my 15 yo son was diagnosed a year ago with FND. Initially it would present as pseudo-seizures and he’d feel pain throughout his body and be unable to move. The movement after the pseudo-seizures improved and eventually he stopped dissociating and having the seizures, which we thought was great. He said he’s not experiencing anxiety anymore but lately he has told us the pain that used to primarily be in his knees has started moving up his body and now he’s feeling pain everywhere. He has started experiencing nausea and vomiting which he said is due to the pain.
Anyone else have this going on, and any suggestions on treatment? He is currently in an outpatient program treating depression and anxiety using DBT. He says it’s not working. Would love to hear if anything has been helpful for those in similar predicaments.
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SD_mama
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Hi, is he still experiencing the diassociative seizures. My loved one had his in his thighs and they were intense at times. He couldn't stand because of fear of them going into an the involuntary movements and those loosing his balance. I bought him a wheelchair to shuffle onto to get to the bathroom. The involuntary movements would ase up my mid afternoon and then stop and almost never at the weekend.Never experienced sickness and nausea but maybe, although he says he isn't anxious, he could be subconsciously.
12 months+ on and we haven't gone down the route of therapy or CBT (not the easiest to get a teenager to get their heads around esp one with FND) but "talking therapy" maybe.
I’m sorry you and your loved one are going thought this. It is hard on us all and really difficult to understand.
I highly recommend looking on psychologytoday.com and looking into finding a practitioner of DBT. The goal of DBT is talk therapy to get to a place where they can manage their emotions. Our experience has been that the more heightened the emotions, the more out of control the FND symptoms.
We have had a lot of advice in the last year so I can tell you the therapy piece is important. He needed physical therapy to get him moving, but it’s the talk therapy that he will need long term.
You mentioned your loved one only experiences the symptoms during the week. I’m wondering if they have any issues at school like bullying. My son feels he is bullied at school and his symptoms would normally present in the morning while we were driving to school. They would typically happen for us when my husband was traveling. All the doctors and therapists we have spoken to have talked about how important it is to keep them in school. He missed some days this past year, but mostly we pushed through and he went to school although he would tell you he didn’t necessarily like it. Additionally, we haven’t seen as much of the dissociation lately but unfortunately it has been replaced by angry outbursts, so that is also not ideal.
I’m here for any questions you have. Hang in there!
No bullying mentioned and believe me many have asked, missed nearly a years education because for months and months I physically couldn't get him downstairs.
He neither likes nor dislikes school. However, we are on legal letters now so I have to get him to go for at least one or two lessons.
Now its the headaches but weekends too (maybe not as bad but definitely there).
Have looked at private psychologists because nothing offered and highlighted a few specialising in neuro but not yet found out costs.
I suggested having an online teacher today on a platform he seems to excel at but that didn't get a positive response nor did me speaking to his teacher to get extra resources to help him catch up on a particular subject.
Kind of end up going round in circles. May with the support and encouragement from the Neurologist in a few weeks will bring some positive changes.
I know what you mean about the anger, he is quick to shoot the messenger.
I hope things go well with the neurologist. My son was in a chronic pain program at Rady Children’s Hospital which really helped us understand pain, but more importantly it got him moving. It wasn’t a “cure” but it did give him the ability to move and smile. They have similar programs at a lot of children’s hospitals around the US. This is an interesting article about these types of programs. npr.org/2019/03/06/70074310...
They do have a clinic in Bath about an hour and half away from us, maybe I should have gone down that route. If he got downstairs he could of gone to school, we proved it on several occasions although he was in agony and one day took about 2 hrs, in was heart breaking. I'm good cop bad cop and everything inbetween.
Thanks for the link maybe it could help him manage his headaches, I will see how I go about referral. Did you have several sessions and was your clinic nearby?
Was it the RAPS treatment programme your son went on, I read the story of Devlyn, poor girl but I get the concept. I will see if I can find out about treatment program in Bath. Thanks.
Suggested trying again at gym membership and personal trainer who could push him that little bit harder but met with negativity, maybe timing. Can't get him away from xbox 😐
My son was unable to walk following his knee surgeries even though the doc said he should be able to put weight on one leg without pain. If we had a physical/physio therapist (PT) helping us, there is a chance it could have helped, but as his parents we just saw his pain and didn’t want to push him. The program at the children’s hospital was 5 weeks inpatient, but was local so we visited daily. He had hours of PT and occupational therapy to do desensitization exercises where he felt pain. He went to the pool daily and that was where he realized he could walk and we really started to see leaps of improvement in his physical mobility. There were heartbreaking setbacks (he would have pseudo seizures and stop trusting his body, going from walking to relying on a wheelchair) but over time they became less frequent and his recovery faster.
I hope the neuro can help you find a program for him. It’s too hard as a parent to push your child without the support of a doctor or team of doctors, which includes at a minimum talk therapy and PT to help him get moving again.
Thanks, me too. Glad your son is on his recovery path. I think my sons started from Osgood Schlatters Disease and yes Dr said, walk, put wait on it down he would fall. I lost count of the number of times he collapsed just getting out of bed and he would go right down onto his knees where the pain was originally. So I think thats where the chronic pain started, FND I am thinking "Fifa" fir anger and maybe loss for withholding emotion but thats a guess, I'm not a Dr, although think I now know more about FND symptoms etc than our GPs.
Struggling mentally more now (after supporting, caring and watching him over a year of Chronic Pain Syndrome and FND) and have had little physical support let alone emotional and feel like we have been let down badly by our health service.
It was the last four falls (one debatable did he trip (although he did say at times tripped over his own feet", or did he collapse "drop attack" (you call them psuedo seizures but they no longer call them that as "psuedo" I believe means false - I googled it that caused constant headaches and his legs were suddenly still, although sometimes achy and I need to massage.. To me its seems like the pain is where he last experienced pain ... if you know what I mean.
On my birthday it was another visit to A&E safeguarding with my son and then been told I was overprotective because I hovered by the stairs (so he didn't collapse). I left in a state of ... which am I ... a threat or a neurotic mother.
All I want to do is run away somewhere hot and let him swim, run, play football on the sand until he is exhausted but then there is the question of him flying.
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that caused constant headaches and his legs were suddenly still, although sometimes achy and I need to massage.. To me its seems like the pain is where he last experienced pain ... if you know what I mean.
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