33 pounds.Numbers can be startling.
We knew Aimee had lost weight, a good amount of weight. Yet, somehow I was shocked yesterday, while we were at her Neurology appointment, when I heard the actual figure. Shocked to realize that 33 pounds meant she had lost nearly a quarter of her weight over the last several months, 8 pounds of that in the last 3 months alone. Taking into account her height, this loss puts her BMI at 12.0, below the 1st percentile for her age.
If I was wary about keeping her away from people and thus sickness before, substantially increase that now. After a sickness is completely gone, she slowly regains a normal feeding schedule. Before she gains any ground other germs find there way in and she is losing more weight to another bout of illness. She seriously cannot afford to get sick again before we pad her up to a healthier weight.
On top of this wake up
call, I just learned last week that her reflux medication might actually
lower her nutrient absorption. Thus the dilemma. Option 1: Should we
attempt natural options for reflux control that will not interfere with
nutrients and attempt a slow wean off of this medication? We would hope that
better nutrient absorption will help her stay healthier. However, in
trying natural options, we will inevitably be using the trial and error
method, which means at least a temporary increase in reflux. More reflux
means less retained calories, more weight loss, and potential for
aspiration/more sickness. Or Option 2: Do we first aggressively work to
get her weight up, while protecting her from sickness to our best
ability, knowing that her nutrition is partly blocked by this medication
all the while? Neither one seems ideal, but considering how low her weight is, it seems necessary to completely focus on that. Once weight is up to normal (maybe even a pound or two of cushion weight) we could make an attempt at eliminating this medication.
Now, how quickly can one pack pounds on a child? Let operation speed weight gain commence!
Quick neuro note, we are increasing seizure meds again. Aimee has shown a significant increase in seizures when under stress (including sickness) and has developed a new type it seems as well. May have to increase again if we can get her weight up. I am thankful for the medications that help protect her from these worse evils.
I just wanted to again share the formula that we are using, I try my best to home blend when I can but this formula is a good one...best part, it's less volume of 3 1/2 ounces for 240 calories! The website is www.naturesonedirect.com
ReplyDeleteAlso, as far as weight is concerned, I have come to a decision that even though Elizabeth is not on the charts for her weight, she looks good, she looks healthy and not skinny, and there is no 4 year old that takes in all of their daily calories at the perfect diet, so I do no expect Betty to do that either. It has been hard for me to let go of our goal number for intake, but as long as she looks good I am comfortable with that.
God Bless you all. In my prayers, Jenny
Thanks for the link. I will definitely check it out. Which one do you use for Betty? We do pretty good at making Aimee's food almost all of the time. Although I have been using formula for trips, overnight feeds (which I am currently running), and other stressful times. I try to make ahead some and freeze or at least keep a few days worth in the fridge. That kinda helps. It is awesome that you are able to do the blends when you have a chance with her now! I'm so glad.
DeleteYou're totally right on the weight. The scale is not the best measure, especially since they don't have much muscle mass to add to that weight. I did feel like she was healthy before and have been concerned about how bony and thin she is now. Just didn't realize how much she had actually dropped. Glad to know that you are relying on your instincts too. Makes me feel better when I argue with the GI doctors to know I'm not the only Mom who feels that way. :)
Thanks for all your advice!
-Rosa
We had good results using apple cider vinegar for reflux. My then 2 year old tube fed son(now 3 and eating orally) took 1 teaspoon diluted in water twice a day. If you are still blending Aimee's food you can up the calories by using very nutrient dense foods like banana, avocado, and pumpkin. I always added some butter or olive oil in the blends too although you have to be a little cautious with oils because they can make things worse if she is aspirating a lot. I don't know if you do continuous feeds or bolus, but a slow nighttime drip can get extra calories in too.
ReplyDeleteI had just recently heard that about apple cider vinegar. We will definitely start adding that in to her day. Is your son still on it for reflux? I also heard that pure, raw aloe vera can help. Haven't researched it yet though. Really no reason not to try them, just nervous to wean off of the meds. Thanks for sharing your success. Makes me more confident to go that route!
DeleteWe are definitely still doing her blends. She does get a good amount of oils with flax, cod liver, and coconut oils, but I didn't know that they contribute to aspiration. :/ Replacing some of her lighter veggies with some more calorie dense ones would be a good option. Thanks! Also thinking of thinning with bone broth instead of our typical water. That is the great benefit of doing a blended diet. No need to make it taste good. :)
We did start her on continuous formula overnight as soon as I learned how much she had lost. Not loving using it, but it is a great way to bump up those cals.
Thank you so much for sharing your knowledge. Experienced parents are such a wonderful resource!
-Rosa
I know I don't have experience in this area, but once you get her weight up, you could try cutting the gluten (if you haven't already), that was one of the major symptoms on the list of gluten sensitivities from the class I went to at the naturopath's office. Grace to you guys, you're doing a great job.
ReplyDeleteBefore removing gluten, please have her screened for celiac. Once gluten has been removed for 6-8 weeks the test is no longer accurate. Start with the blood screening...if she has positive antibodies, a small intestine biopsy will be needed to confirm the disease.
DeleteHi Rosa,
ReplyDeleteWe use the Oraganic Pedia Smart, Dairy, Vanilla. I want to order the chocolate and mix it up for her. She seems to be doing well on it. We are also still using the Complete Pediatric for night feeds because we cannot totally afford to buy all this formula but to also have a backup solution in case anything is to ever happen with the Organic company. Her OT suggested that we just kind of keep her body used to it.
You are all in my prayers and I know that God gave us those instincts for a reason. I feel like the GI and Nutritionist think that because they have total access to a childs diet via the gtube they can then dictate exactly and how much goes in....and it isnt fair. Stick with your own views for your girl :)
Rosa, as you know, both of my kiddos have struggled with GI issues, weight loss, and reflux. There is a possibility Aimee could have small intestine bacterial overgrowth (SIBO). SIBO can cause reflux and reflux meds can cause SIBO...a vicious cycle. Both of my kids are off of reflux medication now because we have treated the SIBO. Here is a great website by Dr. Siebecker (Naturopath - Portland, OR). http://www.siboinfo.com/overview1.html Dr. Lustig (GI) at Mary Bridge Children's hospital in Tacoma diagnosed both of my kids...we really like him. Your family is always in my thoughts and prayers. -Erin
ReplyDelete