My daughter has FND and CFS is there any doctor's out there who really no what doing ?

[Kerriekayci]

Hi my name is Kerrie and my 17 year old daughter was diagnosed with FND and CFS her neurologists has put her in meds and basically are saying there is not much we can do for you apart from that she's on amatriptlin and pregabalin. She has 21 different simptoms I'll name some body paralysis where she looks like she is asleep but can still hear you, functional seizures, memory loss,pain in her head like electronic shocks ,pain all over her body mainly her lower back , can't breath sometimes,looses the ability to talk ,twitches in arms and legs,and body cramps mainly feet hands and face they are only a few of what she does my question is has anyone else been told by there doctor's there is not much else we can do for you? There must be something they can't leave people to live like this as a mother it's heart breaking to watch your child go through this everyday and can't do nothing about it there must be someone or something out there for people living with this disorder or am I just wishing for a miracle

[Hidden]

Ask for a referral to a rehabilitation hospital. It really does help a lot.

[Kerriekayci in reply to Hidden]

Thank you I'm going to book her a appointment for her g.p to see if that can do that for her x

[Junebeatle]

My suggestion would be to start looking into an integrative medicine physician who looks for root causes..I know as a dietitian CFS responds very well to a plant-based ketogenic diet (some of CFS is an imbalanced microbiome in the GI tract) Bacopa Monneiri is also showing promise in fatigue, memory, & concentration in CFS.

As far as FND it’s such an individual thing that works, as we all have different symptoms. I lived highly functional with FND for 11 years raising kids, going to graduate school, and working while managing symptoms with anti-inflammatory diet, daily intense exercise 5 days/week, & indica marijuana. It didn’t get disabling until last year after 2 viruses in 1 week.

I don’t know where you live, but having your daughter tested by Spectracell for any nutrient deficiencies, amino acids, & fatty acids is a good place to start (this will help immune function in CFS), GI effects by Genova to look at gut flora, and also stealth infections (ex. Strep, Epstein-barre, Lyme, CMV, herpes family, etc) Good luck 🍀! I believe there’s hope for her, just may have to look for it unconventionally...mainstream medicine hasn’t quite caught up to what our current modern world is doing to our microbiome, blood/brain barrier, mitochondrial function, etc. Feel free to reach out if you have any ?’s on your journey as there is a lot of snake oil in that field as well. Pubmed.gov is a good place for legitimate research too!

[Kerriekayci in reply to Junebeatle]

Thank you so much you have really helped me I'm going to look into that for her we live in London the only thing she was low on was iron she was tested for all the others came back as normal you said you took indica does it really help you and what part of your simptoms does it help most with as we have thought about this. She has been really bad since it started and she hates taking all these tablets everyday that her doctors have given her x

[Kerriekayci in reply to Junebeatle]

Hi I have started giving my daughter magnesium tablets and she and u have seen a differents in her pain management and a lot of her symptoms have calmed down a lot they may not work for everyone but they have helped her so much

[Spanner46]

Hi Kerriekayci,

I am really sorry to hear about your daughter and it must be so heartbreaking to see. I have virtually all the symptoms except non-epileptic seizures and possibly the blackouts, though since i have had it all i seem to do is gain more symptoms all the time. I too am on the understanding that there is no cure as they don't seem to know what they are dealing with. I have been told that the catchment area i am in, is lucky for me as they have some funds and resources that they are able to offer some treatments to try and make F.N.D. a bit easier to live with, but not everyone will find it works for them. It is the old chestnut of a disorder they don't understand, not enough funds or Neurologists to put the groundwork in to find a cure, but you live in hope that they will.

Spanner 46

[Kerriekayci in reply to Spanner46]

Hi I have been trying my own things in her and have found that magnesium tablets are helping her more then any prescription drug the doctor's have given her I did a lot of research on them and found they can help with loads of different disorders and with chronic pain as they can help with the function of the neurvous system which is a magor problem with my daughter's FND and the chronic pain she gets all over her body and theMuscle cramps she gets she has not had since taking magnesium tablets I don't no if they can help with everyone's FND as everyone is different but what u got to loose there Good for your body anyway so they can't do no harm x

[luhu]

As a mother of an 18-year-old son diagnosed with FND at 15 with several years prior of extreme health issues, I understand the agony of seeking help and answers for your child. I highly recommend this book, Pediatric Psychogenic Non-Epileptic Seizures: A Treatment Guide, as a way to educate yourself, your daughter and your care providers as a starting point. Even if your daughter is not having seizures, the principles apply to FND. I came to be introduced to Julia Doss through connections I made at a conference at Emory University in 2017 where I was fortunate to meet leading researchers and treatment providers in FND. She helped me understand what I should be looking for in terms of treatment for a pediatric patient.

Today, my son is in recovery and reclaiming his life that I was afraid was lost to him forever. We have traveled from one side of the country to another and found help at the Hasbro Children's Hospital Adolescent Partial Day Program targeted to kids with complex medical and mental health histories. Upon arriving, we found that we were not alone. This program was a part of his recovery and wasn't the whole cure. It did lead him, us as his parents and his local treatment team to better understanding and ultimately, he chose to take charge of his health at 17 and went to a wellness program called Pacific Quest in Hawaii. He rebuilt his health from the ground up and reclaimed confidence that he could manage the episodic disruptions to his nervous system, and he uncovered more triggers and accepted that he could own those triggers and do things to manage them. If FND is a nervous system short circuit, then I hypothesize that he did a complete system re-boot. We worked along side of him and had to work on ourselves as I began to realize that we had been traumatized by the whole experience. We did intense family therapy, and learned that we had been through hell together and that we had to learn to trust again that we could live life without the fear that had plagued us for years.

Sending you prayers, hope and continued strength in your journey! Lucy

[Kerriekayci in reply to luhu]

Hi Lucy sorry for my late reply I completely understand how the hole family is feeling I have a 9 year old daughter to and she won't talk about it she sees her big sister going through all this but won't say how it's making her feel I no it really upsets her but she just gets on with it as a mother as u no u are just running on auto pilot all the time u don't have time to break because they are the one going a these things and as teenagers it's harder for them as they can't do all the things there friends are doing and are in so much of there own pain that I feel bad to say how it makes me feel but lately she has been quite good I've started giving her magnesium tablets 1 a day and they have helped her so much as they help with the function of the neurvous system and also with chronic pain her muscle cramps have not happened since taking them and the pain has calmed down so much and she's happy I did a lot of research on them and found that magnesium tablets are so good for many things I have also started taking them for the pain In my back and they do really help I used to have to bath my daughter as she couldn't do it herself most of the time and I have not had to do it for a week now she has done it herself and I think it has something to do with the magnesium tablets I'd you do try them I hope they work for you as they did us I have been telling everyone about them that I no lol xxx

[Hidden]

I have all those same symptoms of my FND. They have gotten better after two years but I still have them and at times still can’t walk or talk.

I strongly suggest cognitive behavioral therapy, Tms, occupational therapy, physical therapy, and cognitive/speech therapy. Oh and EMDR, it’s amazing, my guy is also my therapist so that’s been so helpful.

I also have a vistibluar therapist to help with balance, falling, walking and nausea. I also have divergence and wear prism glasses from the optometrist. Most docs won’t check for this so you need to see an eye dr who knows about convergence and divergence.

Acupuncture and chiropractic work got me back on my feet faster than any meds.

Meds wise: Botox- it was a god send for headaches/migraines. And I’m on cymbalta for depression/anxiety, it’s also been really useful.

My docs for the first 1.5 years were over medicating me and didn’t help much.

Ohhh and the one I can really relate to is I actually hallucinate music, people talking and the such. What I do is have 3 fans in my room one at each side of my bed and foot of the bed. No one know what it is but headphones also really help.

I also describe mine as electric surges. Breathing work, yoga and meditation all really help. Guided ones can get me to focus.

If you or she can journal, my symptoms started after a major car accident and TBI. Then I started falling and stuttering. If you don’t know the trauma, finding it could be a good start.

Bless you and good luck! Stay positive. FND can cause ppl to feel lost quickly.

We’re here for you. I like my in person support groups best if you Can find a tbi group it may be very useful.

[Karen579]

Hi there.

When I read the list of symptoms you provided it sounds just like my daughters symptoms - she got FND just after she turned 12.

It is such a hard illness. We have no doubt in her cause it is Trauma related.

At the beginning the symptoms were really hard to manage and when you finally thought you had got on top of one symptom then another symptom would appear. I would suggest you document all her symptoms (keep a diary or Journal). Any medical meetings you do manage to have take minutes and circulate them to whoever is present at the time if you can. and keep fighting and pushing, We should not have to but if you honestly need help and can't manage the symptoms you may need to push and throw a tantrum and pester everyone until you find someone willing to help you. my biggest fear was no one seemed to care and my daughter could be shut in her room stuck in bed for weeks on end with no end in site. Also try and get her school on board. Her schools have been fabulous - we have been open and honest with them about her FND and other medical struggles. If you find someone willing to help it does not matter if they are a pedeatrician, a GP, a neurologist, a psyciatrist, a psychologist. After 4 really hard years this year my daughter has had hardly any physical symptoms (she is still in a treatment plan and therapy).

[Kerriekayci]

Hi thanks for the reply my daughter has been going through it now for a year all together she has 21 different kinds of simptoms lately she has been getting really strong electronic shocks in her head I've told get gp and neurologists and all they did was give her more pregabalin that she really hates taking so I did some research myself and found that magnesium tablets are ment to be really good for people with all kinds of disorders and for chronic pain as the body does not provide it naturally it won't show up in a blood test if u are low in magnesium she has been taking them now for a week and she said she can already feel the benefits from it like her body needed it it's taken her leg pain and back pain away and her spazams have nearly stopped as magnesium helps the normal function of the neurvous system it's not a cure as we all no there is non but it has helped my daughter in only a week maybe they can help yours hopefully as u no watching your child go through all this and there is nothing u can do is heart breaking and if it helps even just a little you got to try it just to make there life a little easier to deal with all the best let me no if u try them and if they helped x

[Jofachiz1]

Hello.

I thought it might be helpful to enlighten you as to the other possibilities of what could be causing some of the symptoms. I too was told I had FND after I developed muscle weakness in my legs which then became full body paralysis episodes and fluctuated between feeling normal sometimes and then really weak. .

All my blood tests were normal. MRI(besides a few white spots which apparently are insignificant), lumbar puncture etc were all normal.

It has taken me two years and many doctors, researching etc. to find out the true cause of my disability. It’s called periodic paralysis. There are a number of websites such as hkpp.org that can provide more info. Sometimes there are a few other things that are present along with paralysis. I get shooting pain in my head. Tingling hands and feet, trouble with speech, muscle spasms and cramps. Sometimes weakness can just be in an arm or leg. It’s not always full body. The weakness usually happens following exercise or the next day but can also flare up due to hot, cold, stress, certain foods, change in weather etc. Some people are affected by high or low potassium levels but some always stay in the normal range. I finally have a diagnosis and treatment which has vastly improved my symptoms. I also have POTS which frequently occurs alongside PP.

Testing such as genetic testing or long exercise EMG are more suited to trying to diagnose this disorder than scans but even then, they could be inconclusive. You really need to find a doctor who knows about this condition to see if it may be the cause...

Please feel free to message me if you would like more information.

I am so sorry that you have to go through this situation. It is so heartbreaking but there reasons for fluctuating muscle weakness and/or paralysis that are not psychological.

I am not sure of all the symptoms your daughter has but I hope this might be helpful in some way. It is a rare disease and was not even considered or mentioned to me when I got diagnosed with FND.

Best regards

🌸