Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Sign in to follow this  
cobbiemommy

Is this our life forever?

Recommended Posts

Ds, 15, had an epic meltdown this afternoon? He is so big and strong and when he has that meltdown he scares me. He has picked up the cold virus that everyone else in our house and community has had. He has had a major snot and drainage problem for a few days, but the behavioral stuff just started.

 

His thought processes are not rational and he thinks that everyone is after him and it is survival of the fittest. He goes from irrational to semi-rational. He scared my college age daughter who went to pick him up and tried to help him. Our house is just a cesspool of stress. We called the doc and they said to start him on steroids, luckily we had some in the house. Now I am hoping to rearrange his dr's appt again to get him in asap. We have submitted all of our paperwork to Duke, but have heard nothing back, yet.

 

We have been dealing with this nightmare for over 12 years and have had four ivig infusions over the last five years. Steroids have helped in the past.

 

He just came to me and told me he had horrible thoughts about his sister and that he is a bad person. So much more that I cannot type or put into words. We need a healing miracle. Sigh

Share this post


Link to post
Share on other sites

Sending warm, healing thoughts your way.

 

And I'm here to say, no, this doesn't have to be your life forever! I know it can seem as though it is never going to end, but as your DS continues to mature . . . both physically, mentally and emotionally . . . the meltdowns will simmer, and his ability to more appropriately meet the mental/emotional assaults will improve. Not to mention, his immune system will mature, as well.

 

Take at least an hour for yourself to have a glass of wine or coffee with your spouse or a good friend, or a bubble-bath or a yoga class, and then put your head down and soldier on, just as you've done for the last 12 years. You're a pro now, for good or bad, and you'll make it through. We're here for you!

Share this post


Link to post
Share on other sites

That sounds awful. We have had to live with the violent thoughts, words and actions, constant fighting with kids, dealing with impulsive behaviors etc. Life is obviously miserable in our house too. I can relate to the cesspool of stress and feeling completely stalled out in life being totally consumed with caring for kids. We are hearing lines like "Give me it NOW!", "I'll kill you and cut your head off", "Kill me", "I hate you" "love me NOW" on a daily basis and having to deal with attack on us and between themselves.

 

But I cannot relate to 12 years of it. Steroids, 4 IVIGs and no success? Does your doc have any other plan? Please say so as we are hoping for some relief.

Edited by dasu

Share this post


Link to post
Share on other sites

Really does suck the life out of you, doesn't it? I too have been at it going on 15 years. I just can't believe I have survived this, but somehow we get the strength because we have to. No other choice. My daughter is on so much medication and it all makes her so aggressive and scary, but without it, she sits there like a zombie and can not even get up to go to the bathroom because thoughts and confusion are so bad. It's horrible. I have noticed that magnesium citrate added in with all of the antiboitics does really help to calm the aggression. I am sure you have that on board. I so hope things get better for you. Hang tough! and message me for support anytime!!!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×
×
  • Create New...