Wednesday, August 3, 2011

Failure to thrive?

Failure to what now??? That was kind of my surprise when we visited the GI specialist last week with the boys. I thought it would be a quick 15 minute trip but turned into a two hour sit and figure out what to do next.

Both boys were diagnosed with "failure to thrive". This is apparently a fancy term saying that the child is not growing as expected. Seriously, who makes up these terms? you couldn't think of another way to say underweight/underheight? Well that will be another discussion.

Neither boy has ever even been close on the growth charts, not even when you subtract the three months that they came early. Not even close. But apparently Alex has fell completely off even his own curve. Now instead of going up or even hanging on to his own growth curve, he has taken a downward turn in both height and weight.

I guess I'm still pretty surprised. The boys (knock wood) have been so healthy. Yes I know that they are little, very little but what do you want when they came at just over a pound and a half in this world.

I guess I was thinking they've GAINED a solid 18 pounds since birth, thinking that was enough. Lets face it, their daddy and I are not giants so they were never ever going to have a chance to see the top of the growth chart, maybe not even the middle.

Ofcourse when ever you hear "failure" related to your child, you automatically feel guilty. You're the parent, you're the one who's responsible for how they are doing. How could I not even have an inkling something was wrong. I walked into that appointment like I do all appointments lately like "see my boys, look how awesome they are." They had such a tough start but look at them now. Well I still feel that way, now just knocked down a few pegs.

The dietitian started asking me about the boys diet. Again, feeling a little smug, still not getting it, I start naming off all the whole grains, fruits, veggies, turkey dogs, soy cheese sandwiches, organic chicken nuggets. She immediately asked where they get fat from their diet. What now? fat? Well certainly they get some. They get some from their soy butter, hmmm what else she asks? Well.....I don't know. As a parent you think you're on the money when you focus on the healthy stuff. With Spina Bifida and mobility impairment, every one stresses this even more. He can't burn off calories as easily and it would be much harder as he gets older to move around if he's overweight, so you focus even more so on nutrition. I wasn't purposefully depriving him of anything, just focusing on the fruits/veggies/grains as much as we could and the boys love it.

The biggest challenge is perhaps all of their food allergies. The dietitian commented that most two years olds are getting fat from whole milk, cheeses, even the occasional ice cream cone. My boys are allergic to everything dairy. Their most recent allergy tests show on a scale of 1-6 allergy classification with 6 being the most severe, they are a six. They aim high my little buggers. Someone might have mentioned to them this was not the high number they want to shoot for.

This means they can't have anything with any milk or milk components in them. No butter, no cheese, no ice cream, no anything that says it has "whey, casein, non fat milk" the list goes on but I won't bore you.

If however you a person reading this and having similar struggles, I found these articles helpful and maybe you will too. Ingredients to look for/avoid
and recent study states children taking longer to outgrow food allergies but still have hope:

In addition to this they are also allergic to nuts, eggs and to a much lesser extent even soy. We've been doing soy products on the advice of their allergist because its much lower on the allergy list and hey, they have to eat something!

So we came home with soy based pediasure drinks and a recommendation to increase their dietary fat. We have to check in with the nutritionist in a month to report specifically Alex's height/weight. If even on the high fat diet, he makes no gains in height or weight over the next month then the talk will be about getting a consultation with endocrinology to see about growth hormone testing. Yeah, I was thinking that we needed another specialist, ha! no but seriously if someone is reading this and has any information/experience with this, I would love to know. I have no idea what to expect in this regard.

He is currently 27 inches in length and 19 pounds. His brother is weighing in a bit heftier at 20 pounds but 31 inches long.

Honestly my gut is telling me that I just have little guys and that there isn't some deep dark secret to uncover or something else to be treated for. Obviously if there is something wrong, we want to know and address it but I'm hoping my gut is right on this one.

All of this would be so much more straight forward if it was as easy as that. Feed little people (ooooohhhh my neighbors/friends will LOVE this inside joke) more calories and fat, Little people gain and every one's happy, story closed.

BUT our lives and specifically our boys lives never tend to get away with straight forward or boring. We started the new high fat diet just a week ago and already boys bodies are NOT happy. I have coughing, restless babies during naps and night time, even smaller appetites than usual, which then gave way yesterday to Alex throwing up right after dinner. He keeps coughing like he needs to get something up, I can hear the gurgling even when nothing follows. He's in such a good mood UNTIL he tries to eat or drink something and/or lay down. Sound familiar? We used to be experts at acid reflux. The boys graduated from all of their medications eight months ago. For those happy people unfamiliar with the world of acid reflux, guess what triggers symptoms? yep: fat. Now I currently have two little people who are not sleeping well, not eating or drinking well and one little person who can't keep the little bit he IS eating and drinking down. Not exactly the trend we are looking for and not a happy Mama does this make. Awaiting for another call back from our GI doctor.

UPDATE: A little more information: Apparently the hospital scale showed Alex had actually LOST weight, about four ounces in the last 5 months. I don't understand because our home nutritionists scale shows he has gained, albeit VERY Slowly averaging just over an ounce a month (seven and a half ounces over five months to be exact). Its not great, they like children this size/age to gain about five ounces a month on average. Luckily our nutritionist is awesome and she contacted the hospital one to confer. They came up with an agreeable plan with every one. No more shakes for now. Let Alex's body calm down and gradually increase his calories by about 100 calories a day by using the foods he already is accustomed to (soy butters, olive oils) its just a tablespoon using one of those. When his system is settled, we'll try adding an ounce or two of the shake in his drink and see if he tolerates it. If so, we'll gradually increase that amount. No reason for dramatic gains, just needs to go in the right direction. Now the hard part: just waiting for me to give him something that he can keep down and be my happy boy again!!!

And because I HATE to leave a post on a downward note I will be back to post new sweet pics of my littles after I try to get them settled again. Looking at them always puts ME in a better mood :)

 Nicholas is NOT a fan of finger paint. 

 oh Nicholas will kill me for this one day.
for clarification, its a smock, not a dress :)

 Alex however doesn't mind a bit

No Nicholas doesn't have three hands, 
just doesn't like to cooperate so well

I've decided just because you have some fancy graph or chart or even initials after your name 
you don't get to have the final say
on whether a person is thriving or not!!!!


Lisa said...

I hate the whole failure to thrive stuff that seems to get thrown at our preemies so much. The boys definitely look healthy to me and when you consider all of those food allergies, what's a parent supposed to do? Poor guys now so miserable just to boost their weight! :( I hope the dietician can give you some better options that helps them not be so miserable as they try to pack on the pounds.

HennHouse said...

I love your last line. So, so true. And in my experience, your gut is almost always right--even if it doesn't line up with a diagnosis.


Jamie said...

You did nothing wrong and your boys look really healthy! I'd say trust your gut!

Joy said...

My friends fullterm 8 pounder was 20lb even at 2 years and he has no allergies or other health problems to deal with, some are just tiny. Were you and your husband petite toddlers?

I have tons of food allergies myself including dairy and nuts. Does coconut work for the boys? It is not a nut and is high in calories. They now sell yogurt and ice cream from coconut that are really delicious if they would work for you.

Jenny said...

I hate the failure to thrive label as well. How can you not feel like a failure?

Your boys do look healthy. I hope it works out.

My daughter had serious feeding issues and this website helped me find the help we needed to get her eating and growing again.

Best to you all.

Raising Jessa and William said...

I have custody of my niece and nephew. My nephew was labeled as Autistic when it was really long term Failure to Thrive. (I figured it out from massive research not the doctors or the school.) I started working with him and he is improving. One of the things I've found out with Failure to Thrive that sometimes boys will develop Failure to Thrive due to "psychological issues". Be blessed that the doctor said Failure to Thrive instead of Autism. That would have been a long battle to overcome.
My family has massive dairy allergies and we're stuck with goats milk for the first 6- 10 years of our lives. (I still don't like anything that looks like dairy.)