about to read is based on decisions I have made personally and are not in any way associated with the CARES Foundation or any other organization.) I will be breaking this story up as it would probally be WAY to long for anyone to read all at one time. But if you want to contact me talk directly, please do so!

My story can begin on New Year's day when we found out we were pregnant. I KNEW that I was pregnant but my beta test came back negative, and then a week later, it was confirmed via another beta! So being that this is my third pregnancy, 2 pregnancy for me to worry about the results of a CVS, my husband and I discussed me going on dex.

I should back up the story to my 2nd pregnancy. Jake, my 1st, was born and diagnosed with CAH on day 4 of life. He is amazing and we take extremely good care of him. He has an amazing pedi-endo, and we are on top of levels every 3 months. He has olny been in the hospital 1 time with the rotovirus at 6 months, and we have had no major crisis since that day. We are VERY fortunate to have a healthy boy who is a SWCAH child.

We were not expecting to have any other children, but low and behold, Mia was conceived...and we were terrified of what we had done. Jake and Mia are just 14 months apart. So the newness of having another child was part of it, but also know what we might be up against with us being silent carriers of the CAH gene. I immediately went on the dex, but honestly, I did so because I was told to do so...I really hadn't done much research or knew my way around the CAH community as I do now. The dex was a very hard drug for my body to get used to. You adjust as one does for any type of medication. The biggest adjustments were the insomnia and the increased appetite. I would just tell my husband that could never get that FULL feeling. Very strange.

We did do a CVS test through Florida Perinatal and the first set of results told us it was a girl. Honestly, I was so sad. I had always wanted a little girl, but now I was even more worried about what the 2nd results would be. So thousands of rosery's later, we did get that call, that said she was healthy and not a carrier. I can easily remember the time and place we got the call. I stopped taking the dex immediately, but MY body crashed. I didn't realize that I was probally going through withdrawl symptons, but I slept for what seemed like a month and didn't eat very much at all.

Attention all FL CAH families! I need your help!

I have been very fortunate to have come into contact with some VERY impressive support group leaders who are implementing programs that effect the CAH community and their families in their states. I personally will be starting to also try and tackle some of these programs that will benefit our children in case of emergencies. I will need the support of families as strength in numbers is always better. Please contact me directly if you are in the Tampa, FL area as this is the city I will be starting in and then moving on from there. I am anxious to get started. Please contact me directly marisalangford@msn.com I look forward to meeting you!

CARES Foundation

Since 2004, when Jake was diagnosed with CAH, at 4 days old, we found the CARES Foundation online and I have been amazed ever since. This foundation is so important to people like myself who had no guidance or anywhere to turn when a diagnosis is made with your child. Being a new Mom, learning the ropes of motherhood, all in addition to learning about a rare disease that now becomes top priority because without learning about it, your child will be the one who suffers...is all SO much to take in. With the support of CARES through phone calls and online direction as to how to educate myself on CAH, I can now say that over the past 5 years, I am confident in my understandings of this rare disease and would like to start to help more people who feel just as lost as I did at the beginning of my journey.

I am going to attempt this through assisting more people in FL who might need assistance or just someone to talk to (and for those who know me well, I am always one to listen and talk).

This is not an easy task. Learning about how to care for a child with CAH is wearing on the parents. We as parents only want to best for our children and sometimes it is just nice to talk to someone who has been through the same types of experiences. CAH is still so rare and many questions come with many "possible" outcomes. Personal experiences are one of the best ways to learn.

A huge thank you to all of the main CARES people in NJ and especially to Debbie Brown. She has been a wealth of information and such a nice person to speak with.

For all of you who I am so excited to meet, please know that I am available at any time to talk, pass along information or give you any insight to my personal experiences with my son and soon my daughter. I have learned alot through ecperience with CAH, doctors, medicine, etc. I hope that some pieces might help someone out there as I remember how scared I was at the beginning. There are great people out there to help. I hope I can be one of them.

Inspiration

So it is 4:05 in the AM and if you know anything about my 3rd and last pregnancy, you would know that this is a normal wake up time for me these days. Well, it has been a while since I have been able to keep up any of my blogs...yes, I know it's corny, but honestly, I seem to not be able to keep a journal for the life of me, and writing online seems so much more doable these days. I feel I have so much to tell, no one to listen (not that I care) but maybe someday people will find this and maybe be inspired...I am all about inspiration these days. Alot has happened in 2009 (and it's only July) that I have been trying to grasp everything and it's meaning as to why me...why us...why to the people I love...

I am exactly 30 weeks pregnant with Shelby Grace and can't figure out how I have actually made it this far. I didn't think it would happen towards the beginning of this pregnancy. This entire pregnancy has been an experience I will never forget and I believe that it has made me an even stronger person for myself, my children and my family. Shelby is my light at the end of this tunnel my family and I seem to be swimming in. I cannot wait to meet her and introduce her to the wonderful people I have in my life.

Life. That's another topic I have been struggling with these days. I seem to look to more people for inspiration to help me realize how lucky I really am. Yes, again, I know this all sounds so cliche, but it's just the way I fell these days. Keeping a positive attitude and focusing on what I have, not on what I don't...what I can do...not on what I can't do...how I live each day, knowing that I am lucky to be here for my family and my children helps me focus on the more important things in life.

I started to re-read The Last Leacture again today. I haven't picked up a book (unless CAH related, parenting related or trashy magazine/ gossip related) since 2004. It really has been a while and it's honestly been too long. This book is inspiring. Inspiring because you, the reader, are not in his shoes. I can do all the things that this man so desperately wants to do, but won't we able to. Certain things get to me these days and this is one of them. If you haven't read the book, go get it, or watch the lecture on You Tube.

I hope that I will be able to post more things on this site that might inspire someone else. I don't feel I am a good writer at all. I don't expect people to follow my blogs, or listen to me be philosophic. I am a terrible speller (please excuse any grammatical errors). I would love to leave behind more than just material things for the people I love while I am here. I want my children to see that being a good person, inspiration, faith and positive attitude are what it really takes to get through life. Chance, Jake, Mia and Shelby are my inspirations. I hope you find yours...