Weaning off thickened fluids for dysphagia

[misdee]

Our youngest daughter has leukodystrophy MLC2B . With it comes dysphagia. She has been on thickened drinks since she was just under a year old due to silent aspirations and reoccurring chest infections. She has been infection free since early 2017. She is 3 years old now.

Has anyone managed to wean off thickeners and not have issues? I am going to talk to SLT in the week for input as well but wondered if anyone has any experience.

Would make things a lot easier if she was able to drink normally.

Yes, my son also aspirated and we were on moderately thickened fluids for a good while. He really didn't do great with it but was on an NG tube at the time so wasn't an issue. When we decided to wean from the tube we had to make a decision to stop thickening or he wouldn't take enough fluid. The speech path was happy with plain water which was a lower risk of infection. He does still cough when he drinks but we've never had a big problem and that was 2 years ago.