Saturday, April 2, 2011

Losing, testing, no gain

I am writing this post with a heavy heart, a large sigh of prayer and an attempt to control my crazy mom inner voice that wants to freak out.

Brayden is still not gaining weight.

A few weeks ago, we collected yet another set of stool samples...another bag of containers filled with poo.
Those results came back and Brayden is still not absorbing enough.

We did not change the ketogenic diet immediately because Brayden hwas sick with strep and then we went out of town.

Now we are back, Brayden still has not gained any weight.  We changed the recipe for the ketogenic diet, still planning to wean him off; increasing the carbs and decreasing the fat (the fat is harder to absorb). 

Brayden is struggling with malnutrition and I am getting concerned that it is getting serious.  A little over a week ago, Brayden started losing lots of all over his bed covers, the car seat, his chairs.  Then his skin is peeling.  His is so thin (despite the look of his cheeks), bones protruding and causing discomfort.  All tell tale signs of malnutrition.  The past year of his troubling sleeping and misery all could have been because of starving. 
I am not convinced that weaning him off the ketogenic diet is the complete answer...we are half way through the weaning and no change in his weight.  The ketogenic diet has been instrumental in his seizure control.  Since starting the wean, Brayden has started with new seizures, more disturbing seizures, a couple of times that required additional medication.  Thankfully these new seizures happen only a few times a week (still having his "normal" seizures every day).

So I started to panic about the hair loss, skin peeling and seizures.  I put calls into the doctors.
1.  Ketogenic team - Neurologist and Nutritionist who consult with Brayden's primary Neurologist.  They said to continue the course and wean off the diet, paying close attention to changes in seizure activity
2.  GI doctor - increasing the pancreatic enzymes and ordered bloodwork to check the pancreatic levels
3.  Pediatrician - who helps me consolidated and interpret all of the information coming from the different doctors and test.  Order bloodwork to test his thyroid, a possible cause for the weight loss.

Brayden was a champ getting his blood taken (I call and request certain people, so we minimize the sticking).
The majority of the bloodwork came back .  Brayden's pancreatic levels are the best they have been in a really long time.  The thyroid is looking good.  The results are good...which is good and bad for Brayden, if something was coming up wrong then it could be helpful in deciding what to do in order to help Brayden gain weight (i.e. if the thyroid was a problem there are medications that can help).  The discussion for TPN (nutrition via IV) is starting to come up but we are not there yet.

Brayden will continue weaning off the diet, praying that will help...

Oh, it makes me terribly sad to see his hair all over the place.  Is he really starving and he cannot tell us?  How is this compromising his health, comfort, etc.?  Brayden has always had such thick hair.  I joke that God gave him such thick hair to cover up his tiny head (from microcephaly) and balance out his super chubby cheeks.  I constantly run my fingers through his hair, it is just as comforting for me as it is for him...


Shannon said...

Oh Carrie, I am so sorry. This post really broke my heart. I cannot imagine the guessing game you and the doctors are playing. I will pray for answers to come quickly.

MP said...

praying for you all Carrie. I love all the pictures of your trip to Disney World!

Susan Oliver said...

We love you Brayden! We are praying for all of you.

Wherever HE Leads We'll Go said...

I am so sorry to hear this! As moms we cannot stand to see our children hurting. And when they cannot tell us what is going on, it is even harder! Praying that you are able to get some answers. And that you will have peace in the meantime.

I don't know much about TPN, but I think Caleigh from Caleigh's Corner has done it twice (there is a link on my blog). I bet Holly would be happy to answer any questions you might have for someone who has been there done that.