I'm at a loss...4-year-old on nectar thick fluids - page 2

I have a friend whose four year old son is on 9 asthma meds. Adult doses. He's been in the hospital dozens of times. As it turns out, the kid has been aspirating everything since birth, causing... Read More

  1. by   kidluvinRN
    Poor kid, it sounds like this family fell between the cracks, so to speak, as far as anyone following up with them. This family needs an advocate. Perhaps the insurance co. has case managers, school nurse, even a friend to go with them to the pediatricians so that they can express their needs. ...Personally, this type of thing drives me crazy, why wouldn't this family need to know how to keep their child safe and healthy, and especially since there is a history of aspiration!!!!! I would want a consult to GI, social work, a dr. order for thickener (so that insurance will pay), and ((((Hug)))) for this poor family.
  2. by   lovingtheunloved
    they have an appointment with a pediatric GI doc. In a month. He's been hospitalized enough times that he knows what an IV is and that he doesn't want one. His mom has been able to say "You have to drink x amount of liquid or you have to go to the hospital and get an IV." So he's starting to drink the thickened stuff albeit reluctantly. This family really has fallen through the cracks. The doctors look at their account balance and not the child who will die without the proper treatment.
  3. by   Jolie
    I'm glad to hear that this child will be seeing a specialist soon. It certainly sounds like further testing and perhaps surgery may be necessary.

    In the meantime, encourage the parents to find out the name of a sales rep for the thickening product that they have been successful with. The doctor's office or pharmacist should be able to provide this information. Most nutritional companies will provide product free of charge to those who are clearly in need and lack the means to pay for such items. We do this all the time with parents who need specialized infant formulas, and I've never seen a sales rep unwilling to help.

    Bless you for helping these folks!
  4. by   TracyB,RN
    I agree with the above.... this kid has some major issues going on, possibly requiring surgical intervention....But for a doc to just blurt out no liquids.... he must have missed bedside manner class the week before.UGGHUGH... WIC may be of help...
    Thick It works with just about every liquid, if used according to label directions. I used to work on a rehab unit & we had many pts who needed Thickened liquids, but hated it with water, so we would use Sprite or 7-Up, after giving it a good stir to get the carbonation out, ... not the greatest nutritionally, but at least he took in some fluids that way... anything that melts at room temp should not be used on this child. It must be thickened appropriately... that means no ice cream, popsicles, or shakes, to get fluids.
    There is a company that makes thickened liquids individually packaged... I think it's Resource products, in a variety of flavors, consistencies, & formulas, milk, H20, & juice.
    I just saw an ad while watching the news a few minutes ago for IL residents without insurance coverage... www.RxforIllinois.com?? Maybe AZ has a similar program that would help pay for this boy's thickening agent. What about Medicaid or disability case workers that could point this family in the right direction. They obviously need the help.
  5. by   hmcna
    You may want to check out

    http://www.needymeds.com/

    not sure if they cover other non medications.... but they are a great resource for patient assistance programs for medications.
  6. by   nursegoodguy
    Quote from lovingtheunloved
    Telling them to make sure he has good oral care is not going out of my scope. I'm a CNA, not an idiot. Forgive me for being defensive, it's been one of those "you're incompetant" days.

    They were using thickit, but Nick won't take it. the $108 stuff is the only thing they've been able to use so far. He apparently does fine with regular food, it's just the liquids that he's aspirating.

    They go to Phoenix Children's Hospital. Drive almost four hours to get there. The reason the school didn't catch it is because they are idiots. Their insurance won't cover a LOT that he needs. They have another son with autism, so financially, they are in over their heads. They are teachers. And we all know how much THEY make. They said insurance won't cover the thickener because it's a "food additive." I just can't fathom a doctor saying "Don't give fluids" and walking away. Did he miss the day in med school where they tell ya that you have to have water to live?
    I do apologize if I sounded condescending... I really didn't mean to.
    I know for myself I have a lot of people at work who almost on a daily basis have some medical thing with a child going on. I don't work with children so I usually am quick to tell them to go see the doctor!
    One girls baby had a fever and rash and one nurse was telling her to use hydrocortisone cream... I told her to take her kid to the doctor, it could be scarlet fever!
    I do apologize for imposing my overly cautious attitude.
    It's truly wonderful that you've taken an interest in these people and their child. After all we are all here to watch out for each other...
  7. by   lovingtheunloved
    Quote from nursegoodguy
    I do apologize if I sounded condescending... I really didn't mean to.
    I know for myself I have a lot of people at work who almost on a daily basis have some medical thing with a child going on. I don't work with children so I usually am quick to tell them to go see the doctor!
    One girls baby had a fever and rash and one nurse was telling her to use hydrocortisone cream... I told her to take her kid to the doctor, it could be scarlet fever!
    I do apologize for imposing my overly cautious attitude.
    It's truly wonderful that you've taken an interest in these people and their child. After all we are all here to watch out for each other...
    Don't worry about it. I'd had a bad day with a family member at work who spent thirty minutes yelling at the nurse about how "stupid all your girls are..."
  8. by   Fun2, RN, BSN
    I want to add something to this....

    My insurance told me that they would not pay for a surgery; They said it was cosmetic. My mom dealt with it with her insurance when I was young, and I dealt with it on my own insurance.

    If one person says they won't cover it, go to the next person higher up. Tell your friends to keep going to a superior every time they get a denial!!!

    Does he have a prescription for the attitive? Sometimes insurance companies will be more apt to cover something if it is an actual script.

    I feel so sorry for this baby, and his family. I wish I could help it all go away.

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