Kiersyn has GERD (Gastro Esophoageal Reflux Disease). She has the "silent" type which means the acid in her stomach comes back up into her throat causing burning, and damage without always resulting in "spitting up". What that means in a real life sense is that Kiersyn experiences a lot of pain - coughs, chokes and sputters when she refluxes and screams a lot while she's hurting. She also responds to the pain with what is called Sandifer Syndrome - a physical reaction involving dramatic, repetitive neck turning and back arching that can make holding her or changing a diaper nearly impossible. She also has a suspected cow's milk allergy. She has been through several medications and now a prescription elemental (contains no milk or soy proteins) formula. It has been a roller coaster and Kiersyn has had many ups and downs and we are not yet satisfied with her quality of life at this point.
Strangely, there are 3 different ways of thinking in the medical field on how to treat cases like Kiersyn's. The first is that of most doctors and Gastroenterologists - try one of three different drugs and physical ways of avoiding reflux episodes like having her sleep on an incline. If those things don't work, you'll have to wait around til the child outgrows it (though some never do), hoping it doesn't cause so much damage that surgery is needed. These doctors, despite good intentions, are simply uninformed and unaware of the latest medications and research.
The second kind is the doctors who ARE up to date on the latest research. The research, completed by the Midwest Acid Reflux Children's Institute (MARCI) shows the dosages of medication given to infants for GERD are severely inadequate because infants metabolize these specific drugs 3 times faster than adults. In other words, the same dosage given to an adult that lasts 24 hours is out of an infant's body (and therefore no longer effective) in 8 hours. These doctors prescribe medications at an effective dosage and are very hard to come by. Though we know of 3 in Houston, all are booked until August.
The third kind of doctors are those who have heard about the MARCI research but are afraid of the higher doses or are too set in their ways to change what they've been doing for decades.
Unfortunately, we have come in contact with doctors from the first and third camps. However, through the wonder of the internet and forums that connect parents like myself who are at their wits end with this whole process of trying to "educate" doctors and fight for what our kids need, I have been able to get in touch with the doctors at MARCI. Remarkably, aware of the lack of knowledge among many professionals, they have made themselves available to provide whatever help needed including a way to order drug components and compound medications in your own home when you can not find a doctor to prescribe it.
This is where we currently are, fed up with waiting to see a doctor who can help, I'm taking it into my own hands - using the internet, e-mail, and even social media to contact doctors who CAN and WILL help. I am in the process of putting in an order for the new medication for Kiersyn and will soon be turning our kitchen into a pharmaceutical lab.
I'll let you know how it goes.
This is one of the most frustrating and emotionally draining situations I've experienced. Nothing like watching your baby hurt and being powerless to stop it. Especially when she feels good and you see her real personality. She's so full of joy. The good news is that most children outgrow GERD before their first birthday, however, in the worst cases - they never do. Pray that Kiersyn continues to improve, that the new medicine will help, that she will outgrow this awful thing quickly and that the rest of us will find peace in the midst of this chaos.
If you want to know more check out
http://www.marci-kids.com/index.html
My parents still talk about how hard it was for them when I was four (before they found out I was hard-of-hearing) going to different doctors and trying to figure out what was wrong with their little girl.
ReplyDeleteI cannot imagine the stress and worry...
Maybe ask the doctors in Houston to call you if they have any cancellation? (I'm sure you've done that... but maybe you could get her seen if someone else cancels).
I am absolutely praying for Kiersyn, that she grows out of this, and that until she does that this medicine helps!