Tuesday, May 5, 2009

One day with no doctors, please?

We have seen a lot of doctors the past few days. Let's see ... for a stats update, Nika is 25 lbs and 32.5 inches tall.

Yesterday morning Nika had a swallow study done. No real reason other than I like to be proactive with my girls. Well, Nika does have some funky swallowing issues, but mostly the reason is that kids with Down syndrome have low muscle tone, which also can affect the way things work on the inside, causing aspiration.

Anyway. Nika is not aspirating, however apparently there are remnants of food that are sticking around in her esophagus after she swallows. The speech therapist basically told us to give her lots of fluids when she is eating to wash things down. I wonder what causes this? The only other issue is that Nika sort of accomodates her swallow by putting her head and chin sort of down and forward. I have noticed this on occasion, but not always. I guess that isn't technically correct eating form, but at the same time, the therapist told me that they try to teach people who have issues to eat that way.

Who knows.

So from here we basically have a lot of work to do to strenthen her mouth. Despite the low muscle tone in her mouth, she doesn't really have tongue protrusion, which seems odd to me. I think I am going to order some of the straws and horns that are part of the Talk Tools therapy. I have also noticed that instead of using her lips to pull food off of a spoon, she uses her teeth ... which is the wrong way to do it. So I have to figure out how to erase two years of incorrect mouth placement and fix it.

Fun times.


Yesterday afternoon, Nika and I went to the dermatologist. I went for followup on my pre-cancerous spot ... and to have a skin tag removed frozen off. Gross. And ouch.

I took Nika with me because I wanted the dermatologist to look at some spots on her. They are essentially like sand paper spots on her thighs and her biceps ... the thighs being worse. She gained another diagnosis ... Keratosis Pilaris. Apparently it is really common in people with dry skin and even more, people who have Down syndrome.

So ... we got some prescription steroid cream for the spots. We were told to use a gentle soap, like Dove, and Cetaphil for a lotion. I wonder what Cetaphil does that Eucerin or Aquafor doesn't do. Either way, the dermatologist said Cetaphil, so we'll go with that. Because Eucerin and Aquafor haven't gotten rid of it.


This morning Nika and I saw the pediatrician to discuss her immunization schedule. Thus far, we have been doing titers to figure out what exactly she is already immune to. I really didn't want to reimmunize her if we didn't need to. I told the doctor I wanted to do it slowly ... perhaps one shot per week. Immunizations make me really nervous because of all the autism accusations ... but I guess it doesn't make me nervous enough to not do it.

So today Nika got her first shot ... Diptheria, Tetanus and Pertussis. The pediatrician is coming up with a schedule for the remainder of the immunizations. We also got a script for her AAI xrays that we need to have done before her ABR.

Phew. I think that is it for now.


  1. holy moly! Your the doctors wallet's best friend! LOL.

  2. Braska has the KP too, per her dermatologist, and Aquaphor has been the best thing for it...and we've tried all that other stuff too. But the Aquaphor, the original vaseline type, not the lotion version, when applied every day has made a huge difference for her, almost taken it away completely from her legs, and it was VERY bad, ankles to mid thigh. I don't know what the summer will bring...they say it seems to fluctuate with seasons.

    Hope you find something that works...it's not the end of the world, I know, but still...I don't like the whole bumps on the legs when we're trying to sport the cute summer clothes, ya know!? :)

  3. Keratosis Pilaris must be what Aden has, we use a steroid cream but sparingly as it gets into their bones, when they are little. We didn’t’ know the name of it, but had the right treatment at lest lol
    My thoughts on the food stuck in her throat, wouldn’t’ that just happen because the muscles aren’t rigid enough to push the food down?
    I’m too scared to give Aden food. This morning before I gave him breakfast I got out of my PJ’s and ready with the phone. I’m getting so paranoid, it’s just too darn scary

  4. everytime i read a post about medical stuff makes me feel im such a bad mom!!!

  5. I teach kids with special needs, and had it explained to me that "residual" food (that kind of hangs around) can be related to trouble forming a bolus (gross, but refers to the way when we eat we can keep the food we chew and swallow together in our mouth, to coordinate it all going down at once). Some kids have trouble managing that, and then may not feel those left over bits in their mouth or throat. It matters, because that can slide down later. Drinks make the swallow happen. Smart kiddo to tuck her chin!

    We blow bubbles, or puff air to move things across the table to work on lips and breath control.

    I love reading your blog, and have lurked for a while! It helps me keep my eye on the big picture, not just the school one. Thanks! :)


  6. great summary of all of the doctors you have seen lately! you are doing a GREAT job of being proactive and getting things done for your kids!!! :) Now i have to go look up "Talk Tools"... thanks for the info!!!

  7. Mayson also uses her teeth alot to take food off her spoon. her OT has has press down on her tongue with the spoon as you are pulling it out of her mouth. It trains her to use her lips instead of her teeth! it works great and she rarely uses her teeth anymore!
    My cousin shelly with ds has issues with swallowing or getting food stuck too. part of it is that his esophagus doesnt push food down like it should so gravity has to do it all for him. chewing food up really fine helps. he has other issues associated as well but that is one he does have too...
    hug that cutie for me!

  8. Must be the time for doctors. Friday Kayla saw the audiologist, Mon the podiatrist, Tues her annual physical, and today (Wed) the ophthalmologist! So I know just how you feel!

  9. You are one busy momma!! Makes me tired reading it. I'm in denial that I'm living with the same busy schedule. Off to the doc this morning:)

  10. wow- thats a lot of doctors!! I might get some info from you about the swallow study. I want Evie to have a general "Feeding study" or analysis. Her aversion to self-feeding or finger feeding has to be caused by something and I am doing a lot of my own research to try and figure it out. We'll see... but I dont know where to go to get professional help here. OT isnt doing anything I dont do.

  11. My brother has KP also. He has it all over his skin. It seems a little worse on his arms & legs, but it seriously is everywhere.

    One of my sisters (non-DS) has it a little bit as well. My brother's doctor said since it looks like it runs in the family as well, that may be why he has it so much.

    His doctor suggested a scrub and then apply lotion to it, if we wanted to. It doesn't really cause any harm though.


  12. ughhh..hang in there. sounds like you are going through what i went through, the first six month of henry's life. get this checked...then this, then this, etc. it literally felt like my life was going to be sitting in doctor offices. but hopefully you will soon get everything checked off and life will return to normal...whatever that may be! ;)

  13. Ahh hopefully you'll get a nice quiet doctor-less week or so now! We have to re-do all Kennedy's vaccines too (chemo wiped them out). We were supposed to start last year but we had other things going on. I worry too about vaccines, and I've argued with our ped about it (a friendly argue). There is now a sign in our peds office saying that the government has PROVEN that vaccines don't cause Autism and if you choose not to vaccinate your child you can find a different ped because they won't see your child. I know that had NOTHING to do with me since I went ahead and vaccinated anyway but I was like, "WOW that's harsh!" LOL

    Your last paragraph cracked me up: She had her DPT and she needs to ge her AAI before her ABR. Gotta love the world of Acronyms! :)

    BTW, can you shoot me an email or give me a call when you have a chance? There are a couple things I'd like to bounce off you! Thanks!

  14. Learning to drink from a straw was a long and ultimatly worthwhile experience. While learning, Sophie would tuck in her chin too. Her ST said it was her way of giving herself extra support (jaw, tongue, or something, I can't reemmber) and that it made perfect sense that she was doing that. As she got better and better, the tucking decreased. So, who knows?