Pediasure warning and changes!!!

After several months of feeding/vomiting frustrations, we have finally made some big changes.  First, a warning to mom's with babies/toddlers...DO NOT GIVE THEM PEDIASURE.  Our nightmare started on Tuesday February 5th which is the day Madilyn started Pediasure per her GI doctor.  Wednesday February 6th, she awoke with a fever and massive vomiting. By Thursday we were admitted at out local hospital for fever, vomiting, dehydration and very erratic sugar levels. They (the doctors) didn't want them any lower than 60 and Madilyn's kept dropping down to 38/40 and they had no idea why.  On Friday morning Life Flight was sent from Milwaukee Children's Hospital to get us.  This was the absolute scariest time of my life.  I was terrified for the first time ever that we may lose Madilyn and not know why.

We have never been able to get Madilyn back up to larger bolus feeds during the day and projectile vomiting has been a daily struggle for months.  The GI doctor's only solution was pediasure and a G/J tube that would go directly into her intestines and bypass her stomach all together.  This would be life changing for her, as odds are against her ever getting it removed.  I have fought this from day 1 insisting that we just needed a dietary change.  The GI doc is adamant that she will not do that so we have found a new GI doc that we will start seeing in July.  Since then my husband and I have scoured the internet for any source of information we can in regards to Pediasure.  We have discovered from a UK website that it should never be given to a child under 22 pounds and that the mystery virus that made Madilyn so ill was probably a reaction to it.  Her little 12 lb body had no idea how to breakdown the amount of sugar and protein in the Pediasure.

I have since worked with a local dietitian and her pediatrician and have put Madilyn on Enfamil at a 27 calorie mix.  She is doing amazing!!!  The vomiting is gone. The gagging is gone. The mucus and coughing fits that happened almost a dozen times per day are gone and so are the hiccups she was getting 10 times per day.  Her tongue is healing and she let me feed her baby food for the first time in months.  She can tolerate larger feeds already and has no diarrhea or other adverse effects.  We have to monitor closely to ensure that her calorie intake supports her activity levels but that's ok, we've always had to do that.

We feel very hopeful for the first time in months that we can finally make progress in the feeding area now.  It's the only area that we have been behind and I'm trying not to beat myself up too much for not being more forceful with her original GI doctor.  I am thankful that we didn't resort to either the G/J tube surgery or the Nissen Fundoplication for the GERD causing food aversion.  The reflux is part of her life but with time we will know if it's really as bad as suspected for if it was the Pediasure multiplying it.  I believe it was the Pediasure.........

Lesson learned again, it's one I learn repeatedly, always always trust your gut.  Nobody knows your child better than you, even if they had MD behind their name..........