MARCEEN'S UPDATE May 27, 2013
I need to add this to my previously written blogs as we have learned a lot more over the past five months. While all the symptoms that I noted were true, most of them were actually tied to artificial dyes, flavors and preservatives. Looking back, this was a time when we were occasionally giving Rebekah "Apple Jacks" cereal and other dairy free things. Apple Jacks alone has both dyes and preservatives that we are now removing from our diet.
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I think I am writing this one out more for myself and documentation than anything, but as always, God is involved in some key points.
This is about Rebekah, re-flux, constant colds, eye infections, surgery, almost two more surgeries, and getting to the bottom of everything. So this is how it all played out.
Rebekah is our 4th child and because of that we probably all suffered a bit too long. Simply because I have been of the mind frame that children get sick, and have not pursued Rebekah's subtle issues too much. They just hardly ever seemed bad enough, but finally we seem to have an answer.
All my children had some re-flux issues but none were ever put on medication until Rebekah. At five weeks I could just tell she was in pain, she was raspy-like, gurgle-ly after feeding, but she was not spitting up a ton. We put her on medication and continued to increase the dose until she was at the max. This did help but was probably only putting tape on an issue that needed addressing. I was nursing her and had been recommended by friends to try going dairy free. I did drastically cut back dairy, but never did any food eliminations. Personally, watching a diet that much was just too hard for me and I was being selfish. We weened her off re-flux medication around six to seven months and she seemed fine, but then I weened her from nursing between 8 and 9 months.
When she started on formula she started to get more colds - or what I thought were colds. This caused her blocked tear duct to have more issues. When she was congested she would get eye infections and it was a vicious cycle. Between the very beginning of January through June she never went more than 2-3 weeks without cold like symptoms. Before her 9 month well visit I noticed the mild rash on her arms (which I originally thought was virus related) never really went away. I realized it was mild eczema and she only seemed to have it at the back of her neck and on her arms. So I mentioned this to her Pediatrician and she thought it could be a sensitivity to something she was eating. We were making her baby food so I knew she was not getting preservatives. Milk did not make sense to me because she had always had some dairy either through me or formula. I believe I was recommended to try some other formulas if it got worse but at that time I was not relating the constant colds to the eczema and everything just seemed like a low-grade issue. It was there but not enough that she was bothered by it.
As her year birthday became closer I set up the appointment with the Pediatric Ophthalmologist to have her tear duct procedure scheduled. I think I got lucky with getting the absolute best guy in the hospital. Rebekah was too big and too determined to fight so what could have been a simple office procedure ended up being an Out-Patient Surgery because she needed anesthesia. Having it done this way there would be no question that they got the tear ducts open. We saw him initially just before her 1st birthday with the surgery scheduled for July12th. The colds and infections persisted but now I was relating everything to her eyes. I thought since the tear ducts were blocked that this was allowing bacteria to constantly build causing her to constantly be sick. This still could have been part of the viscous cycle because she did have closed tear ducts, but I just was not looking at other factors. I took her in for her one year appointment and since she was sick, once again got eye drops and antibiotics for her. Again, I was so focused on her eye issues I did not really bring up the constant colds and eczema. I had just started her on milk and she was probably getting 2 ounces of milk in an 8 ounce bottle. Amazing to me now to realize this is when the "colds" started to get really bad.
So she had the surgery and the first few days was a huge difference. I was sure it worked and this would be the end of her constant colds. We continued to increase her milk and within two weeks I was finishing off the formula and giving her full milk. She started with a cold and her eyes started getting gummy as soon as we finished the post surgery eye-drops. I was crushed because if the tear duct surgery failed then she would need tubes put in, meaning two more surgeries under anesthesia. We were now two weeks post surgery and she had only needed eye drops for seven days. I called the Pediatric Ophthalmologist's office and I told them that I was seeing evidence of an eye infection coming on. They were able to get me in the following Wed (Aug 1st). By Sunday Rebekah was getting sick and her eye was looking rough. By Tuesday I would have normally gone in to the doctor's for her eye infection, but I knew I had an appointment at Children's Hospital the next morning. When we got there on Wednesday morning she was a mess. She was put on a strong antibiotic but no eye drops this time. The doctor and I talked for awhile about why this was happening. He said the tear duct could have closed back up, but she was also obviously sick so it was hard to determine. I told him the colds had pretty much been constant since February and getting worse. I asked him if he thought it could be from the blocked tear duct causing bacteria and making her sick. He said while there was no medical documentation of that I was not the first parent to ask, so I was still hanging to that theory. But he did say if she was really only getting a bad eye with the colds that I should look into other reasons first. He really did not want her to have the 2nd and 3rd surgeries needlessly. We set the surgery for the last Thursday in August (the 30th) and he told me that he hoped I would cancel it. Again he told me to think about allergies... again I said we make all her own food so there really was not anything strange she was getting.
The antibiotic cleared everything up, including her eye, but the horrible diaper rash that comes from an antibiotic persisted even after she was done with the antibiotic. We went out with some friend's on August 19th, and an experienced mom listened to all we were going through with Rebekah. I was questioning canceling the surgery, because her eye was better, but I knew as soon as she got another cold it would get infected again. At this point God gently reminded me that the doctor said if the eye infections only came with the colds that was not a reason for the surgery. When I talked about the cyclical colds my friend asked if I ever thought of food allergies. She also had been one to mention it to me when I was nursing and Rebekah had re-flux. She said she still thought there could be something more and God was using her to remind me there were other factors I had not considered. One week later, on August 26th we went to a new church. The lady in the day care, knowing none of Rebekah's history asked me if I looked into food allergies ever. She said her subtle rash and her fussiness of discomfort seemed to indicate to her that I should look into the possibility. I spoke with her a few minutes and told her all I could come up with was dairy, but that she had always had dairy, so the normal response is that it could not be a dairy allergy then.
That Tuesday, two days before Rebekah's surgery for getting the tubes in her tear ducts, I knew her eyes were not closing up enough to warrant the surgery at this time. Also, since I had been told three times to look into food allergies, I realized that this had to be something I should take more seriously. So Matt and I decided to cancel the surgery and reschedule if her eyes got bad. This is of course right when our family got hit with a bad virus in the house. Sabina, Rebekah, Matt and I all got sick. Rebekah's eye started to get infected and with my army supply of eye drops I determined she needed a middle strength and wiped that out before it got bad.
After this virus I knew I had to figure out the cause of Rebekah's issues. I posted some questions on a parenting group I have been a part of for over 11 years. After hearing many different stories, I decided to do a dairy elimination. The thing is that a whey protein sensitivity does not show up in allergy testing. But others confirmed this sensitivity had caused re-flux, eczema, and cold-like symptoms in their children. After trying a few different milk replacements we ended up going with Almond Milk. Rebekah was a trooper trying different things, but it came down to convenience of being able to find Almond Milk over rice milk. Because we still make baby food (and sometimes she eats what we eat for dinner now) I am able to make sure she is getting protein through other sources. Within a few days Rebekah's eczema was gone!! Even more importantly, her scratching her back like crazy and constant tugging at her ears (which she had done for months but never had an ear infection) stopped too. Oh, and the waking up at night with obvious stomach pain stopped too. We had some teething issues, but she would go right back to sleep. Grandma and Grandpa watched her the weekend of Sept 14th -16th. When we picked up Rebekah she had a break out on her face. Also, she had been up for several hours at night, happy, but wide awake. They promised they only gave her approved foods because they knew we were trying to figure out what was going on. The rash went away, and came back slightly about a week later. At this time I realized some of her puffy snacks had milk proteins in them. I questioned if she could really be that sensitive but decided to eliminate those for a bit too. Looking back, this must have been what Rebekah had that weekend, possibly even causing her night waking for several hours. It had been unusual enough that Matt's mom was sure to tell me how long she had been up and that it seemed odd to her.
So this brings us up to yesterday. In the afternoon at some point Rebekah grabbed my "empty" milk glass and "drank" it. I did not think too much of it. After all, she could not have gotten that much milk. As we were headed out for church Rebekah got really fussy and the nose started running again. We have some sniffles in the house so I have not thought too much of it. Matt decided to stay home with Rebekah since we did not think she would go to the nursery with this sudden fussiness. He said she was fine with attention and snuggling but then Rebekah woke up at 2 am - wide awake! I gave her a bottle to calm her but she wanted nothing to do with going back to bed. She almost seemed crazy, hyper, and wanted to run all over. Wide awake! (Seems like what Matt's mom described from a few weeks ago.) Matt put her back to bed and she fussed on and off until he went and got her at 3:30 am. I do not think she ever was sleeping. It was about another 45 minutes to an hour until she settled down for him. At 7:00 am she was back up and fussy. As I was rocking her I noticed she was really gassy so I gave her some gas drops. That settled her down a little bit, but she just seemed in pain. Her cheeks are bright red with eczema so I began to rack my brain about what she ate yesterday. She got the runs 3 times this morning and even felt like she had a low-grade fever. I knew she must have had some milk yesterday and even wondered if I put milk in a bottle yesterday instead of Almond Milk. Thankfully God helped me to recall her drinking from my glass. But such a little amount??? Today she was scratching her back like crazy and tugging at her ears. This has not happened in over three weeks. Again, I turned to my mommy friends that have been so wonderful and again they told me that if she is sensitive to the whey protein even the minute amount in the puffy snacks could have caused the subtle reactions over the past few weeks, and a few drops of milk definitely could have caused this bigger reaction between last night and today.
So we seem to have an answer and I am not not going to be the one to test this theory for awhile. It seems to be a sensitivity to whey protein. This is not something that will show up in allergy testing, but thankfully all my friends who have dealt with it to varying degrees have said most children will out grow it. It took a year of God using other people to remind me to look into food related issues. I pray that this will be our answer to her constant colds and Rebekah can finally know what it feels like to have a body that feels good! She has been such a happy girl through this discovery and more so each day. So seeing her such a "mess" today was really hard to see knowing it could have been prevented. Also, nothing much we can do but let it work its way out of her system.
I guess I am just going to really have to read labels and make sure there are no milk proteins at all. It could be much worse as I know so many people who have to eliminate much more from their child's diet. But I am just so thankful after reflecting on everything today that we did not go through with the tubes for her tear ducts. Also that I am now able to "see" how the more dairy she got, first through formula, and then through milk, that the colds got worse at the same ratio. And in the long run, something that she had from the very beginning, really could be an issue all along.
