Simply Thick


Introducing Simply Thick, Lila's favorite mixer. She continues to enjoy daily cocktails of prune juice with Simply Thick, white grape juice with Simply Thick, water mixed with Simply Thick, and an occasional chocolate rice milk mixed with Simply Thick. At the ripe old age of 3, I would have to say that Lila is a Simply Thick addict. We have tried to break her of the habit, but every time we do, that mean old swallow study says she still needs it.

We test her on our own every once in a while, like we did last week. Tiffani and I were having lunch with Lila at Chik-Fil-A. As a side note, it's quite comical when I tell the person at the counter that Lila doesn't need a drink to go with her kid's meal. They just look at me like, "What?" And I repeat myself. "No thanks, she doesn't need a drink." They always say that they have to give me a drink, it's part of the meal. Okay, whatever.

Back to last week~ Not wanting to mess up their iron-clad inventory system, I ordered an apple juice to go with Lila's meal. As we were eating, Tiffani suggested letting Lila try the apple juice. I agreed, since we hadn't given her anything without thickener in it for a while. She drank out of the juice box with absolutely no problem. I was glad, but knew better than to get too excited about it.

Two nights later, I was giving Lila her Zyrtek and she started choking on it. I always give her medicine in small amounts, so I thought she would be fine in a couple of seconds. Not so much. First she turned red, then purple. I was trying to stay calm for her sake, while working to get her out of the high chair as quickly as possible. I rushed her over to the kitchen sink, hitting her on the back as we made out way over there. After a couple of seconds she threw up in the sink and while she was very upset, she was fine.

I wasn't fine. I was mad at myself for not being more careful, and frustrated that just two days earlier she had been fine with liquid that wasn't thickened. She's been on thickened liquids for 3 years. Will she always require her liquids to be thickened?

It's not the end of the world if she does, but it's just one more thing that makes her different from most people. Obviously having to thicken everything she drinks is better than the alternative- aspiration. I've had a couple of people ask me about aspiration and what it means, so I decided to look up a clinical definition instead of giving my own explanation, which wouldn't be as thorough.

What is Aspiration and why is it important?

Aspiration refers to fluid or food entering the airway and moving down into the lungs. Aspiration can be caused by food and/or oral secretions entering the lungs while eating or it can be caused by stomach contents moving back up the esophagus and spilling into the person's airway. Either can cause aspiration pneumonia. Usually when someone aspirates they cough in an attempt to clear the food or fluid out of their lungs. Some people with neurological damage resulting in a weakened cough reflex do not cough - this is called "silent aspiration". Swallowing problems resulting in aspiration are more common in individuals with developmental disabilities (especially those with cerebral palsy), in individuals who have had a stroke, and in individuals who are elderly. Frequent aspiration can cause pneumonia and/or permanent damage to the lungs and if left untreated may even cause death.

Silent aspiration- that's what we discovered the last time we tried to wean Lila from Simply Thick. We had been decreasing the amount of Simply Thick in her liquids, and she seemed to be doing fine. We were doing this under the direction of Kelly, our speech therapist at the time. She suggested a swallow study to ensure that Lila was ready to move to non-thickened liquids. The morning of the swallow study, I felt so confident that we would never have to buy another box of Simply Thick again.

WRONG. Lila aspirated on the very first drink. Kelly and I weren't even paying attention to the screen, we were both standing by Lila. When the doctor said that she aspirated, we were shocked. I think we both said, at the same time, "No, she didn't!" And he hit rewind and showed us that she had, indeed, aspirated. She never coughed, never sputtered, never even made a sound. Silent aspiration. Scary. During that particular swallow study, Lila silently aspirated 80% of the time.

Another cause of aspiration is reflux, which Lila also has. Lila is on Simply Thick for two reasons- so that she will be less likely to aspirate when swallowing and to give liquids more weight to help keep them down. Most kids outgrow reflux by the age of 3. Lila hasn't.

After the choking incident last week, I have been thinking about the necessity of Simply Thick in Lila's life and why it was bothering me so much. I realized that I needed to take a step back from the minor irritations:

It's expensive.
It's not covered by Medicaid or insurance.

It has to be special-ordered as no pharmacy in our area carries it.


It may be slight inconvenience to us but it's a life-saver for Lila. Thankfully a very observant nurse brought a potential issue to the attention of Lila's first speech therapist in the NICU. A swallow study was ordered, and it was discovered that Lila was aspirating. She had only been taking food by mouth for 3 days so there wasn't time for permanent damage or the onset of pneumonia.

From the beginning of Lila's life, God has inserted all of the right people exactly where they needed to be. And I'm so thankful. I just needed to be reminded.

Signing off to make more cocktails~



Linda

17 comments:

  1. Kennedy was on Simply Thick for about 2 years for aspiration as well. She used to get pneumonia all the time from it. It was so frustrating! When they finally did the swallow study and figured out what was going on, it was such a relief because at least we could prevent it! Like you said though, it's expensive. I wish insurance would cover it! Kennedy DID outgrow it eventually. She is 5 now and has been off thickened liquids for almost 2 years. We'll be praying that Lila can eventually outgrow it too!

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  2. She's different. We've always known that and celebrated that. I'm just thankful she's alive while they have Simply Thick. Years ago.... hmmm, don't even want to think about it.

    She's a blessing and so are you and I'm glad you've been reminded and are back to being thankful. I always think it's cool when we get those reminders to be thankful after seeing where we've been or what might have been.

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  3. Why am I feeling like my friend Carmen gets hers covered by Medicaid? Hmm. I'm gonna ask her. Sorry you have to deal with this, but I know that you know that perspective tells you it could be many other worse things. Longest run on sentence ever! Muah.

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  4. This post WAS interesting Lady.

    Thank God for Simply Thick... who knew?

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  5. Thanks for sharing. We will hopefully be starting Wysdom on liquids soon and I am sure that we will be using a thickener. I wonder what it is made of and if you could make a version of it yourself to save on the cost. Just a thought. Anyways it sounds like it has been a lifesaver!

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  6. Does Simply Thick expire? I have a an almost full box that we don't need and you are WELCOME to it. I will check it out and see if it's still good...

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    1. Saw this and wondered the same thing.. I have nearly a full box that I'd hate to waste, but its a year and half old. Do you know anything about expiration times on this product?

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  7. Oh Linda I feel your pain because I have to thicken Lily's liquids with Simply Thick too. At least Lila is drinking fine with the thickener. I am in the process of trying to teach Lily how to drink from a sippie cup. It's frustrating at times. My Lily prolonged her hospital stay for her open heart surgeries due to having aspirational pneumonia. Ironically my dad just passed away September 18th form aspirational pneumonia and it was just devastating! You are right about God putting people in our lives that help us when we need it, especially when it comes to our kids! God Bless You and cheers to Lila!

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  8. We use Thick-It for Goldie. I can get it at Walgreens,but it is cheaper if I order large quantities from CVS online. I think in PA I could get Medicaid to cover it, but we don't have a prescription. Goldie passed her swallow study despite almost always coughing and choking when she drinks and becoming dehydrated. I have also had her choke on medicine and I feel so bad afterwards. Its a joke in our house that with 3 kids I never once mixed baby formula and now here I am mixing drinks for my 2 year old! Cheers!

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  9. I feel your pain. We used Simply Thick with Bridget until she was six months old, when she passed her swallow study. Having to order it was a total pain (and expensive), but it did allow her to eat safely, and I think it also helped the reflux. I found a tiny whisk to use to mix it, which was a great help.

    The choking is my least favorite part of parenting...aspirational choking in particular (our oldest daughter had two life-threatening aspirations from reflux).

    Bridget aspirated (with sound) when she was a new baby (hence the thickener) and then also choked often when we moved from pureed foods to more solid foods (she was not passing food to the sides of her mouth to "chew"), and--despite my best efforts--found and swallowed pieces of food wrappers on several occasions. I am now an "expert" in the Heimlich, though even that doesn't take away the feeling of fear and frustration with unsafe eating or drinking.

    It sounds like Lila is doing great on the Simply Thick. Now if you can just ride it out...

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  10. I'd never heard of silent aspiration before and didn't know what happened if someone aspirated too often. John Michael occasionally coughs and sputters after drinking, which always worries me, especially since kids w/ Ds don't cough as vigorously as typical kids (or so I've been told). Hopefully Lila will outgrow the need for a thickener, but until then, I'm glad you have something that will help her not aspirate as often.

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  11. Hmmm...curious that you are a 'follower' on my blog, yet I've never been over here to visit. And reading this post, I love you already. :) And your sweet baby girl.

    Yes. Though we never had aspiration issues at our house, my oldest daughter enjoyed the benefits of a fully liquid diet via her g-tube for 5 1/2 years. A blessing. Obviously. And so many times felt like a curse. And yet she is alive and healthy and sassy and lovely today. Thanks to that liquid diet back then.

    It doesn't mean forever. It just means for today.

    Blessings, Dear Momma! And stop by more often!
    Karin

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  12. Reflux may trigger the baby to cry but in order to prevent it, there are ways to follow such as keeping the baby upright after feeding, using wedge pillows and trying not to lie the baby after feeding. In a way this can help to stop the baby crying.

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  13. We jsut got the diganosis of siltently aspirating. I have to order Simply Think unsure how much to order for a week month so on. Any info would help. jennandandy@hotmail.com

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  14. Hi,

    I came across your blog while researching if Simply Thick has a shelf life. I have 28 4 oz packages of the "Honey" consistency. I have had them for quite sometime however seeing as how expensive they are, I hate to toss them. Please let me know if you are interested. I will be more than happy to pass them on.

    Andrea

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  15. An safer way to test if she is still aspirating would be to use distilled water or sterile saline. If the child gets a fever afterwards, she is aspirating. And the saline or water is not a foreign substance so it won't cause lung problems. I would also brush the teeth first (germs in mouth, don't want in lungs). Came across you page while needing a pic of simply thick for a book for my son to show him that sucking his thumb makes him need thickener. Hehe.

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  16. Hi there, I came across your blog while looking up thickening and silent aspiration. my daughter has vocal cord paralysis, hence she aspirates and we use simply thick. i was trying to figure out if we could start trying to decrease the amount slowly.

    You have a very beautiful family! Thanks for sharing and talking about your wonderful life.

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