Children's Hospital

About 2 1/2 weeks ago, we removed all food from Sophie again because she was still vomiting & losing weight. Unfortunately, the endoscopy proved that she did not have celiac disease or Eosinophilic Esophagitis. They could tell she had significant damage to the lining of her esophagus from all of the vomiting but they still couldn't tell what was causing her to become sick. We started her on acid reflux medicine to help repair the damage & to not let the acid hurt her anymore, but it sill didn't prevent her sickness. My regular pediatrician suggested we remove food again to see how she would handle it & honestly, the last 2 weeks have been the best:

 

 

She has not been irritable, she has not gotten sick & she has crawled around & played more than ever. It is amazing to see the difference in her once we remove food from her diet. I really believe that is why she has been so delayed in all of her gross motor schools because her little body has been concentrating on her being sick instead of learning to do new things.

 

Our pediatrician also suggested we see a allergist & immunologist at Children's Hospital since her scans & endoscopy were both normal. Unfortunately, the doctor we were referred to is hard to get in to & he has to wait & review your medical records to see if you qualify for a visit. Luckily, Sophie's case passed the test & we finally got in to see him yesterday. We decided not to bring Sadie along because we didn't want the distraction, so we spent the afternoon with just Sophie:

 

 

Can you tell by the expression on her face that she is thrilled to be at the doctor again?! I personally like watching them take her vitals because they grow so much at this age:

 

 

She weighed 18 lbs. 10 oz. The good news is that she has gained 4 ounces since her 9 month well baby check up, which was almost 2 months ago. I know that doesn't sound like much, but she had started losing weight so I was pretty excited. Probably the only reason she has gained weight is because we stopped feeding her food. She is still getting 4 bottles a day & luckily she is getting enough nutrients from the formula to sustain her since she isn't consuming food. And she is actually holding the formula down & not throwing up anymore, which is the biggest reason she hasn't lost any more.

 

We met with Dr. Bird & after explaining our situation & reading through my journal, he said right away that he doesn't think her problems are related to food. That is what I originally thought because she isn't having the typical symptoms that you usually get with food allergies, some of which we experienced with Sadie & her dairy allergy. But he did a small round of allergy testing to see if she was allergic to the most common allergens:

 

 

Unfortunately, she does not have a single food allergy, which kind of surprised me. I didn't really think all of her problems were due to allergies, but I kind of expected to see an allergic reaction to dairy since she had it earlier & her sister had it to. So, the good news is that we ruled out something else. The bad news is that we still haven't isolated the problem.

 

Next we met with a dietician. They have put us on a strict diet & that we are to follow for the next 6-8 weeks to see how she does. We are starting with neocote, which is a pudding, just like her formula - hypoallergenic. One of the most clean things she can eat. If she can't handle the pudding, then we will know for sure that it is not a food issue but a GI issue. Neocote comes in a powder packet & I mix it with nursery water to make the pudding:

 

 

I am supposed to give her the pudding 1 hour after she has a bottle since her stomach can't handle much these days & we don't want to fill her up too fast. So we are doing 2 small feedings per day between bottles. If she goes a week without throwing up, then we will slowly introduce fruits & vegetables, but it's like starting over with a younger infant. I was given a list of some of the easier fruits & veggies that infants can digest easily & we have to start with those & she has to have each one for 5-7 days before we introduce another one. And she can only have pureed. They want us to go for weeks at a time without her getting sick before we introduce table foods. Needless to say she sent me home with a lot of paperwork regarding her diet:

 

 

October 1 I started a journal specifically for Sophie that sits out in our kitchen. I have been tracking everything she eats at what time & when she has gotten sick. All of her doctors have really appreciated it because they are trying to use it to discover patterns, but so far we haven't figure out anything. But they asked me to continue journaling in detail everything she is doing:

 

 

Like I said, the last few weeks have been great. She got a second tooth, she finally started crawling around 10 months & she is happier these days. But I realize that she will be a year old in one month & formula alone with not sustain her much longer. Hopefully we will figure out soon so this girl can continue growing, developing & feeling better.