Hello to all our FND Brothers and Sisters

[Moses4]

I am new here. My name is Lee Ann and our son has NFD. He just got out of the hospital and was in the PEDS. Intensive care unit for uncontrolled seizures until when we left Monday and came home. he had about 50 some seizures which was really horrific for him to go through' they were all grand mal. they have died down to over half to about 1 or 2 a day. but still happen daily. on some of the events he pees himself, can not walk, can not talk and now server stomach spams. which he screams out in sheer agony until it subsides. The school had to say he could no longer attend and now we home school him. He is on a anxiety med. it has horribly affected his quality of life and has a impact on our whole family as well. he does see a med psychiatrist (hate it when he says they are fake seizures , it really hurts me and makes me upset ) and a psychologist who has yelled at him once for starting to go into one. he is 15 years old and does not have any friends only online which does give some social interaction. He does get sad at times and I do try to encourage him and that there is always hope. We are now trying to find someone in the US that does treat this disorder. IF ANYONE HAS ANY SUGGESTIONS FOR A SPECIALST WHO TREATS THE DISODER,PLEASE LET ME KNOW. Also any other suggestions you have would be so appreciated . Oh, after his seizures he fills horrible for the rest of the day and we have to do his school work around how he feels. I will lift all NFD brothers and sisters up in prayers that one day we will not be judged but treated as a whole person and not stigmatized. below our kitties Smokey who is gray and Chester . whenever Caleb has a seizure he never leaves him the rest of the day. stuck on him like glue. Amazing how our animals are so loving when they know we are sick. Chat at you soon.

[DNE92 Moderator FND Hope UK]

So sorry to hear such things but unfortunately we have heard them all too often and repeatedly. I too get daily seizures some of which are agonising and afterwards I’m usually left with temporary paralysis- but never knowing how long for. But I’m an adult - not a child in pain. Go to appointments heavily armed with your correct info - the big emphasis is that FND is diagnosed on positive symptoms by a neurologist and not just a diagnosis given when results come back normal. Record appointments even if you have to do it secretly.

I am UK based so sorry can’t help re USA. Thinking of you and your family.

Cheers

Lou x

[flufff]

Hi. I am so sorry your son is going through this. I am your sons age and also suffer with FND. I see a psychologist and a psychiatrist. I also see a gastroenterologist and nutritionist because I also have gastroparesis and disordered eating. I have a pcp and a complex care doctor that oversees everything. I attend physical therapy regularly too. I am sorry that he is unable to go to school. I know for me that is tough. My best tip is to stay as social as possible. Even though I am unable to go to school I try to connect with friends as much as possible. I often snapchat and facetime them. I also make plans to see them. I think it is very important to have friends who understand your condition and are not scared by it. It is important to see friends in person in a way that is possible. For example once a month I have dinner with four of my friends and one of my friends who is home schooled comes and visits me during the day. I also recommend trying to keep life as stress free as possible. At least in my case stress makes my FND act up and the FND acting up causes more stress. A viscous cycle is created and my doctors, parents, and I do whatever we can to break this cycle.

I wish you and your son the best of luck and you can message me if you have any more questions. Also Smokey and Chester are adorable.

[Moses4 in reply to flufff]

Hello Fluff, I just now read your response. Sorry so late. But I was wondering if there is a way you can connect with my son. It would be so encouraging and awesome for him to have someone to friend up with so that he will have someone who goes through what he does. Please let me know as that would be such a blessing for him. Thank you Lee Ann ( his mom)

[cshubert]

Wow. That is just heart breaking! I am the one in our family who has FND, but as a mother, I do still understand the emotional pain you're experiencing for your child. All three of my kids are either firmly on, or so close they may as well be on, the autism spectrum. All three have SPD (Sensory Processing Disorder), and two of them have ADHD. My middle son has symptoms that are so bad, we just pulled him out for homeschooling. We struggle daily with people not understanding why our kids behave the way they do and with people not being able to understand what's going on due to their disorders being "invisible". As a result, our children are repeatedly excluded by the parents of the children my kids play with. I know how heartbreaking it is to watch that!

I also understand how demoralizing it is to have the medical community look at you almost with distain for having a condition that is totally beyond your control! I'd say first things first, you should dump the psychs who are misstreating you and your son! We had a therapist for 9 months who was rude and condacending towards us as parents because of the issues our children faced! We stayed too long because we didn't know any better (she was the first therapist we'd ever seen). I am in the US (Georgia), but unfortunately I don't have any recommendations. My neurologist is at Emory, which I thought would garuntee me a good experience...it did not. 😫I do, however, have a good therapist now who I have been with for over a year.

What caught my attention the most, though is what you said about your cats. My cat, Tigger, who died unexpectedly two weeks ago, was always laying on me (or the family) on the specific areas that were hurt or injured! After my first back surgery, Tigger sat outside my bedroom door and meowed relentlessly until my husband let him in. Every single time, he went and laid right next to my surgery incision. He did the same thing with my shoulder surgery (laying on my shoulder), my hysterectomy (laying over my former uterus), and after my MIL's ankle surgery (laying on her ankle). If any of us was sick, he'd stay by our side until we were well. I have chronic gastritis and almost daily stomach pain, and Tigger always made a point to sit on my stomach...not my lap, like everyone one else... he'd specifically go up higher and sit on my actual stomach.

I say all this to say, over the summer I experienced an absent seizure while at a coffee shop with a friend. When I came home, utterly exausted and disoriented, Tigger came and sat on my head! In all the years we had him, he NEVER one time sat on anyone's head! When my husband tried to move him from my head, Tigger dug in and wouldn't be moved. Animals have a sense about things that we don't. The fact that Tigger could sense exactly where a person was hurting/ill says to me that he knew something was wrong. The fact that he sat on my head that day...the one and only time...tells me that something was happening in my brain, whether the scans show it or not.

The doctors still don't know what causes FND and therefore don't understand it. And because they can't see anything on a scan, they assume it's an emotional response. Maybe that's true for some cases, but not all. And if it is true, what is the cause for the body behaving the way it does? I think we should pay attention to our animals and what they sense around us. If an animal can be trained to sense a diabetic's drop in blood sugar, an epileptic's approaching seizure, or a child with Autism about to have a melt down, why couldn't they sense the oncoming symptoms of a person with FND? To me, our animals' perception of what is wrong with us speaks volumes about what the medical community CANNOT see!

You are fortunate to have those sweet kitties there with your son. I wish I could offer suggestions, but at least maybe it will help to know you're not alone!

[Moses4 in reply to cshubert]

I was at Wal-Mart one day and this young girl had a dog because she had a seizure disorder. I told her so did our son. She said her dog was a emotional therapy dog and she said before she was about to have a seizure her dog would let her know so she could have a area she could go to or sit down immediately. So therefore you are right about animals knowing just like someone with epilepsy or diabetes. When our son has a seizure both the cats always come right to him and sit there until it passses and stay and lay with him the rest of the time until he gets up. We love our babies. And thank you so much for sharing that with me. Hugs

[princessabi]

Hi. I just saw your post. I live in the U.S. Did you have any luck with specialists? There are 2 that we know of. In Florida and Ohio. We were considering using one of them for our 9 year old daughter with PNES. Do you know what triggered your son's illness or did it just suddenly appear?

[Heartofgold]

Dr. Moukheiber Johns Hopkins (Greenspring, MD location) is a wonderful specialist who gives very thoughtful advice. I went there last Wednesday, and followed up with my primary care physician. After reviewing all notes, and my medical history. He said he could write a prescription for a mood enhancer, but it was rather pointless. He also observed that when I had previously smoked marijuana it made almost all symptoms subside. He gave me the old "you didn't hear that from me". I asked about CBD oil (Cannabis without it's THC component), and his thoughts (yes, I've tried it already and it works for me)….he recommended someone in the field, and even offered to help me obtain a medical marijuana card to buy from the dispensary - he advised against that because once you have a card, you are registered, and then your business is everyone else's, AND you lose some of your rights (they can seize your guns, if you have any, etc.). Living in the country, he suggested that I try another route. There is a pharmacy in Maryland where you can buy CBD oil essentials, but the gummies are only available online (unless you have a card, or "know a guy"). Some folks tend to question the safety and efficiency of CBD, but I know for a fact that it is both safe and VERY effective (and if given alone, without THC, will not produce a "high"). There's been a stigma around Cannabis, BUT the CBD oil does not show up in drug screens, will not make you high (by itself), is safe, and is effective. If it were my child, they absolutely would be granted access. It seriously could change his life. I had severe symptoms to the point of paralysis. I can now care for my husband, two children, home, yard, and a busy insurance career - I still get overwhelmed, but my quality of life has rebounded drastically! Praise God Best of luck to you, and let me know if you need any more help with this.