Oh my…..I truly feel like I am taking a ride on the crazy train all alone! These past few weeks have about done me in and I feel like I am going crazy. I hope this is a short train ride and I really hope it doesn’t have just one stop in crazyville. This PANS/PANDAS diagnosis, seizure disorder, temperature dysregulation, low immune system, childhood vaccines not taking, among other things is about to drive me crazy; can’t even begin to understand how Hannah must feel. Add to the mix dealing with insurance and then trying to determine if the treatment of IVIG is going to help Hannah or cause more problems (which I just found out on Friday is a real possibility), has made me well…..CRAZY!!
We have a wonderful group of doctors working with us and for us and I am thankful for that. But, treatment for PANDAS is different from treatment for low immune issues and those 2 treatments could be counter-productive. IVIG is the treatment for both but with PANDAS you do a high-dose IVIG and with low-immunity you do low-dose. Using high-dose could have horrific side effects but using low-dose might just piss-off PANDAS causing Hannah to flare worse than ever. Making her anger, aggression, rage, sadness, anxiety, OCD and tics unmanageable. Once again, I find myself in a catch 22 and it sucks; to put in mildly.
Let’s not even go into my head at the moment and how truly lonely, angry, anxious and sad I really am. I try my best not to be those things. The loneliness is going to happen regardless. Heck, I am stuck in my house 24/7 with a sick child. My conversations during the day are limited to interaction with Hannah which is mostly the same phrases being repeated over and over by her. Hannah’s vocabulary is limited but one of the symptoms of PANDAS is repetitive behaviors and language. Hannah will say the same 10-15 phrases all.day.long and will continue to repeat them until I acknowledge her and give her my same response each time. It is because her brain thinks so obsessively about things that she continues to say things over and over and over and over again. That in itself is enough to drive a sane person batty and let’s not forget I am not known for my sanity. So, the loneliness at times is overwhelming….I have turned into an introvert out of necessity, but I miss that girl I once was.
The angry part that brews is over so many things. I am angry because this is my child’s existence. She doesn’t get to live a life like other kids and that causes me lots of sadness and anger as well. It is unfair and I hate it for her. She can’t go out to dinner, play with friends or at this time even see other family members because we have had to totally isolate her. I get angry at the lives other parents have…..date nights, mini-vacations or getaways with their spouse, girls nights and trips……all the things other people get to do. I get angry at times that my husband has a life. He gets to go to work, church, Bible study, out of town…..granted he has to do some of those things; but sometimes I do get very jealous. Don’t get me wrong, I am happy for him….not at all mad about it but it has caused me some anger and jealousy lately. Now, let me say this before whoever is reading this things horribly of me. I am HUMAN! I have all kinds of emotions and I feel them daily, but I will continue this life forever if I have to. I know women out there that either can’t have children or have lost children that would probably do about anything to be in my shoes and I don’t take that lightly. I am not complaining as I will do this until the Lord calls me home but IT IS HARD! I will stay trapped in this house 24/7 if I have to. I will do what I have been doing the past 18 months forever if need be. I know it could be worse, but with that said it doesn’t change the fact that I feel….that I hurt and that I cry out to God everyday to fix this….not only for Hannah but for me as well.
I get sad and anxious when I see my little girl look like she is about to pass out because she is so pale. I look at the dark circles under her eyes which tell me she isn’t sleeping well. I see the way she holds her head and pulls her hair knowing that she is in pain with headaches but she can’t verbalize that. I feel the heat coming off the top of her head full of fever and inflammation. I see her press on her tummy many times each hour and I know her tummy hurts. I see her sad, angry, alone and full of anxiety and obsessive behaviors and thoughts and it makes me sad and anxious for her. This is truly heartbreaking and there is nothing I can do to help her. I cannot fix this and it has absolutely broken me. She is my heart, she is my world and without steroids she is not the same little girl I had 18 months ago.
Hannah has been on a steroid taper the last few weeks. We are weaning her off right now and I am beginning to see her regress again. All those behaviors and personality changes are coming back and I dread next Saturday when we are off the steroids altogether. Unfortunately, steroids are bad for long-terms usage and would cause her irreversible issues. So, it isn’t our cure, although I truly wish it was. I have a feeling that the crazy train isn’t stopping anytime soon unless God reaches His mighty hand down and heals my daughter. I believe that He can but so far, He has chosen not to. I accept that…..I accept His plan and I will do this forever if I have to but in all honesty….I don’t want to. I want my little girl healed. I want her whole. I want her back for good!
Until next time……….