Follow Up

We saw the GI again today and Ellie is now at 45 1/2 lbs!! So happy for good weight gain. Not as fast as the dr wanted to see with moving to the GJ, but she is thrilled with steady gain. We talked about the Neocate issues and she is concerned about Ellie having constipation issues once again now that we are on the new label Neocate and wants us to try Elecare. We are to try the transition slowly to make sure she is not reacting to it.

She is thrilled though that she is getting more color in her face and her skin coloring is closer to normal. That was the first thing she noticed. She can't wait until her coloring is better and the dark rings under her eyes are decreased even more.

We also talked about our upcoming appointment with the Genetics dr, she is glad this is coming. This is to rule out several things to include possible mito and Elhers Danlos Syndrome. Just “maybe” for the first time she may be actually classified instead of remaining on the idiopathic realm. However, whatever the Lord has in store for the amazing princess is what we will handle in stride and continue to work with her dr’s with.

All in all things finally seem to be moving in a positive direction for Ellie for the first time a very long time. 

Neocate Formula Users PLEASE Read and pass on!!

This has some very IMPORTANT information that needs to have many sets of eyes and ears out for. I am taking this from other posts and some of this has my words and some of this the words of others. PLEASE take this information seriously, take note, and pass this on.

This is very important that ALL of you keep your eyes and ears open. If you see people posting about their GI kid suddenly getting worse, ask about them being on Neocate. I know this this may sound crazy and more crazy to assume that their child/ren are on Neocate. At this point, I believe the efforts of all informed will SAVE lives. There are already children that are sick and even if the mom knows there was something wrong with the formula, the docs won't believe it until they see enough. By then, too many children have suffered.

This is IMPORTANT for those parents experiencing issues with the new Neocate label switch, please call 1-800-365-7354 press option 2 then press option 2 again and that will get you though to the Nutrition center.

Ask for Christine ONLY. It appears these new cans have prebiotics in them by mistake and that is why our children are having RED and RAW butts along with itching, etc.

She will ask for:

• the Lot Number, EXP date, MFD date and the time stamp.
• want to know the time frame in which the issues first occurred.
• In some cases the reactions are within the first 24 hrs, others are delayed.
• It is of utmost importance to remain calm and be supportive of how much Neocate UNFLAVORED W/O PREBIOTICS has helped your child.
• PLEASE CALL AS SOON AS POSSIBLE
• Again: Ask for Christine ONLY and keep record of everything you discussed.

Thanks so much. Let us HOPE that Neocate has made a mistake (far better) then for our children to suffer with no other alternatives.

• For most children on Neocate, Neocate is our last hope.

Further dates update and information:
Parents have spoken with their local complaint department for the FDA. The refreshing side is that with a formula (infant or child) they quote "immediately respond to complaints because in training they are told that their most important job is to protect the babies from (situations like this)."

Follow the link you to a page that you may use to call ONLY if you have already exhausted Neocate and given them your information FIRST. 

The FACT that this is a medical formula means that cross-contamination and possible "trace" amounts in their can HAVE to be labeled. Christine has stated (to other parents) that they (Neocate) DO NOT treat the rice/inulin/fos as for example the way you would treat peanut allergies in a plant made is upsetting other parents. Neocate HAS to know as parents of children with SEVERE food allergies, Eosinophilic reactions, severe GI issues, or their specific medical reason for Neocate that this is NOT ACCEPTABLE!

When you contact Neocate or the FDA, PLEASE have this information on hand:

• all of your contact information
• the cans in question with the label
• be ready to talk about your child's medical condition
• be ready to talk about the timeline in detail up to the hour if you can as to how you came to this conclusion
• be ready to talk in detail about how Neocate has responded. (so far they have been nothing but positive and respectful with everyone!)

Please for those of us with children who could be hospitalized from this mess do NOT share your lot numbers or dates/timestamp with others at this point. Eventually if there is a recall...they WILL announce it!

http://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm