There are many websites dealing with Reflux's clinical
issues, but few that deal with the Emotional Reality of Reflux.
Listed at the end of the Website are Many Reflux Links & Journal Entries that will Touch Your Heart Forever
Dealing/Coping/Caring for a baby with Gastroesophageal Reflux Disease can be excruciatingly stressful. Emotionally processing baby's pain, coupled with trying to control a fussing, crying, screaming baby who refuses countless bottles and/or vomits after every feeding can be extremely difficult to handle at times. Sleepless nights, holding baby upright to alleviate the mucous choking/gagging episodes, concern about blue spells, apnea monitors, aspiration, catnaps during the day (NEVER exceeding 20 minutes each), baby arching back in reflux distress, and endless loads of laundry can all lead to resentment and feeling tired and very alone.
Baby's siblings oftentimes feel left out with baby getting all the attention and are "tired of the constant crying." Spouses sometimes find it difficult to understand the intricacies of reflux and the potential, serious medical complications. Surgical decisions can be difficult to make. Family may not fully understand why you cannot travel with your reflux baby and may think you are ignoring them, or exaggerating baby's situation and/or symptoms.
Finally, sometimes the hardest emotional stress is finding a Pediatrician and/or Pediatric Gastroenterologist who "listens" to your concerns, believes reflux is a real disease, acts accordingly to help ease your mind, educate you, and most of all, heal your baby from this awful disease.
I know what it is like. I'm here; just like you. Diagnosis is REFLUX..but nobody tells you the REALITY. Please take a few minutes to read my links and personal journal writings. These passages were written in the predawn hours as I tried to console my aching heart from the Reality of Reflux and the emotional/physical demands placed upon me this past year. After reading these short passages, I PROMISE you will see that YOU ARE NOT ALONE!!!
It is my baby's unconditional love that has made this website a reality for me. Yes, a Reflux Reality, because through his pain and suffering his voice still cannot be heard. He is just a baby unable to speak; only able to cry out in pain. I am his advocate and by the creation of this website his voice shall no longer suffer in silence.
Thanks for Listening.
Cheryl ... (Mom to a 1 yr old with Gastroesophageal Reflux Disease and history of severe food intolerances.)
*January, 2000 * (at 13 mos old) he is beginning to eat solid foods with success, but during March, 2000 the reflux has returned with the excrutiating teething of 8 (yes 8!) teeth at once!!! Apparently, the upset to the PH of his saliva has triggered this flare-up for which Jeffrey is now back on Prevacid 2X/day to control the reflux vomiting and esophagitus
Also, the stomach cramps and intestinal cramps have returned, too .. keeping our fingers crossed this will ease up once the new teeth come through .. 4 eye teeth and 4 molars ..Only Motrin Suppositories will control the swelling and pain. Any meds by mouth cause the Reflux to start hurting him dearly :(
*April, 2000* Was a great month .. OFF ALL MEDS ENTIRELY!!!!!
*May, 2000* Jeffrey is having another rough time with the reflux and back on almost 30mg of Prevacid a day. He had a simple virus that triggered the silent reflux and it has caused him great distress and nightime screaming and pain beyond belief. It's been weeks that I have not gotten a full night's sleep. And, when he screams in pain, he won't let me put him down reclined to sleep ... I MUST WALK AROUND HOLDING HIM on my shoulder like the infant stage. Yet, Jeffrey is hardly infant..he is 26lbs and 17mos old!!!!!!!
Last month, he proudly got the go-ahead from his GI and Ped. to add Rice Milk to his Alimentum. But, this is on hold right now until his reflux is back under control.
It has been a long, long 17mos. yet I still have hope that "this too shall pass."
*July, 2000* Jeffrey is on Rice Milk with TREMENDOUS success beyond beliefHis reflux has calmed down again and, for the first time in his life he is so HAPPY!!! I cannot tell you the emotions I feel and how afraid I am that this won't last and is only false hope. He has been through so many ups and downs with this reflux that another down just wouldn't be fair. I think the Rice Milk is an addition to his diet that agrees with him. It is my "gut" feeling that the Alimentum was not the perfect formula for Jeffrey all these months and that it aggravated his reflux. Really seems like a coincidence that suddenly his reflux is better since he started the rice milk, huh?! We'll never know; but what we do know is that I FINALLY have my son being a happy, well adjusted toddler just like he should be. It's been long...a long 19mos in the making but every step of the way was that much easier sharing it with you, the person who is reading this, for without you the road traveled would have been that much more tedious. Thanks for being here friend.
*Nov/Dec. 2000* We tried to wean from Prevacid without success. He became congested, urpping, burping, slurping and fussing from silent reflux. At least I wasn't in denial this challenge and realized he still needs the meds to be content. He takes 7.5 mgs of Prevacid 1X day and Milk of Magnesia as needed to control the acid and constipation issues.
The BIGGEST achievement in October is that Jeffrey now sleeps through the night for the most part!!!!! I removed all fruit juices from his diet and am experimenting with removing the canola oil that is added to his rice milk per his GI and have had great success! I give 1 tsp of Milk of Magnesia at night (per the GI) and this helps him alot. To date, Jeffrey can eat all foods but raw milk products such as milk, cheese, yogurt. If ingested he becomes congested, constipated and refluxes. Cooked milk such as Mac 'N Cheese is okay and cream sauces too!
UPDATE ~April 30, 2001 ~ JEFFREY IS MEDICINE & REFLUX FREE ~ We rechallenged Jeffrey off the Prevacid by gradually weaning him every other day and then every third day until no longer on the med and he is totally reflux free! This is wonderful for on many nights, he sleeps through the night. He does, however, wake up from Mommy Separation on some nights, but this is so normal at age 29mos to do so! I hope that this success continues. It is hard to "think" that "maybe" he has outgrown his reflux ... I think it is possible but won't allow myself to believe it until much more time has passed. As we well know, teething, viral/bacterial infections, inuries can all spark a reflux flare and he has one more two-yr. molar that has yet to come in!
Jeffrey has been very congested (nasal) during the nights since stopping the Prevacid. I am watching closely b/c it is also pollen season. I don't know if the congestion is from a milk rechallenge, pollen or from any residual reflux activity that isn't hurting him but still ocurring at night? It doesn't keep him awake or seem to bother him, so I will discuss at the next Ped GI appt or his Ped as appropriate.
September 2001 ~ He is still Prevacid free; needs Maalox here and there but can ask for it by speaking now! This has probably been one of the best milestones ever HE can tell me, "Mommy my tummy hurts .. owie!"
May 2002~ Jeffrey is still doing well. We still need to limit his milk and milk products intake b/c he gets congested and has behavior changes shown as very short tempered, impatience and stomach aches as well as some constipation. Otherwise the reflux is doing well as long as we limit the milk products!
Jeffrey is REFLUX FREE! .. He has started to burp!! Ever since he is burping as necessary the reflux is completely gone! We still have to monitor caseine (milk) intake, but the reflux is gone. It took me 8 weeks to admit that for the first time in his life he is reflux and medicine free.
October 2002 ~ Jeffrey had a very scary choking/gagging episode in the middle of the night. He started to gag/choke and went limp in my arms on reflux coming up. I had to pick him up and a slap b/t the shoulders finally worked and he started to cough and gag it up and was okay. He was on the nebulizer for the first time in his life right before this episode and following it for two more weeks because of wheezing from a cold and antibiotics for an ear infection. Apparently, his reflux became flared, too, and caused this incident. The pediatrician said in an extreme situation like this the Heimlich Maneuver would be helpful. Thankfully, this has resolved and his reflux only continues to rear its ugly head .. usually in the middle of the night with some minimal choking/urps/burps when he has too much in the way of milk products. He also gets some eczema and behavior issues that accompany the milk (caseine). We continue to limit his milk products
and that is beneficial. Too much chocolate brings on similar flares and eczema too.
February 2005 ~ Jeffrey is 95% reflux free. He only needs Mylanta here or there at times. He is a thriving 6 yr old boy who started Kindergarten with success this year. I continue to volunteer my time to be the Community Leader of the Reflux Board at iVillage. It gives me such reward to help others in their time of need. My job will never be finished until there is a cure for reflux ... until then, I will help as many people cope with this disease in whatever ways I can.
August 2006 ~ Jeffrey is doing great. He still gets some bouts of reflux with illness and needs to go back on Prevacid for a few weeks and then it goes away. He has moderate environmental allergies that are well controlled with Clariten during pollen season but this year ended up with a sinus infection and needing to go on the nebulizer with Pulmicort and Albuterol for 2-3 weeks. He also had to go back on Prevacid for a month but then it all went away again. Spicy foods such as spaghetti sauce and certain juices and fruit bother him in the reflux dept and he says, "no thank you Mom I get the hot stuff from that". Jeffrey is now 7 1/2 yrs old and doing very well.
Never give up hope for your child .. for if we lose sight of hope, then there is no chance for optimism.
RECAP on SOLID FOOD INTRODUCTION
For many months, while struggling with introduction to solids as an infant and up until 12mos old, he could ONLY tolerate pureed pears, veal, rice cereal + Alimentum formula. This was a very difficult time for us, as Jeffrey was hungry but could not tolerate the solid foods. He has maintained his weight in the 75% which we are quite fortunate to have maintained; many refluxers lose weight .. pls. make sure you healthcare professional is accurately charting your baby's height and weight and addresses any issues that raise a "red flag"!
Please me.with any questions, comments or if you need support.
(This website is based upon varied experiences of many reflux parents and is not intended to take the place of your Dr's medical care.)
Favorite Reflux-Related Links for Info and Support...
The GERD WORD ..Signs/Symptoms of Reflux + Nominate Best Ped/GI
Infant Reflux.Org Site .. "Here we go Again" .. Both children have reflux! .. Links to other stories, etc.
MAC Pharma -Free information and affordable products for all your health and wellness needs
Digestive Disorders - Reflux Information
Babies with Reflux .. Signs/Symptoms/Stories/Diagnosis/Medicines, etc....
REFLUX AND EAR INFECTIONS
PAGER - Allergies ~ Lots of Info and Allergy Links ~ Do Check this one Out!!
Reflux Meds may cause Allergies ... "Dr. Hugh Sampson is quoted in the article..
Excellent Reflux Site written by an RN
REFLUX MESSAGE BOARD
Health and Medicine Website Directory
Breastfeeding & Reflux
F.U.N.D.O. Website Pros/Cons of Surgery Written by Reflux Parents
Reflux and Asthma
Reflux can Cause Sinusitis and Tooth Decay
Website on Wt. Gain/Feeding in Preemies written by a Parent
Links to My Journal Writings....You Will See You Are Not Alone!
Also Links to my Friends' Pages
A Day in My Life
Taking Away Baby's Pain
The Eagle Soars
My Crystal Ball Theory
Jeffrey's Reflux Story
Thank You My Friend
The Last of the Firsts..Jeffrey's 1st B'day
Shooting Stars * Summer 2000
Two Be a Toddler ~ Jeffrey's 2nd Birthday
Mother's Day May 2003 - The Strength of our Children
Infant Reflux Disease - A Guide to Infant Reflux/Pediatric GERD
Shae Lynne's Story
Life on the Reflux Roller Coaster .. A Book Written by Roni McLean who is a Reflux Mom!
Making Life Better. A book about reflux that is Easy to Read!
The Healing (true tales of a food addict). Written by my friend. I am so proud of her!