my 9 year old daugher started with PNES

[princessabi]

This really sucks. She has more than 40 attacks a day some days. It just started 2 months ago and turned our life completely up side down. So many doctors and srinks. And a lot of unhelpful dr.'s at that. Any advice yall could give this poor kid would be greatly appreciated!! Parent advice would be helpful too. I'm not sure what to or the right things to say..

[pickleweed]

Here is a webpage about non-epileptic attack disorder: nonepilepticattacks.info

Here is a Facebook group for non-epileptic attack disorder: facebook.com/groups/1896816...

The book Functional Neurological Disorder has three chapters on nonepileptic seizures. For me, those chapters were dry reading, and I don't remember them. Then again, I don't have non-epileptic seizures, so maybe that's why I didn't find them memorable.

For temporary relief, see if putting a heavy blanket over her body helps.

I have read that when someone is having a non-epileptic seizure, that person should be left alone instead of fretted over.

[Hopeful40]

My heart goes out to both of you as I am truly sorry that she is experiencing this.

Where do you live?

Have she been tested outside of the conventional medical for Lyme and co- infections via the Western Blot blood test by Igenex if your in the US to rule this out for being the underlying cause?

[princessabi in reply to Hopeful40]

No one has suggested this. I'll look into it. What are you basing this on?

[princessabi]

Do you have this illness?

[Hopeful40 in reply to princessabi]

Yes. I was first diagnosed with FND and after joining and seeing so many very similiar to myself I felt lead to keep searching because I felt something was being missed or overlooked. I stepped out of the conventional medical and I took the western blot blood test by Igenex.

Where are you located?

I have learned so very much and now realize that the doctors in the conventional medical are limited in accurate testing and diagnosing because they are following CDC guidelines and they do not acknowledge chronic lyme. I had been tested at three hospitals for Lyme and told it was negative and that I did not have Lyme. I did not realize at the time all of this and the controversy.

It is not just Lyme they also carry many other infections which I also did not realize. I have neurological lyme, bartonella and other infection because of this. Lyme symptoms mirror FND symptoms. I was diagnosed with FND by a FND specialist whom I liked and he was very thorough. I share this because my heart goes out to so many that are suffering and may want to know about this to rule it out. To know if it is not the underlying cause for the symptoms. I never remember being bitten by a tick and never had the bulls eye rash. Many dont which is contradictory to what we are told.

PNES is a symptom of Lyme and co infections as well.

Here is a link to a documentary for a better understanding. My heart truly feels for you. Remain hopeful and may you find your answers for continued health for your daughter. Message if you have any questions.

youtu.be/sxWgS0XLVqw(Not working as expected?)

[princessabi]

Thank you for your kind words and your story. We live in US. I will ask her Dr about it

[Hopeful40 in reply to princessabi]

Your welcome.Please remember that a regular/ conventional doctor will not help you with this. I would recommend finding a Naturalpathic or Functional Doctor that is Lyme Literate. They will do the correct testing for you.

Is she having other symptoms?

Please keep in touch when your able.

igenex.com

[princessabi]

I am on the computer researching Lyme. It just occurred to me that I had it after hurricane Katrina (We live in Louisiana) Sooo, you may have something professor.. ty

[Hopeful40 in reply to princessabi]

You had Lyme? Was this before you had your daughter?

[princessabi in reply to Hopeful40]

I had it a few years before I had her. I didn't know if Lyme was something the body harbored in some way even after treatment. The dr said no.

We were researching autism, she has alot of the symptoms we think . The therapist says that's prob not it.

I am in communication with the London research team via email. I asked if this could just be from stress and anxiety, she said yes. So I don't really know what to do. Abi is up to 300 seizures/fainting spells a day. This is no joke for us..

[Hopeful40 in reply to princessabi]

My heart goes out to you. It is very hard trying to get answers and if Lyme/ Tick Borne Illness is the underlying cause you will have to step out of the conventional medical. Do you have access to a Naturopathic Physician that is Lyme Literate around where you live? They can do the western blot with Igenex.

Unfortunately there is so very much controversy with Lyme in the conventional medical and this problem is worldwide.

There are many studies showing that it can be passed down from mother to child. If you know that you had it this could possibly explain why she is having symptoms. If this were to be the underlying cause with treatment one can find improvement. Please read more on this as there is a lot of information available.

There is a facebook group online called- 'Baby' Buhner, Codwen, Klinghardt and more -

This might be a good resource for you to learn more as it is parents that have children with symptoms. If your not able to find it pm me and I will see if I can add you.

This is another very good resource and this month is Lyme Awarness so the book free, just shipping cost.

rawlsmd.com/books/unlocking...

If it were to be this the goal would be to start some form of treatment to reduce the toxic load, repair the gut and boost the immune system. I found by removing gluten, dairy and sugars helped with inflamation which helped decrease symptoms.

One more question...are you aware of any mold around?? I ask because people with Lyme and co-infections tend to be very sensitive to mold which can cause seizures. You mentioned you live in Louisiana...the hurricane...??? Home, area?? I know someone that has Bartonella ( can be a co infection from Lyme) and has experienced seizures and found mold to be a big factor. Once they figured out where the mold was the seizures improved. Ones body is extremely reactive if they have Lyme and co infections to so many things- foods, chemical, mold, etc.

Please feel free to pm me anytime.Please know I am not saying this is what it is however it might be worth looking into more to rule out.

Keeping you in my thoughts and prayers and may you find your answers soon. Remain hopeful. Hugs.

[pickleweed]

Just two days ago a mother told me that cannabis controlled her son's PNES. There are several books sold on Amazon.com about psychogenic non-epileptic seizures.

[princessabi]

I read some research on CBD oil shown to reduce attacks by up to 50 %. We started her on it today after consulting with her Dr. Hope to see positive effects. Thank you for thinking of us. On bad days she has up to 100 seizures, so half would be a good start..

[princessabi]

Is it a US state she lives in? We live in Louisiana USA

[cgarff]

Hello Pincessabi, first of all, you are an amazing Mom who is taking care of a girl who has been cheated of a normal life with this Hell of FND. I pray that you can find the answers that you need to help her. I am also in the US and was tested for Lyme, but only came back with one negative marker, and you need to have 5 or more if I remember right. There has been a time where I was getting anywhere from 15 to up to 42 PNES a day. May I ask an odd question for you? Does she remember what is happening when these happen? Or feel what is going on? My Neuro can't even answer this question because she hasn't been through it, and I would love to hear it through the eyes of another FND PNES person. I did question my neuro though on PNES last year even though I was getting negative results. When is she having most of her seizing? Day or night? Mine were mostly at night so all the testing during the day. For some reason it wasn't catching things, so I talked my Doc into thinking out of the box. She did a 3 day vEEG (video EEG) and amazingly enough, they were able to find that I was not only having PNES, but Epileptic seizures as well. My doctor has me on 4 different medications now, that are making quite a bit of a difference that has cut my seizure activity way down. I still have them, but not nearly what I have had in the past. They currently have me on Aptiom, Ropinirole, Depakote and Divalproex and clonazepam.. but really, it has been trial and error to find out which meds will work, and which ones won't. I would be happy to chat if you need to. Wishing the best. Hugs to you both.

Cheryl

[princessabi]

Her mind gets a little fuzzy. She can have them and not always remember they happened. The funny thing is it didn't start with PNES. She was having major problems with anxiety and depression. She was seeing "monsters" in and out of her head. The monsters disappeared and the seizures started after the psychiatrist started her on meds. They went up to 800 PNES seizures a day. I took her off the meds myself, and they are down to 0-5 a day after a month or so. All caused by stress, loud sounds, or anxiety..