Thursday, March 4, 2010

GI Doctor results

We went to meet the GI doctor today, hoping to get some answers, and boy did we!

We were really impressed with the doctor (Dr. Devoid for you local gals). He spent a lot of time with us, asked many questions, wrote a lot of things down, gave us many things to do, and especially knew a lot about kids w/Down syndrome.

He thinks that a lot of the reason B is uncomfortable is that he is majorly constipated.

I didn't even know.

Evidently going 2-3 times a week isn't good, esp for a kid w/DS.

Esp when it is peanut butter consistency.

And smells like a small animal died in his diaper.

He felt around and said that B was totally blocked up, and that when your rectum is full, and you fill your stomach, it is often painful, and you can't eat.

Makes total sense.

Why didn't Benjamin tell me? ;)

He also said that people w/reflux need to eat more often, and to eat smaller meals. And those meals need to be eaten quickly, as to not exercerbate the reflux. is what I left with:
  •  I have to now dissolve his twice-a-day Prevacid solutabs in water to be sure he gets as much of the medicine as possible.
  • He is taking an antibiotic for bacteria in his gut for two weeks (three times a day). This will help to get rid of the horrific smell that is associated with his gas and poops. (HOORAY!)
  • We're going to do Pediasure instead of whole milk. This will give him extra calories without the added fat (which can cause problems w/the reflux and the gas). Sadly, it is *much* more expensive than milk!
  • He now has to eat four times a day, roughly four hours apart. He's not even really awake that long. So I will have to feed him first thing (literally) in the morning, and then feed him almost right before bed. And I will have to shift his nap up a little so I can fit in an extra meal.
  • I have to add 1/2 capful of Miralax to his Pediasure twice a day. I had to give him a baby enema twice today to intially clean him out, and then the Miralax will work from there to keep him regular. Evidently he needs to poop twice a day, and it should be no harder than cottage cheese consistency. And it shouldn't smell like death.
So far, so good. The enemas worked, and he seemed to enjoy the (vanilla) Pediasure, even with some Thick-It and some Miralax. We're supposed to try to get him to drink six ounces of water a day, but not sure if he'll go for that, considering he's never really had water (b/c of all the thickening).

His meals aren't to be more than 10 oz at a time (including his milk). I am giving him four ounces of Pediasure at each meal (4 x's a day), so he needs no more than about six ounces of food at each meal. And if he doesn't eat much at each meal, the Pediasure will help with missing calories.

He wasn't worried about B's lack of weight gain. He said that you have to look at things in three-to-four month slots, and if you look at that, B is doing fine. He is still looking great on the Down syndrome growth chart, and that his height and weight are still good. (Today, he was 22lbs, 8 oz, and was 33 inches long.) He commented a few times that B has good fat pockets on him and is not too lean. The worst thing you can do to a kid w/DS is to make him obese--they're already at risk.

We are supposed to see the pulmonologist next Tuesday. Dr. Devoid was *very* glad about this. In fact, he was going to suggest it. We have an endoscopy (upper and lower) scheduled for March 17. The pulmonologist will do the first part, then the GI doctor will do second part. (Dr. Devoid will also run more labs and check bloodwork for any other issues, such as thyroid issues.)

Sooooo.....tomorrow, Andrew is having his tonsils and adenoids out.

I hope the recovery isn't horrid.

Three weeks from today, Thomas will be here!!!

Here are a few cute recent pics:

Matthew holding up our 32-pound (almost) four-year-old with one hand

My third pregnancy at 35 weeks

My sweet Bub with his crazy hair

Enjoying the sunshine

I am *so* very, very thankful for my family, especially my parents and SIL Edie. They have all been so helpful during this crazy time, watching whichever boy does not have the appointment that day so that I am not having to take both boys to long appointments.

I just hope that by the time Thomas is here (won't be long now), many of these questions will be answered, Benjamin will be feeling better, and Andrew will be 100% recovered from his surgery.

That's not too much to ask, is it? :)


Tricia said...

Sounds like you got some answers. That is always encouraging. Check with your insurance and see if the pediasure is covered. When my youngest had to be on pediasure for several years insurance covered most of the cost. Blessings to you and yours.

Leah said...

Just an FYI, but have your pharmacy see if your insurance will cover pediasure if you get a prescription for it. Some insurance plans do. (they do if a child is tube fed!)

Last spring when Angela went back on a 100% liquid diet for several weeks, it was completely covered.

Diana said...

I will be thinking and praying for you guys today! I love you all so much and I am so glad you are finally getting some answers to B's digestive whoas.

Laura said...

I love B's crazy hair! And that is wonderful that you usually only have to take the 'sick' child to the appointments! I know that is SOOOO much easier for you!!

You look great! Not too long now :0)

Laurie said...

Glad you were able to get some answers! So, Dyl is on Prevacid as well as Pediasure, too. They make a syringe especially for Prevacid - if you did not get one, maybe you could ask your pharmacy for one? It makes it so much easier to give the med. Also - Pediasure comes in Vanilla flavor with fiber. That's the one that we get for Dylan...

((Hugs Mama))

Shannon said...

angela, you sure did get a lot of information... i almost had to take notes while reading :0)

i am so glad you finally got answers to help B. i am keeping my fingers crossed it does the trick. we had to give carter pedisure when he was 1 years old b/c he was so picky. he used to ask for pee-sure all day. he loved it!!!

good luck today with andrew... i'm sure everything will be fine. i will be thinking of you!!!

you sure are crossing lots of things off your list before thomas gets here... he will be here so soon!!!!

oh, and i love your belly pic!!!! i think that's all for now... LOL!

Kellye said...

I want to give you just the biggest hug right now because even reading all of that is making my head spin and I can't imagine having to actually put all of that into action...every. single. day....while in the nth hour of pregnancy.

*SIGH* Hats off to you Angela and big hugs! Things will get better...they just have to!

Aishlea and Brandon said...

Hope Andrew's surgery goes well today! And that Benjamin feels much better!! :)

Thinking of you today!

JILL said...

You must be with A right now. Hope that is going well!

Hmm, from 2-3x per week to 2x per day... good for B, not so fun for you. :-)

I'm glad you are getting new suggestions and solutions! (and I feel bad for complaining about just strep throat) xoxox

heidi marie said...

so glad you got an answer and that it was a relatively simple one! hope benjamin is back to his happy self soon!

Gisela said...

I hope Andrew's surgery went well. And FYI...this Sunday's Smart Source coupon insert has two Pediasure coupons in it ($2 off & $1.50 off). You can probably get some coupons on ebay to help defer the cost!