Hi Robynne,


I told you about my daughter a while back. You suggested to me that she get another swallow study. Well we have this is her 3rd one. She passed this one as well. The test show that she can swallow and that she knows how to control the amount of food going down. She also passed with swallowing liquids. She took one spoonful of the liquid and as I was going to give her more she refused. The test also show that when she is eating she tends to want to breath through her mouth, but at rest she breaths through her nose. I don't know if I mentioned before but she is always congested and has been since she was 2 months old. No answers as to why. I don't even give her anything that contains milk.

Do you think that her congestion has something to do with her not excepting liquids or is that she remembers how painful it was to drink?


Thanks for any suggestions you may have.

Ada

oops! Sorry I didn't mean to

Hi Ada:

First of all, how much of the thin liquid did Gabriella consume during the MBS study??? Did she take more than 1 or 2 sips??? I need to know more about your study because nothing is adding up. I realize she has had 3 studies, but it all depends on how they were performed, when the fluoroscopy was on, did they look at her at the beginning, middle, or end of a feed, did they use a cup, straw, syringe, and was endurance taken into account?

I believe the congestion has to do with her reflux. There is a reason she will not drink liquids and I think something has been missed. This is my personal opinion though. Regardless of what they saw on the MBS and because of the congestion, I absolutely would try thickened liquids with Gabriella.

Robynne

Hi Robynne,

Gabriella did not consume much of the liquid. I was giving it to her with a spoon and after the 2nd spoonful was given to her she totally refused to take another. She just wouldn't take any more. The other two test were done with a syringe. I really don't know how many things they look at but I know there was a doctor there looking at the screen as Gabby is eating and drinking.

Gabby hasn't been taking any meds for more than a year. Her GI doesn't even think she needs it. I was told by a natural doctor that she can not digest casein so that is why I took her off of all dairy products. But it doesn't add up because when she was an infant she was taking Elecare the entire time and now she has been off of all dairy for a very long time and she is still congested. Do you think I should talk to her GI about scoping her?

Thanks.

Ada

Ada:

I'm have been biting my tongue here, but no more. 2 spoonfuls of liquid does NOT mean she has a normal swallow on thin liquids. The fact that she shuts down and doesn't drink at all is a HUGE red flag. The congestion is another red flag. Using a syringe if she is crying will not simulate a normal swallow. She has not been on meds for almost a year. My recommendation would be try to spoon feed her thickened liquids and go see a GI. An endoscopy might be a very good idea, but the GI has to make that decision. I am very worried about Gabby...she needs the hydration and you have to determine the underlying cause. Did the therapists watch her eat some food after the fluoro was turned off to listen for increased congestion????
I wish you and Gabby were in Texas. I'd sure love to see why she isn't drinking. :sad3:

Robynne

Hi Robynne,

I wish I was there too at this point. I am extremly frustrated and just want my daughter to drink like a normal child. That is another frustrating thing. We can not make Gabby do anything that she doesn't want to do. If it was not force feeding her this stuff she will not take it. Holding her down doesn't work or tricking her to take it doesn't work either. So were do we go from here? She has a feeding tube were all her liquids go through. She was like this even on meds. She was on meds. for almost one year and she still didn't sound different. That was the point were she was at her worst, actually. She was vomitting so much and she had such bad bowle movements it was just a really bad time in all our lives. Since taking her off the meds she started eating mashed foods and the vomitting stopped. She really doesn't sound any different after eating. She sounds the same all the time. After eating not eating it doesn't matter. She has a GI appt. next month and I will bring that concern up to her. I will try thickening her liquids to see how she does. That has been my ultimate fear that she would need to be scoped again. Gabby is a very hard stick and we all suffer when she needs anything done. But if it is to find out why she doesn't want to drink we have to do it.

Were in Texas are you? Do you know of anyone here in NJ or near by that you can refer us to. You sound like a passionate person and I think that you would probably get down to the bottom of what is going on with Gabby.

Ada

Hi Ada:

I am in Plano, TX which is in the northern Dallas area.

I am assuming Gabby does not have a Nissen fundoplication if she can vomit, or else she has loosened hers significantly. Has she ever been tested for food allergies? The diarrhea and vomiting are red flags. I'm glad she has a g-tube for hydration purposes. When a child will not drink, it is typically because there is something wrong. Dysphagia means difficulty swallowing. Solids such as mashed foods stick together as they go over the airway. It is typically the liquids that are aspirated. Think about when something "goes down the wrong pipe" as we say. It is usually milk, water, juice, wine, etc. It is not usually mashed potatoes, bread, or other solids unless you haven't chewed them up properly.

Let's not start with the scope. I would start treating her as though she has dysphagia. In other words, thicken liquids and feed her from a spoon. Have you ever tried a honey bear cup? Look up Talk Tools on Google. I would try to get thickened juice to her mouth with a honey bear straw cup. She doesn't need to suck....you squeeze the bear cup and the liquid goes out of the straw into their mouth. I have had great success with this tool with many of my patients. You can make your own by emptying a honey "bear" container out and going to Home Depot to buy straw tubing to fit into the spout. You use this as a squeeze bottle for thickened liquids (for little ones who do not know how to suck and who may be aversive to drinking). It is worth a try! :drinkalot:

Robynne

Hi Robynne,

Yes, the vomitting and the diarrhea was really bad. I don't know were I would be today if she was still going that route. She has not had a fundo, thank God, I have heard horrible stories with that.

That is some great advise that I have not gotten from any of the Speech therapist that she has had. I am going to try that. I have also set up an appt. with an ENT to see what else is going on in her sinuses that we don't know about.

Thank you so much for your help and guidance with my situation. I have lost all hope in the medical community and it helps when someone shows that they really care about my daughter as much as I do.

I will keep you posted on the cup and with the ENT appt.


Ada