Scared my partner is going to starve or die of dehydration in the hospital

[SpinachHands]

I'm really scared my partner's going to die of malnourishment or dehydration in the hospital because they don't know how to treat my partner's MCAS.

Their MCAS has been getting so bad the past few weeks that they've been severely reacting to all food and even water. The dehydration and malnutrition was getting really bad, so even though we really wanted to avoid hospital where they have been bedbound for over a year, we didn't have any other options. They've been really good with my partner's ME at the hospital thankfully, even got us a private room in A&E.

Unfortunately none of the doctors seem to know anything about MCAS. I've desperately been trying to get private or NHS doctors who understand and can treat MCAS or consult, but noone is available soon or can help. The specialist that diagnosed them and prescribes their usual MCAS meds (ketotifen, Montelukast, sodium cromoglicate) has said she can only consult if the hospital request and pay for it, which I doubt they will. We know there's other meds they could try. We don't want to try any treatment without someone informed on MCAS advising though- where they are so sensitive, the wrong things could make them really sick. They're getting so thin, they're barely tolerating the IV fluid at the slowest rate it'll go.

We're just really scared, and don't know how to get their MCAS better before they starve. I don't think the hospital does either.

 

[southwestforests]

Living four thousand miles away and having no personal experience with having MCAS, I'm a bit short on ideas.
Definitely see the stress and anxiety, don't know what to offer other than to let y'all know that I care.

 

[Seadragon]

@Countrygirl Not sure if you have any ideas on how to get them some help here? Hope you don't mind me tagging you but you helped me out two years ago.

@SpinachHands

 

[sb4]

Would tube feeding help or at least IV saline?

 

[Rootoo]

You and your partner are in my thoughts, SpinachHands.

Unfortunately, I don’t have any suggestions that would help you both immediately.

Have you tried any of the following for sources of MCAS information/support?

The 25% ME Group (nationwide UK support for people with severe and very severe ME/CFS)

Science for ME (an international group of people with a science background who have ME/CFS, who care for someone with ME/CFS, or who have an interest in it)

The Bateman Horne Center (has fact sheets for people with ME/CFS and their carers. I believe that there is one for ER admission)

 

[katabasis]

Have you tried omalizumab (zolair)? That's probably the other major MCAS treatment that I didn't see you mention.

When you say that she can't tolerate food/water or IV saline, can you clarify the symptoms? Are they anaphylactoid or just things like nausea, pain, itching, etc.? Having a mast cell reaction to IV saline sounds kind of unusual - not saying it's not possible, but I have to wonder if there's more than just MCAS at play here. It might make sense to get blood testing for tryptase and/or serum histamine, just to see if the extent of mast cell involvement matches the severity of the symptoms.

Does your partner have any signs of infection or even just dysbiosis? Maybe the mast cells are being aggravated by the things they are essentially designed to fight. If there are a lot of gastrointestinal symptoms, maybe something like Rifaximin (which is often used in IBS because it tends to spare more 'good' bacteria) would be helpful.

Endocrine abnormalities can also affect mast cells - for instance, Corticotropin Releasing Hormone (CRH), which is itself released in response to stress, increases synthesis of mast cell mediators, which is why MCAS is often made worse by stress. It might be a good idea to do some endocrine bloodwork to see if this is a factor.

 

[junkcrap50]

You have a right to be concerned. Lost my grandfather to kidney failure after an easy routine surgery because he got dehydrated and then given the wrong fluid infusions. Parent also had surgery and was complaining of thirst and dehydration - other parent (an MD) - had to basically teach the hospitalist about fluid management. In the end we got our way because we wore down the hospitalist & he would give anything to stop our complaining and teaching. This was in the US at big research hospitals.

Make sure they're drinking and consuming salt. Sneak it into them if you have to.