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    Sometimes it takes a mama bear to keep her cubs safe

        Allergy Mama Bear

When water goes bad (Aug. 29th)

10/7/2016

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Baby Bear’s trial of Neocate formula was going well. Things were looking better and he was acting like a “typical” baby. Laughing, babbling, and only crying when appropriate. I was beyond elated. I suddenly understood what it was like to have a “typical” baby.
The only symptom we were having issues with was constipation. Turns out that it is very important to put water in a bottle first  and then put the formula powder in, otherwise you will have a concentrated version of the formula which will cause constipation, especially in a baby just transitioning from breastmilk to formula. I am not sure if this is true with any other formula but it is with Neocate.
We had a few great days. We even had the chance to go out to the local putt putt golf course and have some playtime as a family. Baby Bear didn’t want to be in the carry but just wanted to be held and see what was happening, so I spent the time playing “soccer” putt putt. We laughed and I felt like this giant black cloud that had been surrounding us had lifted and the sun was finally starting to shine down.
And then everything changed again.
Baby Bear started crying more. Then he started screaming again. He became paler and paler. Reflux came back with a vengeance. He was still constipated but when he finally went it was full of white mucus globs. He was puffy looking and looked dazed and out of it. I broke down and lost it. How could my baby be failing this formula? I had heard of it happening but it just couldn’t be happening to us!  Where would be go from here?

In my panicked and emotionally broken and raw state, all I could do was imagine losing my baby. I wept for hours with my husband patting me on the back. I had reached my breaking point.
I searched my mind for anything that had changed…anything! The only thing I could think of was the water we were using. Water?! Could that possibly be the problem? I had, again, heard of children reacting to certain kinds of water (processing plants use a lot of corn products which can cause major issues for children who are extremely sensitive to corn), but could that really be it?
I went back to boiled water. I also decided that it was time to get some help. I planned a visit to see my family 3+ hours away. I needed to be around people during the day. I needed someone to help give me perspective and tell me- Yes, that is a typical baby reaction or No, that is not typical at all, we need to see a doctor ASAP.
A day on the boiled water and he started doing a bit better.
Two days on it and he had stopped screaming.
Three days on it and you couldn’t tell there had been anything wrong. He was a smiling and laughing baby again.
Water was our issue. Mineral water and spring water were BAD. Distilled water or boiled water was better. Reverse osmosis water? We need to give that one a trial.
On day two of the boiled water trial, drove down to see my family and made an appointment with the family practitioner who we adore down in that area. She is wonderful, supportive, and will listen. She won’t pull her punches though or sugar coat things, which is a good thing. But she will also be more than will to tell me if she doesn’t know something, which is a very good thing!
We sat in her office on some big couches, we were the last patients of the day so we had the place to ourselves and we talked. We talked for an hour and half. It was so nice to be validated as a parent. Told that I was doing an impossible job but that I was doing it and doing it well. Told that, No, I was obviously not crazy and that while she might not understand what was going on or even know how to help us there WAS something and something serious going on. I breathed with relief.
She checked Baby Bear over and noticed that his pupils were not responding to light stimulus. Crap. At times his eyes had looked different to me but I had thought that it was just my imagination playing tricks and when your kid is screaming and pooping blood and mucus, well, his eyes are not something you focus on. She gave us the number to a pediatric ophthalmologist and said she hadn’t ever seen anything like that before when a child could obviously see.
Still, despite this new shock and possible visual issues, I was still relieved that my baby was starting to act happy again. That we weren’t failing formula. Thank God!!!  The problem with his eyes? I have no idea what to think about that, so that is a problem for another day, when we can get in with the specialist.

Update: by the time we saw the specialist, Baby Bear's eyes were back to be responsive. The only thing we can think of is that it was yet another kind of reaction for him. I guess we will have to wait and see how he reacts in the future. 

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    Author

    I am the mother two wonderful and Rare children and am honored to be the step mama to two awesome teenagers.

    Little Cub is fantastic little girl who has a rare form of food allergies called FPIES (Food Protein-Induced Enterocolitis Syndrome) and other complex issues. Baby Bear is a new addition to the family but he seems to be following in his big sister's footsteps with his own complex issues.

    You are your child's voice and biggest advocate when they are young. Until they they are old enough to be their own advocate, which is the ultimate goal, sometimes you have to channel your inner Mama Bear to face the challenges come from raising a special needs child. This is our family story and how we are learning to navigate the waters of food allergies and complex Rare issues while trying to run a small hobby farm.

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