Thursday, February 9, 2012

Abnormal Blood Work

Allie's nurse called the other day and stated that Allie's organic amino acid blood test came back abnormal.

I received a copy of her blood work yesterday and it looks like this:

"Creatinine" - low
"Anion Gap (mEg/L)" - high
"Carnitine, Free" - low
"3-OH-Butyric Acid, Plasma" -extremely high
"Acetoacetic Acid, Plasma" - extremely high
"20 Ketoisovaleric Acid, Plasma" - high

On top of the report, there was a section called "Organic Acids, Plasma Interpretation".  This is what it says.  "ABNORMAL.  Severe Ketonemia suggesting catabolic state."

Not sure what all this blood work means but I'm not liking it.  The doctor called and had us go in on Tuesday right away for additional blood work and a urine test.  They are now checking her organic acids and checking for sugar in her urine.

I have been doing a little research on her test results but I haven't been able to find a ton of information.  Her doctor won't tell me much until the next round of testing comes back, my guess is he doesn't really know yet what it all means. 

We should get her new blood work and urine test back hopefully on Monday.  Waiting is sometimes the worst part!!!

Overall, Allie is doing good.  She has stopped vomiting since being on the new medication.  In addition, her behavior has improved dramatically.  She still refuses to drink anything besides water but that's why we are thankful for her feeding tube :)

Happy Feeding Tube Awareness Week (Feb 5-11)

Wednesday, February 8, 2012

Speech Therapy Completed

So proud of Allie - she has made wonderful progress with her speech the last couple years.  She went from speaking a couple words to being completely mute.  Due to malnutrition, her brain had stopped developing and she was losing her speaking ability.  In December 2009, Allie received her feeding tube and started getting proper nutrition.  At that time, we enrolled her in speech therapy. 

Since January 2010, Allie has had weekly therapy sessions.  She has worked super hard at pronouncing her words correctly.  Allie and I have spent many hours at home repeating words and working on pronunciation. 

Last week her speech therapist said that Allie is, "age appropriate for her speech".   This is wonderful to hear.  I know there are still some sounds that she struggles with but apparently the majority of the kids her age struggle with it too.  So, her therapist gave me the following options on how to proceed:

1) Discontinue speech all together
2) Keep her on consult - basically meaning that Allie's therapist would evaluate Allie's speech every couple months to make sure she is progressing normally with new sounds, etc.
3) Keep her in speech but reduce her visits to bi-weekly.

I went with option #2.  We will keep Allie on the system and just evaluate her when necessary.  I will watch Allie at home and if I notice any new sounds that are not appropriate, I will have her evaluated right away, otherwise we will evaluate her at our scheduled times. 

Allie is very proud of herself for having completed speech class.  She is going to miss it though because she really liked her speech therapist (Mrs. O'Brien).  We have been so lucky to have so many wonderful therapist for Allie - we are truly blessed.

Wednesday, February 1, 2012

Some Test Results

We met Allie's GI doctor on Monday morning.  We received the final results of her Upper GI Series test, which basically showed there was no obstruction.  The test also revealed that she has inflammation in her stomach and the top part of her intestines. 

At this point, we don't know why her stomach and intestines are inflamed and who knows if we will ever figure it out.  Seems like there are always so many opened ended questions. 

Allie has started a new medication called "Ranitidine".  This medication will help her stomach not produce so much acid, hopefully this will help bring the inflammation down.  She is on 10ML twice a day by G-tube.  We are hoping this helps.

Since being off the Domperidone (Canadian medication), Allie has not complained of as many belly aches.  The doctor did confirm that with the inflammation in her stomach and then adding the Domperidone, it could have caused bad cramping.  So, since she is now off of the Domperidone, we have seen a decrease in her belly pain.

However, Allie is continuing to vomit solid food.  She is doing okay with her liquid, so we are thankful for that.  She still will not drink her milk though - she refuses to drink anything except water.  When I give her a feeding, I cannot put more than 3 oz in at a time because she's crying that she cannot handle it.  So, I know something is funny with her belly - and I'm not convinced the inflammation is the only thing.

Allie lost weight again.  She is back down to 26.2 pounds - that's quite a drop.

We have provided the doctor with a stool sample because Allie has had diarrhea for the past couple days.  They are checking her for Roto Virus, white blood cells and blood in the stool.  Still waiting for the results.  In addition, we are still waiting for the blood work results that were taken last Friday.

The last bit of news is that Dr. Brown wants to scope Allie again.  He is thinking she also has inflammation in her esophagus.  He would like to take biopsies and check for inflammation and eosinophils.  Her last scope was December 2010 so he feels it's time to do it again.  Her endoscopy is now scheduled for February 24th.  I'm not thrilled about this but I do see his reasoning in wanting to do it - it's just hard to watch your baby be put to sleep.

Allie rocking out