FND and swallowing

[mumof2fnders]

hello can you please advise me please my daughter is not anorexic but has a eating disorder. my daughter has chronic fatigue (ME) and a functional neurological disorder (fnd) she cant swallow food only liquidised food. she is now 6 stone bmi about 14. she is in hospital but doctors wont put in a nose feed or a PEG feed to help her as they say her problem is not clinical. she is slowly still loosing weight. will doctors put in a feed if it is not a clinical problem she has been in hospital on a nutritional grastro ward for 3 weeks and we are having a meeting on tuesday to make a plan. can you suggest anyway to convince them to feed her please as she wants to gain weight she eats all she can but has choking problems and is too tired to eat (has been on a liquid diet for 3 years) been through psy and gp and dietitian and they all recommended a peg but the surgeon says no

[BuntyP]

Has she seen a speech and language therapist who can arrange an instrumental assessment of swallowing and give some really helpful advice plus make it more likely the other doctors will realise there is a physical problem?

My friend's son has myoclonic dystonia where swallowing is a problem due to muscle weakness. Their website has some useful advice on how to make eating and drinking easier, such as using a straw rather than tipping liquid into your mouth.

Losing your voice for long periods is quite common with fnd. I saw a speech therapist a couple of years ago, before I was diagnosed with fnd, who helped me with relaxing my jaw and neck muscles as I kept losing my voice for up to 10 weeks at a time every time I had sore throat.

Also, why not take in flasks of really nice food that has been liquidised as the hospital food will taste disgusting. Years ago on TV, I saw a man who had had his jaws wires as he was morbidly obese and he'd put on weight because he kept liquidizing Mars bars and roast dinners, it might be worth a try. Best wishes to your whole family xx

[mumof2fnders in reply to BuntyP]

speach and language have been done and camera tests but they cant see anything wrong hence fnd diagnosis. exhausted local tests thanks for the suggestion tho

[Chingona]

That seems pretty unreasonable that doctors would treat her like that. I hope you are able to change their minds. Maybe you could try to educate them with some if the information on Neurosymptoms.org, so they could understand that it’s a real weakness. I’m sorry I couldn’t imagine having to deal with that with your child. The thing is if you don’t stand up for your child no one else will, as parents we are their advocate.wishing you both luck!

[macmmom]

I’m so sorry you are experiencing this. Do you feel he is trying to call your daighter’s Bluff? As in, withholding the PEG so she will give up and eat more?

I would ask the surgeon what the exact parameters are before she qualifies for this procedure? What are the dangers of putting her in the PEG, are they greater than letting her continue to lose weight. How sick are they willing to let her get before they act. Keep it logical and put responsibility squarely on the surgeon.

Can the GP, Dietician or psy attend the meeting or at least have their recommendations communicated to the surgeon in a formal manner? i.e reports from their evaluations.

I feel for you. My daughter had a extended period of neck down paralysis a few months ago. We sat in the ER, literally with no where else to go. The ER doctor kept saying “we cannot admit her because her issue is not a medical issue, she has no medical need.” My husband kept saying “ok. I understand but that does not change the fact that she cannot move, she cannot go to the toilet, and we cannot help her do those things at home. So...we don’t have to argue about the diagnosis. We are simply asking for help with this current problem. We cannot take care of her, you cannot release her if she can’t walk and use the toilet...so, what do you propose as a solution?” he finally relented and admitted her.

I would focus on that. What are you going to do to help her? Here are the recommendations of others? Why is he ignoring their recommendations. “If you won’t do the PEG, what is your alternative?” Put it back on them. And if they remain stubborn, do you have the ability to go above him and ask for input from a superior?

Best of luck.

[Moses4]

They for a fact can not say it is all FND related. You ask them to prove with facts that this is the cause. Not only that , they are discriminating against her because of her FND and seriously putting her in danger with her physical well being. They can not deny her medical treatment because of her mental illness. They need to treat her medical needs even if it is from FND because it is affecting her psyical health. Go above their heads and report them. I am so sorry your daughter is suffering. It could be a muscle problem in her throat. Take care and let us know how things work out. P.s start documenting everything they say and do with their names , time and dates of service.

[mumof2fnders in reply to Moses4]

they have tested for all sorts and cant find anything clinical. yes have started documenting thank you but they say we lie and they an show proof otherwise that it is all pretending as apparently if she is seen she hides under a blanket (not asleep, or blocking out light and noise bt they assume she must be awake as she is seen fidgeting / turning over) and apparently she is choosing not to eat. they dont believe she is too tired. they have evidence of nurses seeing her doing it all deliberately so my word against theirs. very frustrating

[thinkin]

Hi,

Try asking the FND Hope site for some patient advocacy. If you don't like mithering a consultant neurologist specialising in FND. The trouble is that we need our vitamins, especially B12 and D and she is not receiving proper nutrition it will only make her condition worse.

Good luck. xx

[mumof2fnders in reply to thinkin]

she is now being given b12 and b complex vitamins as was lacking and thiamine have messaged fnd hope thank you

[Moses4]

Yes definitely, I was reading on FND symptoms (because our son has same issues 15 years old) has to do with textures of food. Their gag reflux is hypersensitive and that is why they are pickey) on top of that their digestive system is also the same. So they either have constipation,diarrhea or both. Heavy breads,meats,slimy foods is what are son has issues with. So soft foods like cereal,pancakes,waffles,that without edges, jelly sandwiches, ramen noodles, Season of lie butter noodles, rice ,our son loves Sanyo seasoning rice, of course chips,popcorn,juice, he likes fries chicken drummetts because he pulls of in tiny prices to eat and easier to swallow,of course jellp, crakers like saltine or cheetz, and of course slushies when ever we eat that as a treat, if he it's dessert he will maybe eat 1 or 2 cookies and sometimes not, depending on how his tummy is feeling. With his condition i only give him hummus vitamins because pill form bothers his stomach,also i give him fish oil supplements,if you get vitamins do hummus with xtra d because he is not out in Sun a lot as the can give him headaches and trigger other symotoms. I hope she has a good neurologist as to write down all her symptoms and triggers and tell him. Especially gastrointestinal and stomach problems . I found this out because at times my son would say that certain food textures bother him and he does not want to eat for that reason. Sometimes he would go to the bathroom(and at that time which was in the beginning he did not tell us he couldn't eat it because he would get pains in his stomach and throw up.guess he though we would judge him. I did notice him losing weight and when I came across FNDhope.org i went to the symptom list and it said directly about food texture problems FND'ers.had. How old is your daughter and if you can message me personally by invite why can set up a time to talk and compare. P!us it will be good to support each other and if close in age they can with each other. Thanks mumof2fnders. Hugs my friend🌻🌷also you have 2 peop!e with this.this has got to be genetic. And yes I am angry at the medical community and doctors who treat us like we are nothing of any value as a human because the majority do that.