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

Fiona59 · Jan 18, 2005

I don't know what its called in the US but we used so much of it in LTC that it can't be that expensive. "thickit" was how it was pronounced and its a white powder that is stirred into fluids, chart is right on the can.

Have they tried pureed food. Can do it at home using a hand blender.

Also a visit to the family doctor is in order for his follow up and recommendations.

nursegoodguy · Jan 18, 2005

That poor baby!

As you already know be careful when giving advice and encourage them to seek out a better health care provider who will explain what is going on and can give them medical advice they need.

Aspiration is a life threatening condition.

There has to be a problem causing the kid to aspirate. They need to take him to another pediatrition and if they aren't satisfied take him to another still til they find out what is wrong. Is there a childrens hospital where they are? Are there any organizations who will help with the cost of thickener for his fluids? If he's aspirating on thin liquids then he's got to have it thickened. When I was a kid we couldn't afford glasses and I think it was the lions club or shriners that bought my first pair of glasses. Maybe there is a group like that where your friends are?

Be sure to mention with thickeners you can't just have a recipe that works in every type of fluid. Different fluids, consistencies, temperatures all thicken differently and sometimes they get thicker as they sit. You really have to go by the consistency as you mix.

So you mentioned Speech Therapist, is he getting therapy? Do they know why the kid is aspirating?

Are the parents trying to monitor "how" the kid is drinking? They need to monitor every sip he takes and if it were my kid I would monitor him, encourage him to take small sips and tuck his chin down then swallow.

I hope they get this worked out for the poor baby...

It's emotionally hard enough sometimes to work in geriatrics I Know I could never do pediatrics! A big Thank You to the Nurses who do!

nursegoodguy · Jan 18, 2005

If you google thickit you'll find online medical suppliers and what I saw was definitely not as expensive as what you quoted!

begalli · Jan 18, 2005

I wonder if this poor little thing has a tracheoesophageal fistula. It can be congenital, but you'd think they would have found and corrected it before 4 years old.

Like nursegoodguy stated, you do need to be careful about what you tell the parents. Don't go out of your scope, even with friends. It's very admirable of you to take such an interest and concern. :kiss

I agree that they should search until they find the guidance they require to help their child lead as normal life as possible.

Home Health Columnist / Guide · Jan 18, 2005

someone forgot to include nutritonist or homecare nurse visit.

early intervention programs in your school district should have a slp-speech language pathologist to evaluate and follow this child too.

tell your friends to ask for in-home referrals re above if covered under insurance.

resources:

nectar thick liquids (includes thickeneer products + company contacts)

try to see if thickener covered under insurance with letter of medical necessity as needed to treat specific condition---cheepre than one er visit.

to thicken or not to thicken??

swallowing problems and nutrition

what is a swallowing disorder?

families dealing with down syndrome: how to thicken diet

groups.msn.com/ familiesdealingwithdownsyndrome/howtothickendiet.msnw

it's tough to swallow

medical article diagnosis, tests, treatment options:

emedicine - swallowing disorders : article by segun t dawodu, md ...

hope this helps!

akcarmean, LPN · Jan 18, 2005

WAs the Dr. just the one who did the test?? IF so they need to speak to the speech pathologist more and follow up with their pediatrition.

Angie

lovingtheunloved, ASN, RN · Jan 18, 2005

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?

doozie12 · Jan 18, 2005

Hi

Sorry to hear about your friends child. First your friend needs to choose a different DR for her child one that deals in gastric problems and will consult a respitory doc as well. This problem should have been caught long before now but that is neither here nor there. Did they have a PCG witha PH probe if not that that may be the next test they need to do. They need to ask if he is aspirating when he is drinking the liquid or is he refluxing and that test will tell them. If he is refluxing there are meds that may be given to help with the reflux and also a surgery (Nissen Fundoplication). My next suggestion might be if the thicking agent is too expensive she may look into the dhs services provided in her state to help help with the cost maybe the wic program and the hospital should have a social worker there to her her find resources to help with the childs medical. She also may try to use baby rice cereal in liquids it really doesn't have a tasste and she can add as much as she needs to make it thick enough for him. Another idea is to talk to the Peds nurses about a good dr that deals with the childs problem they are a very good resource as to which drs are the best they work with them on a daily basis. And I agree with the others try to stay in your scope but let them know that there is hope and point them in the right direction to get it. I just say this becuse they are probably grasping at straws and will take every thing you say to them as gospel and if you say something to them that is wrong or even phrase it wrong they may hold it against you and might hurt your friendship which would be a shame since you are such a caring friend and kutos too you for looking for them some help. another idea about the thicking agent is maybe contacting the manufacturer directly and telling a supervisior the problem with the cost and see if there programs which might off set it through the company or if the company knows of any insitutions that may help them.

a peds nurse:rolleyes:

CCL"Babe", BSN, RN · Jan 19, 2005

You would be suprised at what an insurance company will authorize, if it keeps the patient out of the hospital. Most insurance companies have case managers. If your friends call the member services number that is usually located on the back of the card and ask for case managements services they might qualify for case mangement services. If no one orders or asks for such things as nutritional consults and speach therapy to help with the aspiration problems they won't get them. There are also surgical options for severe reflux.

BittyBabyGrower, MSN, RN · Jan 19, 2005

They also need a good case manager or social worker....I am sure that they qualify for more aid than they can imagine.

We have used that thickening agent at work...IMHO, most of the time thickening agents are just a time buyer until they need a fundal and or a GT, esp. if he has been aspirating for a long time. They need a peds GI doc first of all and a good pediatric surgeon. I know money is always a factor, but if they don't get help for this kid, well, he may just aspirate and die at some point. He is also going to get a whopper case of pneumonia at best.

I hope your friends find help soon!

kae rn · Jan 19, 2005

We use a product called simply thick. Pts seem to tolerate it well, doesn't change the flavor, and comes in convenient little packages. The website is http://www.simplythick.com if you have any particular questions.

k