I've visited this site a few times but this is my first time posting. At first I was apprehensive about asking for help for my daughter because some of the stories I've read seem so much worse than hers/ours. But then I changed my mind for two reasons: 1) I have looked all over the internet trying to find a story about how a child is supposed to deal with this and still try to maintain a normal life and I couldn't find anything so I'm hoping I can get some feedback on this site. 2) I've read some stories of people who've been suffering and I'm hoping my story can help them so here goes....
My 11 year old daughter fractured her ankle while sledding in February of this year. She was in a cast for a few months because her ankle wouldn't heal. Then she started feeling pain in the opposite foot,so much so that she couldn't walk at all. She didn't walk for about 2 months without crutches and eventually was confined to a wheelchair. She was diagnosed with FND in April. While waiting for a spot to become open at a rehab facility, my daughter had some seizure like spasms and movements where her toes were wiggling and her feet started flailing uncontrollably. After being turned away at two ERs, we contacted a neurologist at Childrens Hospital who immediately checked her into their inpatient rehab facility. We spent a week there and while there, my daughter had physical, behavior and occupational therapy. She was walking by herself without pain on day 4! She still continues to get the non epileptic seizures and tremors but she goes to behavior therapy once per week and she sees a psychiatrist twice per month and her symptoms are steadily decreasing. The doctors said this condition usually stems from some sort of psychological stressor and the key to recorvery is early diagnosis and physical and behavior therapy. In our case, our family dog attacked my husband which we believe was the start of her PTSD and FND.
I'm sorry for the long post but I wanted to share my story in hopes of helping someone else. Also, if possible I'd like to know if anyone has a child with this disorder and how this is affecting them going to school.
Thank you
Tanika
Written by
Tharris610
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It sounds like you've been a great Mum with getting all the correct treatment possible.
Myself at 35 with the disorder have found that pacing myself has helped and the biggest thing is getting enough sleep. I can now identify if I'm too tired I'm likely to have a seizure. Sometimes I just have to take a morning for myself and I sleep for a extra 4-5 hours. I wake up feeling like a new person.
I wish your daughter every success in recovery and I want you to know that in my case I have found it manageable and and have improved greatly with the right attitude and discipline.
Thank you for the reply. We're trying to stay positive throughout this and we want to keep things as normal as possible. School starts in a few weeks so we're going to take it one day at a time. All the best to you as well.
My son is 14 and got fnd after a concussion a couple years ago! We were able to resolve his walking ( lost all feeling in his legs)- similar situation it sounds. Our biggest issue is resolving his sensory issues, head pain, concentration and non epileptic seizures! He has been doing homebound school and just starting him back one class at a time. Last year we tried to have him do most of the day and his body crashed. It took 9 months to get him back to where he was. Hoping the pacing will help a little! Our biggest issue is finding drs and psych that can help him to get better and helping him stay positive (Which can be very difficult)!! Heart goes out to you. It's so hard to wash our kids struggle so much. Hugs!
I feel for your son and your family. I hope he continues to get better. Yes, staying positive is the hardest! People just don't understand how hard it is to see your child in pain! Especially if they seem fine to the outside world. The doctors are telling us to keep things as normal as possible but how can you do that when as a parent you have to be there for your child. You can't let them play unsupervised in fear that they'll have an "episode". I'm afraid of letting her start school in a few weeks for this reason and kids can be so cruel. I'm sorry for rambling. Thank you for replying to my post.
I know.. we have felt the same way! It is such a hard call! As a mom all we want to do is protect our kids and make their paIn and episodes go away! Take care, I hope things go well for you guys this year!
There are a couple of Facebook groups for carers of people with FND, and a lot of the carers are parents of children/teens. Perhaps worth a look? I'm not a member but my partner is.
Thank you again. I have joined this group and it has helped me already just as this one "Health Unlocked" has. Many thanks to you and to all who are a part of these groups.
Tharris610, My thoughts to you are.. please don't apologize about rambling.. you as a caregiver need to get your worries and frustrations out as well in trying to figure out FND. This is such a crazy disorder, and you need people on your side who know what you are going through, and can hopefully provide helpful information. My hear is just breaking for your child having to deal with this at a young age. I just can't imagine having to deal with these issues as well as trying to be just a normal kid. That is rough. Hugs and High Fives to her for trying to overcome this!
None of us want to have to deal with this at any age, sufferer or caregiver. My prayers are with you, and I hope that you can find the help you need. Continue to search for answers, do the therapy, and do you best to keep her smiling and make her laugh, because that beats the alternative. You are a strong mom, and you can make it through this as well, just don't give up.
Hi could you share which hospital this is for inpatient rehab? My son has almost no use of his legs and we were told a functional disorder. I think it's FND.
Hi. My apologies for the delayed response as I haven’t visited the site in some time. We were originally supposed to go to the Children’s Institute and they weren’t moving fast enough in my opinion. So she was admitted into the Children’s Home for rehabilitation after a stay at Children’s Hospital. We are in Pittsburgh PA. I hope you can get the assistant you need for your son.
Hi there! I think it's great that you put your daughter's story out here. I myself, am younger like your daughter. I currently go to school but it's been hard lately. I symptoms are non-epileptic seizures, pain, and paralysis. I am waiting to get into a rehab center to help. You have done a great job with all of this though, I know how hard it can be, especially on days when your symptoms flare. As for school, I'd just make sure to inform them about what's been going on. My parents haven't done that for me, and it really does just make things so much harder, so I definitely recommend that. How is she doing now? Hope she's doing okay! Sending my love and prayers to you both!
Thank you for reaching out. My daughter has been doing quite well especially compared to what she was doing through in the beginning. I transferred her to a school that could better support her and her condition but without bringing a ton of attention to it or to her. She was attending a private school at first but they did not support an IEP as most public schools do (Individualized Education Program). I was able to meet with all of her teachers, school counselors, etc to give them background on her condition. It felt really empowering for myself and for my daughter to tell her story and to actually feel like we in a place where people were in our corner. Thanks for your well wishes and I hope the best for you as well!
So sorry to hear of what you and your daughter are going through. I am going through similar similar situation and I was so happy to find this site. My daughter is 14 now and was diagnosed with FND at 12. We had been to several Drs trying to figure out what was wrong, it started out as non epileptic seizure-like activity. It has now progressed to severe muscle spasms/contractions, mostly to her right side and at times her neck/chest. She is in severe pain much of the time and is now going into a deep depression. There are times when she can't walk. She is loosing weight and sleeping all the time. I can't get her to go to school, we are on was list for online public school now. She sees a psychologist for CBT and a psychiatrist as well. Mostly every 2 weeks. Nothing seems to be helping. The only thing we have not done is the intensive treatment as inpatient. Can anyone share their experience with this? I'm exhausted and feel like I don't know where to turn to help my daughter.
Oh my goodness!! This honestly just breaks my heart. I am only 15 so I understand being young and sick and it can be so hard! As a mom, I’m just gonna tell you, you are doing everything you can. I know how hard it is to see your child go through this, but just know you are doing all you can. I wish I could help more, but I myself am still trying to figure this all out. I also have non- epileptic seizures. Wishing you the best!
Thank you so much for the response, just knowing there are others out there helps a lot because going through this with your child or for yourself it can make you feel very alone. Thank you again and postitive thoughts are being sent your way! If you have any breakthroughs please share.
I sympathize with you and your daughters situation as well. I know it is hard for the both of you. We’re really trying to stay positive and keep to as normal a schedule as possible. My daughter has also started to feel depressed especially because for a time things were going really well then here comes a new symptom that she’s never had before! We are trying to schedule outpatient physical therapy now because her right hand is stuck in a closed fist position. To answer your question about inpatient treatment, we stayed at a facility for a week and it was mostly physical and occupational therapy, nonstop. It really benefited my daughter because before then she was unable to walk. I keep reminding her that she’s come a long way but it’s really hard because you never know what’s going to happen next. Best of luck to you and your daughter!
Hi Tharris610. My daughter's FND typically involves her hands closing up in to a fist position. We haven't usually found formal therapy helpful (but that is probably due to an absence of specialists where we live - how I wish we had access to specialist advice and support) but we encourage our daughter to do as much for herself as she can and often find when she is distracted by something interesting (e.g.cooking) her hands free up a little.
Thank you! Very true about not knowing what is going to happen next. Just when I feel she may be getting a handle on one thing another seems to appear. She was officially diagnosed at Mayo....we may end up back there for the inpatient, it just does not seem like the therapy and meds are working very well for her. We just keep trying different things until we find something that helps. Biofeedback worked very well for her in the beginning but even that is not working as well any longer. FND is such a cruel disorder.thank you for sharing your story here, blessings to you and your daughter!
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