Weigh loss in icu

[Nawalsaleh]

My dear daughter 21 years old is still in the icu . Still can’t move or talk . She sometimes opens her eyes when we call her name. I noticed that she has lost alot of weight . She is only skin and bones now. She is on a special diet many years ago but has never been this skinny. Even her nutrition is very upset with her weigh. I’m really scared as she is loaded with lots of medications that are too much for her weight. Still she has daily seizures, new ones that I haven’t seen before admission to icu. I think they are related to her condition and medications. Please do you guys know any one who has gone through such weight loss and seizures? Any comment is appropriated.

[Sepsur]

It’s really important to emphasis that the treatment I was given enabled my body eventually to fight back & survive.

I lost a considerable amount of weight, maybe more than 1/3 of my body weight. My hair fell out and all of my toe & fingernails shed. Under extreme duress and exceptional circumstances, when the body needs a massive injection of protein, it will convert muscle before fat. It much easier apparently. Some people lose 40% muscle in first ten days of being on life support.

I was touch and go for nearly 12weeks.

I kept picking up virus in ICU, including CMV, MSSA, VRE & glandular fever.

The treatment and effect of the medication sometimes felt worse than the fever.

I fitted frequently off one drug and assumed I was having mini strokes. I would randomly lose ability to speak or move. I would lose consciousness and fit, bite my tongue etc etc. Sometimes I felt ‘locked in’ - losing even the ability to blink to let staff know that I was aware. Other times I would vomit like exorcist. I remember thinking, “ I’ve survived all this and now I’m going to asphyxiate on my own vomit as it pours into the hole left by my trachy”. It was scary but once I connected the drug to the symptoms- I refused the treatment. In hindsight the ICU dept. were between a rock & a hard place. They had struggled to help me survive for 3 months and I was belligerently refusing to take a specific drug to fight off another infection.

18 months on - I am well at present - best wishes to your daughter, encourage her to do as much physio as is prescribed - when appropriate

[Nawalsaleh in reply to Sepsur]

Thank you so much, glad you made it. I love reading brave survivors stories.

[tessauk1]

I lost a lot of weight and had many seizures while in ITU. It’s now 4 months since I came home and I’m grateful to say I haven’t had any seizures since.

[Nawalsaleh in reply to tessauk1]

That’s a bless, good news. Thanks alot.

[Videodragons]

I lost an amazing amount of weight in ICU (9 weeks). I think everyone does – it's just the immobility. After six months or so I was back to my normal weight, though it took a bit longer to get my strength back. Your daughter may be offered a food supplement such as "Ensure" to help with all of this. When she is discharged, ask her GP about physiotherapy and rehab. Good luck!

[Nawalsaleh]

Thank you, hope you are doing well now. All formulas contain soy protein which increases her seizures.

[Offcut]

I lost over 3 stone when in ICU for 32 days. I was told that it will take the muscle first before the fat and it can be around 2% of body weight a day while in ICU. I hope all goes well for all of you?

Be Well

[Nawalsaleh]

Thank you for your reply, so it’s common for icu patients to lose weight.