Kleine Levin Syndrome

[Stacie M]

My son has PITAND. Yesterday my husband was diagnosed with Kleine Levin's Syndrome. Both are neurological and have triggers that set them off. Kleine Levins can be triggered by a virus.

I refuse to ignore the similarity between the two.

I HATE THIS, but I won't let it define my family.

I will fight for the beautiful people I know my son and husband are. I know they're in there somewhere.

[pr40]

I know that you need understanding and support at this moment more than anything else. But, given that you are taking care of two sick people perhaps it would be useful to all of you to hear a contrary opinion.

As I see it, my children and wife, all three of them are very much defined by the condition they have. I don't expect that condition to disappear anytime soon and we all are doing our best to acknowledge it, accept it, and try to improve it. given that these are auto-immune conditions, there is much that can be done with meds, through diet, life-style changes and supplements -- thought all these things we can do are not guaranteed to work or have lasting effects.

All you can do requires a lot of discipline and clearly set goals and denial might be our worst enemy.

Courage!

[Dedee]

I am so sorry you are going through such a difficult time right now. I hope you have a good medical team for both your son and your husband. It must be very hard to have to deal with both at the same time. It is good to be ready and willing to fight for your family. Unfortunately, we often have to do that when dealing with PANS. Do you have a PANS specialist? If you need any suggestions or just need to vent, do not hesitate to come here. There are wonderful people here who can help. Best of luck.

Dedee

[thereishope]

.

Edited September 29, 2019 by Vickie

[tpotter]

Have you checked in lyme and other co-infections? Also, has your doctor done a full panel of viral tests? If they suspect it is viral, they should be able to find it. Lyme and co-infections can also cause all the symptoms you are describing.

[Guest]

Very sorry about your husband. I remember reading quite a few articles about this syndrome and it sounds really horrific. I don't know what else to say, but so sorry.

[Guest]

You are right about them being in there somewhere. I think my supportive loved ones and friends can still see that about me, see what's inside. I'm glad you can still see that.