She's lost weight again

Emily just got up from her nap. Diarrhea diaper and bleeding bottom again. I took her pants off and let her walk around in just her shirt and diaper. I noticed how thin her legs are right now! Even my husband --who is not a noticer--noticed. So, I weighed her. She's down a whole pound.

I was told yesterday that our health insurance is cancelled as of today because we did not submit the proper paperwork. I know for a fact that we did, so now it is in the hands of the insurance company to find it. If they can't find it and they reinstate us with a lapse of coverage, we will still be going a whole month without insurance.

These are the times that try a Mom's soul. My heart is just breaking.

We have most of the results!

And they are normal! We are waiting on one more result to come back, but that could take a couple more weeks. This is good and bad to me. I need some answers, more for my own sanity than anything.

Right after I posted yesterday, Emily woke up from her morning nap. Her bottom is completely raw and bleeding, and her poo is not right at all. Of course, there is the outside chance this poo is normal for Neocate Jr, so I am waiting for her dr to call back about it. She is also incredibly fussy again. She is refusing her sweet potatoes that she usually loves, and she is acting like she is hungry all the time. She had over 48oz of formula yesterday! Where is my sweet, happy baby?

Neocate Jr is working!

Emily has had 2 very good days in a row with Neocate Jr. I am still mixing it 3 parts Jr to 5 parts Infant.

She was pretty fussy all weekend, but even that seems to be working itself out. I was worried that taking her off Prevacid was causing that, but she is almost back to her old self. The last 2 nights she has also slept straight through. Before this she was waking up screaming in the middle of the night. Also, she does not smell so terribly awful in the morning...at least this and yesterday morning! I am thinking that we are almost in a detox mode, and we are getting all the bad (and STINKY!) stuff out of her system.

I am nervous about tomorrow. I get to call her gastroenterologist for her bloodwork results. As silly as this sounds, I am worried that they will find nothing in the bloodwork and have to go to more invasive procedures. I just guess it is weird that I am almost hoping they find something--just so we know and can hopefully treat it.

Started Neocate JR and concerning news from the company

We started Neocate Jr yesterday (mixed with Neocate Infant). Emily only got 8oz of Jr, but she was like a baby on speed! I had to stop giving her the Jr to get her to take a nap, which she finally did late in the afternoon. Her tummy got very round and looked and sounded like a water balloon--all sloshy. But, other than that, she seemed to do okay yesterday.

Today, she is very fussy. She's had almost 8oz, and she is napping, and no hyper-babyness. Her diaper this morning was awful, and I'd like to call the whole thing off, but I don't really have much choice. So, we will continue. Her GI took her off Prevacid, so maybe that is the cause of the fussiness. I will call to see about putting her back on Prevacid or Axid if this continues. It will be wonderful if Jr works for her.

The Neocate manager emailed me about the other parents I told her about. She told me that no additional parents had called in with problems with the new Neocate Infant. I know for a fact this is not true. I posted to my Neocate group, and one of the other Moms called Nutricia again today. She had made a complaint in January about her son not tolerating the new stuff. The rep told her that her file and my file are now together. This is very, very concerning to me!

Today's GI appointment

I think Emily's new GI is going to be great for her. I was very impressed with him. He asked lots of questions, going back to Emily's birth and going forward. He spent an hour with us, and it was obvious that he had read (and almost memorized) the records that our old pedi faxed over.

Emily remains a mystery. Her issues could still be an intolerance, allergy, or celiac. He ordered a a comprehensive panel of bloodwork for celiac, IgA, etc, and he wants me to call him in a week for the results. The lab was on the first floor of the office building, and his office was on the 7th. After we went to the lab and were waiting for Emily's turn, he walked in to order another test for her and to talk to me again! He was scouring her records for a specific test result that he wanted to see, and he wanted to ask me about it. Again I was impressed that he did this himself--other than our beloved pedi back home, no other doctor has been this personal.

He okayed the trial of Neocate Jr, but he wants me to hold off on the soy milk because of possible cross-reactions. If Jr doesn't work, he suggested Vivonex--I don't know much about it, so I'll have to look it up. After that, there just isn't anything else to try.

He told me he is a gastroenterology, not a nutritionist, so he is going to try to find the cause rather than treating symptoms through nutrition. He said if we need nutrition support, he will refer us to a nutritionist. He told me there are 2 classes of GI drs--those who focus almost completely on the nutritional aspects and then true GIs. He assured me he is a true GI.

My husband and I agree that the Lord brought us to MI for a greater purpose, and I think these two specialists (Allergist and GI) are proving that.

GI appointment is TOMORROW!

The new GI's office called today. After reviewing Emily's records, they are seeing her tomorrow! The person calling asked me if Em had ever had an endoscopy, so I think she was scheduling that as well. I will have to take my son and older daughter with me to the appointment, so I am praying that goes well. It's awful not knowing any babysitters in our new area!

Emily's tummy is slowly settling down, but apparently, she is still vomiting sometime during the night. I am anxious to hear what this new doctor says!

Allergist appointment today and insurance vent!

We met our new allergist today, and I was very impressed. He saw Emily and our son, and we got some very good information for both of them. Emily was skin tested again today for corn, potatoes, soy, tomatoes, and peas. Although the last skin testing was all negative, she was positive for a corn allergy! NO WONDER she reacts to the emulsifiers in some of these formulas--they are corn derivatives! She is negative for soy, the allergist suggested that we try her on soy milk. If she can tolerate it, that could mean no more Neocate! This dr thinks there are 2 possibilities for what is causing Emily's troubles, and both of which she will outgrow. At best, she will outgrow it by age 2, at worst maybe at 4 or 5.

The allergist highly recommended two pediatric GIs in the area, and I am going to call tomorrow to see if Emily can get in to see one of them sooner than the other one. Apparently, these doctors work closely together--which will be a nice change of pace for us. I am pretty tired of hearing conflicting information between all of these specialists!

Our new insurance company is denying coverage for Neocate. I called the company to appeal the decision. The woman on the phone told me that it is just not a covered benefit. I asked why. She said she didn't know and repeated that it is just not a covered benefit and that I could appeal, but it wouldn't make any difference. I explained that Neocate is a medical food--not jsut an infant formula--only to be used under the direction of a doctor, and here's what she said in response (paraphrased):

Some drs prescribe things that are not covered by your insurance. If your child has asthma and the dr tells you that jumping on a trampoline will open his lungs, the trampoline is not a covered benefit on this insurance.

So, okay. It took all my restraint to remain courteous, but I did somehow.

We finally got an appointment with the new GI--at the end of next month! At least it will only be a 6 week wait rather than a 4 month wait, but still...

Emily has an appointment with the allergist tomorrow. I'm hoping for some answers. A little good news would be great too--the new insurance company is not covering the Neocate. I'm appealing, and I'm praying that the whole process is quick and successful.

Emily had a great time playing outside today. She didn't like the feeling of the grass at first, but when she realized how cushy it was when she fell while she was trying to walk, she started to appreciate it!

We are still waiting on an appointment for a new GI, but Emily's appointment with our new pediatrician went well yesterday. She is now between the 5-10th percentile!

I was reading posts on my Neocate group, and I read about a child who cannot tolerate the emulsifier in yellow label Neocate infant. That just crushed me, as silly as that sounds. No matter which way they turn, the company will be excluding a small population of babies who cannot tolerate one or the other. I had plans of getting all Neocate parents to write in saying that they would give up the "convenience" factor if it meant that other babies could tolerate the formula again. But, now having read about this baby today, I not going to do it. In effect, a change would be beneficial to Emily, but detrimental to this other baby. There is no winning here. Now, our only hope is finding out what is causing all of this and hopefully treating it.

This was a lot to take in this morning, and I haven't even had my coffee to soften the blow.

We found a pediatrician near our new town, and Emily goes in for a check-up on Monday. We met with her yesterday, and we think she is going to be great for our family. She has a similar style and practice as our beloved pedi back home, which was a relief to find! On Thursday Em has an appointment with a new allergist. We are trying to get her into a pediatric gastroenterologist at the local University, but it could take up to four months to get in. Our former pedi is faxing in her records, so we are praying that Emily can be seen a lot sooner. I was very surprised that the new allergist took her so quickly--I called to get the appointment yesterday! (Hope the same is true at the GI!) This allergist is highly recommended, so I am hoping he can give us some answers. Em's right eye has been swollen since we moved, so I am wondering if she is allergic to something in her new surroundings. We will see, I guess.

We've stopped the trial of Elecare. Emily just never seemed to get better since we introduced it. She can handle 1 scoop every other bottle, but any more than that, her symptoms worsen. Also since we have moved, anything she eats (including the limited veggies she tolerated before) makes her sick. There are so many things it could be--the water in our new place, the move itself, new allergies, teething, so on and so on. She's coughing and gagging again and has diarrhea almost everyday, but thankfully, she is not vomiting.

We've given her several days off of Elecare to settle her tummy, and we are moving on to the trial of Neocate Jr tomorrow. Again, it will be a very slow introduction. If that doesn't work, we will be trying the Canadian Neocate infant.

The response from the Neocate company

I spoke with Elayna McKenzie, the Neocate brand manager, again on Friday, and here is a recap of our conversation:

1. Nutricia is looking into alternatives for parents like me. They are trying to get the FDA to allow them to sell the Canadian Neocate Infant to customers in the US. Until the Canadian version of the FDA approves the switch to the gold formulation, they are manufacturing it with the old emulsifier. There are differences in the Canadian formulation—mostly a lower vitamin and mineral ratio, but otherwise, it is the same as our yellow Neocate. Elayna is sending me a case of it to try.

2. Nutricia is a relatively small company, and according to Elayna, they have to pick one formulation or the other—they cannot make both. They had so many requests from parents for a new emulsifier to make Neocate mix better, that they made the change. In Elayna’s words, this change “makes their [parents’] lives easier.” When I explained that this convenience factor is making my baby and other babies like her very ill, Elayna told me that the change not only makes the formula mix better, it also tastes better and looks more like real milk which is important for old children on Neocate. (I am willing to bet that most other parents would gladly give up these conveniences if they knew what the gold label was doing to some of our babies!!!)

3. Nutricia is an international company, and as such, the decision to change Neocate was a global one. The US division cannot change it back. In all markets, Neocate is changing or will change as soon as the governments in each market approve it. The management of the US division is investigating every report of problems that they receive, and after extensive testing, they have concluded all of these issues are not related to the change in Neocate. Elayna assured me that the change was because of money—according to her, the gold Neocate is more expensive to manufacture. Globally, they know about only 1 or 2 cases “here or there” of children not tolerating the change (except in the US market). Brand new babies who are immediately placed on Neocate are not having any issues tolerating it (Elayna knew of only 1 exception to this), and it is just older babies having issues with it.

4. Elayna told me there is “no chance” that they will begin manufacturing the yellow Neocate again.

5. Elayna called my situation “very unfortunate,” and she assured me that they try to listen to their customers. She also said that her CEO has received all our letters and emails, and they have frequent discussions via conference calls with their parent company in the UK about these issues. But, the US division is “kinda stuck” because of they are a small part of a global company. I do think that the company is trying to work with me to find a solution. However, I plan to redouble my efforts to get other parents having issues with the gold Neocate to call or email the company. If they listened to parents and changed it, they can listen to parents and change it back.


So, where do we go from here? The company has 40 cases of the yellow Neocate left, and they are willing to set aside a part of this supply exclusively for Emily. I had been misinformed about the potential for cross-containments in Neocate Jr—it is manufactured in a completely dairy and soy free plant. Neocate Jr has the same emulsifier as the yellow Neocate, and it has a lower carb ratio than Neocate One+, so it is possible that Emily will tolerate this better if we dilute it from 30 calories per ounce to 20 calories per ounce.

I do think that the company is trying to work with me to find a solution. However, I plan to redouble my efforts to get other parents having issues with the gold Neocate to call or email the company. If they listened to parents and changed it, they can listen to parents and change it back.

Thanks to friends and family searching the country for yellow Neocate, we have enough (along with the reserves from the manufacturer) to try these other alternatives. It is a slow process, and many days it is two steps forward, three steps back with Emily. Through it all, she continues to be a happy, sunny baby. Her smile makes it all worthwhile!