Peanut's sees a dietician through her metabolic doctor's office. She works out our recipe for blenderized food, as well as orders the formula and calorie supplement we use overnight. She emailed me this week because we have an appointment tomorrow (Thursday). She said that we need to change the formula Peanut gets at night, which she has gotten since she was 2 years old. She's on Neocate Infant, and has never tolerated the Junior or Plus One or whatever the big kid versions are called. She can't do milk or soy, so this is the only one we've found for her. The dietician says that Neocate Infant now has MCT oil in it, which is totally contradicted with her metabolic disorder. It is the exact type of fat that her body cannot break down! So I researched it a bit ... it turns out the MCT oil is in the DHA and ARA version. The version which we were switched over to during the early SUMMER! Keep in mind that Peanut had never had seizures until August of last year. Three months after her formula started containing MCT oil, which she can't digest and builds up in her body as toxins.
Coincidence?!?!? It doesn't seem like it. So we meet tomorrow to discuss this, and figure out what formula to change her to. I really want to know if this could have started her seizures! If so, it seems like something the dietician should have caught a loooong time ago. If this is the cause of her seizures, I wonder if it's possible to stop them by switching formula, or if the damage is already done.
Seriously, I am so upset about the potential that these two things are connected .... I hope and pray that the dietician has come up with a new formula for us to use! I am not going to keep her on this one any longer, that's for sure!
UPDATED TO ADD - I just got off the phone with our DME company. We were switched from regular Neocate Infant to Neocate Infant with DHA and ARA in the very beginning of August last year. Her seizures started the end of August! Could it be???
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
10 comments:
How frustruating!!! But, wouldn't it be wonderful if this was the cause of her seizures and that by stopping the formula, she could be seizure free?! I pray that this is the case for her! I hope that you can find a new formula that works for her! HUGS!!!
Oh my goodness. If that is the cause of her seizures, I am mad for you. Someone needs to be held responsible for dropping this ball. This is not a small thing! I know getting Peanut on the right formula is the priority, but once that is taken care of, I would go head hunting if I were you. If they can drop the ball with Peanut, they can do it to someone else. I am so sorry this has come up but I pray that it gets resolved soon.
Hugs and prayers.
P.S. I got my prize from your giveaway, thanks again!
If that's the reason for the seizures, I agree you'd better go on the war path. I'm praying that some new formula is going to take those bad boys away. How cool would that be?!?!
Oh, I can't believe that! Of course, if she could become free of seizures by getting that out of her diet, that would be amazing! I hope they find a substitute soon. We're so lucky to live in a country where they even have the means to figure out metabolic problems.
Oh My Goodness! What a terrible mistake for a dietician to make! I pray that by changing Peanut's formula her seizures go away. I guess if the formual is the cause of Peanut's seizures, you both were very lucky that she didn't have more serious complications. I would definately let someone know that her life was put in danger.
Why can't Peanut just be put back on the Regular Neocate formual which doesn't have the MCT oil and give her vitamin suppliments to replace the ones missing in the infant formula?
Yes! That is definitely something they should have caught a long time ago! As you know from my last post I know exactly how you feel when something should have been caught sooner. Sooooo frustrating! I am hoping that these things are connected and that stopping the formula will stop the seizures! Prayers to both of you!!!
I would be freaking out too!! I can't believe that happened. I mean that is a really long time to not notice this! AAAHHHH doctors and nutritionists are so frustrating! I'm totally with Alicia on this. Get Peanut on the right formula and then make you get to the bottom of why this happened and why that person still works there.
Anyway If this is the reason for the seizures then I hope they will go away and if its not causing the seizures then I pray she will have less and less until they are gone.
Good luck on getting things straightened out and Prayers for you all!!
Oh my! I hope you can find a decent alternative without the oils.
Unbelievable! I would be so upset. Praying you get this figured out. Yes, you are so right, cathing isn't the end of the world, but through a vesicostomy would be so much better. I don't like other doing it down there. I don't think they clean as well or care. I know Annabel knows that is not someone she know, like nurses or whatever!Please keep us posted as to what you find out tomorrow.
WOW! That's unbelievable. I hope you get answers and SOON! Keep us posted!!!
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