Help with transition to nectar thick/different cups please AND moving

mightmom13

DD had her follow up swallow study today and pretty much instantly they had the concern for aspiration due to penetration of thin liquids; the decision was basically immediately made that she needs to be on nectar thick for liquids with some other juicy foods (you know like her favorite fruits) taken out of the diet. Were the results the same as months ago and nothing done - yes (same medical community, different location and staff, much better this time except for the SPD kid but we got it done).

Anyway - this feels like a HUGE change - I mean no more straight up water, juice water, or even the occasional almond milk when she will take it. Also switching to straw cups only, which is different than what they do at daycare. I already spoke to them and they are fine with whatever needs to be done and I got the menu again to cross out certain foods.

I feel, ok well I am kind of freaking out - am I nuts? If SPD, anxiety, (apparently we now lick everything and sit in the street) along with another huge transition like this move, and doing this all on my own wasn't an issue - maybe not so much freak out. Oh and speech, pending food allergies, ya know.

Should I not drink water in front of her? I live on water for my liquid and she did as well when she would drink/eat - that has lessened since the move, though I did finally get her to sleep even though the schedule is a little off. Thanks for reading, and please any suggestions help - already got a few different yet cheap straw cups to try too.

mightmom13

She only drinks water really so adding in the applesauce is tough - tried it with juice and fail, probably too sugary.

Yes we both do Nalgene bottles, she is always after mine and can drink out of it so I'll have to keep mine up high. If I missed any other response sorry, it took hours to write this per insane kid/floor time this afternoon.

ToastieSimons

mightmom13 said:

She only drinks water really so adding in the applesauce is tough - tried it with juice and fail, probably too sugary. Yes we both do Nalgene bottles, she is always after mine and can drink out of it so I'll have to keep mine up high. If I missed any other response sorry, it took hours to write this per insane kid/floor time this afternoon.

  Just curious, why are you adding applesauce?  You could add simply thick or thick-it.  Simply thick is a gel that thicken a certain amount of liquid to a specific consistancy.  I believe for the nectar pack it is 1 packet to 2oz.  Thick-it is a powder you add to achieve desired consistancy.  The only downside to thick it is that it continues to thicken with time so you have to thicken things as you need them.  You can also buy prethickened juices and water.  You could call your insurance company, they may even cover it because it's a medical issue to prevent aspirating.  Some companies will cover it, others will claim it's medical food.  

You could also buy nectar from the grocery store.  Did you discuss pureeing fruits etc that she loves and adding oatmeal or a thickener to achieve a desired consistency?  I'm surprised noone gave you an "education" regarding thickening. 

ETA: these thickeners have zero taste and work on any liquid, water, almond milk, juice, etc.

mightmom13

ToastieSimons said:

mightmom13 said:

She only drinks water really so adding in the applesauce is tough - tried it with juice and fail, probably too sugary. Yes we both do Nalgene bottles, she is always after mine and can drink out of it so I'll have to keep mine up high. If I missed any other response sorry, it took hours to write this per insane kid/floor time this afternoon.

  Just curious, why are you adding applesauce?  You could add simply thick or thick-it.  Simply thick is a gel that thicken a certain amount of liquid to a specific consistancy.  I believe for the nectar pack it is 1 packet to 2oz.  Thick-it is a powder you add to achieve desired consistancy.  The only downside to thick it is that it continues to thicken with time so you have to thicken things as you need them.  You can also buy prethickened juices and water.  You could call your insurance company, they may even cover it because it's a medical issue to prevent aspirating.  Some companies will cover it, others will claim it's medical food.  

 

They gave me packets of I Nectar powder which is what the adult patients get at my hospital (but in a can), however, said that they have had cases of post-premie's getting necrosis in the GI tract. DD was full term, but had/has GI issues, and I haven't done any research AND her food allergies/sensitiveness so they gave me just a few packets of that. I used one I think in water to see if she would take it.

 

I did applesauce because it was the only thing on the list they gave me to add oz to oz with water/juices. They did mention on the sheet when I read in more detail the rice cereal/oatmeal. No idea they had a gel or pre-thickened anything at the store. My insurance is owned by my hospital and getting worse by the day - so doubtful as I have to fight to get coverage for the anesthetic to her scope post billing.

You could also buy nectar from the grocery store.  Did you discuss pureeing fruits etc that she loves and adding oatmeal or a thickener to achieve a desired consistency?  I'm surprised noone gave you an "education" regarding thickening. 

 

I will have to look into the nectar - I just started on Agave in place of sugar in my coffee and it is awesome, so if that is anything close - may try it after talking to the SLP. She is educated in food and the one who pushed for the first and second study (not any docs, they just signed off on it) so hopefully more education there. Fortunately and unfortunately she will be seeing DD at school this week - I want them educated if possible but I want to talk to her ASAP as well!!

She did well with the pudding and almond milk - but was more mucous after and had to clear her throat more than once - so it may be a nice treat but will have to find something else. Per the pudding (it was cannonball run at the store today with my brain and DD, who never gets to come to the store) containing dairy I have to watch for reactions tonight as well.

 

Thanks!

 

ETA: these thickeners have zero taste and work on any liquid, water, almond milk, juice, etc.

annibes

That's interesting! I actually have not heard of thickening with applesauce. I always check that when they serve it to my thickened kids at the school, because it can sometimes have a thin consistency to it. I've had to thicken some puréed fruits at lunch time.

I second checking into the thickening agents. Some of them are easier than others. Sit with the SLP and have him/her show you what the correct consistency looks like. I still check every drink with a spoon or a pour before I feed. I don't know if it says this on your sheet, but remember (and this is such a bummer) that things like ice cream and jello melt to thin consistency so check with the SLP for recommendations on those things. Some are more relaxed about that than others (and I'm sure it depends on the child and what the swallow study looked like).