Delilah came into this world at a tiny 5lbs 15oz on January 25, 2009. She came on my birthday after a horrible 21 ½ hr labor and an 8 week bedrest due to severe preeclamsia.. From the start she wasn’t a good eater. She wouldn’t latch to breastfeed and wouldn’t take a bottle. We took her home after 2 days and she got down to 5lbs 2oz. We struggled at home to get her to eat (while breastfeeding and using an SNS pump with Enfamil) and gain weight so at her 2 wk checkup I was told that she was using too much energy to breastfeed and I needed to STOP breastfeeding and pump and bottle feed. I did this but she still wouldn’t eat. Every time we offered the bottle she would arch her back, squirm, cry, pull her legs up to her tummy and wiggle all around. She associated the bottle with pain as we figured out later on after discovering reflux was part of her problem. At 4wks she started to refuse my breast milk altogether so we put her on strictly on Enfamil which made her symptoms worse not to mention made her extremely constipated so we switched to Good Start. At her 2mo check she was still less than 8lbs and I really felt she had an intolerance to milk and possibly soy and wanted to put her on Nutramigen but her doctor kept telling me that MPSI and reflux wasn’t the problem. I have heard “Its just colic” more times then I would like to recount.
At 3mo old she was laying in our bed one day and stopped breathing completely and turned blue and was lifeless…I picked her right up and stimulated her and she started breathing on her own. Scott took her in to change her and this same thing happened 10min later so off to Primary Children’s Hospital we went. This happened another 2 times during the 3 hr wait to get into a room. After a head CT, urine cath, bloodwork, RSV test and numerous others they told us she “just” had reflux. Looking back I cannot fathom that they used the word JUST….
We took her into her doctor the following day and they ran more tests and got us set up with an apnea monitor and everything still came back fine so she was put on Axid for reflux. Before this day she never spit up once! The Axid was horrible on her and made her spit up constantly so a week later they switched her to Previcid solutabs. This stopped the constant spitting up but she continued to arch, squirm and fight eating. She would eventually eat a little here or there but it wasn’t enjoyable for either of us. After joining an online support group called Reflux Rebels on www.babycenter.com I got more tips and advice on what to do. I started to give her Mylanta Cherry Supreme before feedings which helped a ton and changed from thickening her bottles with rice cereal to Simply Thick which was also a great change for her. After a while on the solutabs her stomach would still cramp, she would still have reflux symptoms which included a runny nose, mucus filled horribly stinky diapers, stomach cramps and extreme fussing, so I went against her doctors wishes and put her on Nutramigen. She did a bit better but not much so after doing the pH probe in which she had >144 reflux events in a 24hr period we switched to Neocate (an amino acid based formula with no milk or soy) and finally saw a GI who put her on Zegerid (an omeprozole and sodium bicarbonate powder that’s immediate release). The Zegerid and Neocate combo seemed like a godsend. For the first time in Delilah’s 7months of life I actually enjoyed being around her. She wasn’t always in pain but we were still dealing with the apnea.
It was around this same time that we started to introduce solids to Delilah. This has been one of the hardest things we have ever been through. We started with what the doctors felt we should… Gerber brand squash and sweet potatoes. Immediately she reacted with having severe stomach cramping followed by very foul smelling stools. This lasted days. We decided to then try bananas because who’s allergic to bananas, right? Well Delilah is! She was fine at first but after about a week we noticed the eczema on her legs were getting worse and spreading and she was having more and more stomach issues and bowel problems. We stopped the bananas and she was again fine. We did this same trial and FAIL with peas, green beans, potatoes, every kind of squash, eggs, soy, milk protein and/or lactose (even in the medical form in medications). We also noticed with each hospital visit every time adhesive was applied or she was touched with latex gloves she would get a welt or rash that would last days. Tegaderm was the worst, well besides latex. I remember when we got her ears pierced we had no idea of the latex allergy and the gal piercing her touched one finger of her latex gloved hand on her cheek and it immediately broke out into what looked like millia (or baby acne) but lasted for 8 days. Our doctors also felt as though this was not a true latex or adhesive allergy and dismissed us yet again. I however let everyone that came into contact with her from that point forward that she had a severe reaction to latex and adhesives. When she is immunized now we cannot even use Band-Aid’s because the after effects are much worse on her than a little blood on her pants.
It was at this time that we decided to change pediatricians. I felt as though I had been told “x” wasn’t the problem when it really was so many times I had no faith left in her. Our new pediatrician was and is amazing and listened to me from day 1!
In October 2009 we did a sleep study in which it determined she would stop breathing 7.7 times per hour while sleeping so she had her tonsils and adenoids removed on 1/5/10 and she has done much better since. When we went in for this surgery I came prepared! I brought pictures of every reaction Delilah had had with latex, adhesives, foods (stool pictures as well as rash pictures) and I couldn’t have been more pleased with myself. For the first time I was standing up for Delilah’s health and NOT letting the doctors tell me how something was to be done or would be done. I was the one calling the shots. After the surgeon saw the pictures I brought they decided to suture her air tube to her lip and her IV to her arm instead of using any type of adhesive at all. After surgery we could just focus on her healing instead of trying to treat all the rashes and reactions. I felt so empowered. I was from that day forward even more dedicated to helping my daughter live her life to the fullest and not let anyone or anything get in our way. Delilah is now 19 months and only has about 15 foods she can eat, we deal with reflux and protein intolerant issues on a daily basis and she is the best medicine taker I’ve ever seen. We did a follow up sleep study in April and she is now down to 1.6 times per hour. It’s amazing to me how happy I was when they told me she stopped breathing “just” one time per hour instead of seven. We have come a long way and almost lost our little girl numerous times to complications from reflux and apnea but apparently god saw fit that we keep our little one that we worked so hard to get here. We, as many reflux/protein intolerant parents, have a long way to go in all of this. This is where me becoming part of a nonprofit group comes in and I found the PIC foundation!
Parents of MPSI children and reflux all have had issues with finding the right medications, finding the right foods; finding doctors to listen to us, having people tell us its "just colic" and they will "grow out of it. Doctors should listen to us.....not push us away and tell us that we just need to feed our children more of a variety of foods, and stop chasing the “dream” that this is all related to a possible medical cause like Food Protein Intolerance or GERD. Unfortunately for us our relationship with the medical community is not a great one and I feel that I have learned so much these past 19 months that I want to make sure not another parent feels this way. For us to not get an actual diagnosis until 14 months is honestly ridiculous. If there were more educated physicians both general pediatrics and specialty I believe we could catch these heart wrenching diseases much earlier on and give our children a better quality of life from a much earlier age. It makes me sick inside to know that my child suffered daily for 14 months because I could not get a doctor to take me seriously. I truly believe that part of the issue was I was extremely informed and knowledgeable about pediatrics and I was told on more than one occasion that I was making a “mountain out of a molehill”, “I knew too much for my own good”, and “I was just looking for something to be wrong with my child”. I took extreme offense to these statements made by our physicians for my daughter that I was to trust with her life. I believe in no way should any parent be disregarded because of their background in medicine or anything else. If I had no medical knowledge I truly believe I would have been taken much more seriously. I have been a medical assistant for 10 years in pediatrics so when I had my baby I was sure it would be a cake walk and if anything god forbid would be wrong we would have the best physicians on my side helping me through it! This is why I am so passionate about other parents not going through the extremely long and rough journey I have.
This was Delilah before we got her on Neocate..always crying :(
A thriving 9 month old Delilah after Neocate and on no solids
