AVM
My son can’t chew or swallow very well he’s ’s having a very very tough time.
He gets mad in the long term care coz he can’t eat solid food .His food has to be pierade and tomorrow I have a meeting with the speech pathologist .
I don’t know what to do , should I let have solid food or still have his pierade, he would swing the tray off the table coz he doesn’t get eat solid food, I don’t know what to do
Hey @Woodstock ,
I’m Merl, a member of the modsupport team. Prior to my own health taking a dive, I worked in supported care, so I have ‘some’ knowledge regarding nutritional care, but by no means extensive knowledge. One young client had ‘milkshakes’ for meals. They were nutrimental supplement shakes, but he thought it was ‘cool’ to be having a milkshake. It became his ‘treat’.
I know for some patients inhalation of food can be a major issue. I knew of a lady who had a port in her abdomen for her nutrition to avoid this, but she had numerous issue with infections. Each case would need to be assessed individually to be sure their individual needs were being met and the individual’s risk factors were being taken into consideration.
I would strongly suggest speaking to your medical team as a whole. The speech pathologist may have a network of specialists, but if they don’t, someone within your son’s care team should know of a dietitian or nutritionist that may be able to assist. Even if it’s to help put strategies in place to try and manage around it all. Also, some medicos can be laser focused on their specific specialization, but lose focus of the whole person, the patient. Often not seeing the non-clinical impacts of it all. Some need to be told “We have an issue here…” Most hospitals also have access to social workers, often they will know of the services available within your local area. So linking in with them can be useful, both for yourself and your son.
Hope it helps
Merl from the Modsupport Team
Sorry to hear the challenges your son and you are facing. How old is your son? I do have to reiterate what Merl said, in that the specialist are really good at what they do. A more holistic approach may be required in considering the cumulative impacts of the challenge, and if there are ways to mitigate the impact. Hopefully you are able to make some progress with the speech pathologist. Take Care, John.
Hi @Woodstock ,
I am sorry that your son is having a hard time right now. I know that you want to do anything you can to help him and I understand how frustrating it can be to not know what to do. I will just reiterate the advice already given by Merl and JD and say please stay in close communication with the medical team. Aspiration pneumonia is a serious risk for some patients with chewing/swallowing issues. Speech pathology should be able to further assess this risk and give guidance on his needs.
My son refused to eat in the hospital after his craniotomy and it was very hard for us to see him like that. We had to just keep trying different ways to encourage him and eventually he came around. Your son’s team should be able to come up with some solutions for your son. You are doing a great job and I just wanted to say as hard as things are now try to stay positive and make sure you are taking care of yourself too.
Best wishes,
Brandi