Rett Syndrome Pain

Annie's little body has been responding fairly well to the new med she is on for pain, unfortunatly as is usually the case with rett syndrome when you solve one problem a new one pops up.  In this case it's sleep, ahh yes, lack of sleep, here we go again.  I swear Rett Syndrome would be so much easier to deal with if Annie never had to eat and never had to sleep, these 2 things just seem to be our arch enemies.

Last night Annie actually did really well, she slept from 9 until 5am with only 1 dose of each of her sleep meds!  I woke up with her at 5am and thought "all right!  We are over the sleep issues, today is going to be a GOOD day".  Why oh why did I have to say that.  I got Annie dressed, gave her her meds got her downstairs and put her on the couch while I made breakfasts for the kids, packed their school bags and downed some coffee.  I went to grab Annie off the couch and realized that she was kicking and breath holding a lot but chalked it up to being tired (usually when Annie sleeps well at night she's more sleepy during the day - I know, that doesn't make any sense) and thought that once I got her in the car to make the treck to school she would take a nap and all would be fine.  I fed Annie, got the other kids up, packed everyone in the car and started traveling the snowy roads the 20 minute drive to Jay's school.  Annie never fell asleep and started moaning - uggg, my heart began to sink, moaning is NOT a good sign.  After dropping James off I turned around to head back home about halfway through the drive Annie's moan turned into a scream, at this point I realized we were not dealing with a sleep issue here, this scream is a scream of pain.

When we arrived home we had 15 minutes for me to take a shower and get Grace packed for school.  I put Annie on the couch and the screaming continued and now heightened with frantic kicking.  Grace and I rushed to get ready and I put the girls back in the car - Annie still throwing a fit.  I could have kept Grace home from school and tried to console Annie but we've been through this many, many, many times before and my main concern was getting Grace to school so she could be released from the lash of Rett.  When we got to Gracie's school Annie was beside herself, I thought to myself "Dear God how am I going to get this girl into her chair so that I can take Gracie into school".  I manage to get Annie's chair out of the car and unbuckle her, as I grabbed her waist to get her thrashing, screaming body out of the car I watched Annie's face as she searched for something to bite, thankfully I was wearing my winter jacket, it took most of Annie's wrath - "everything's OK Annie" I lie.  Once in her chair I had to hold her flailing body down to put all of the straps on her, I also strapped down her feet because she was kicking so badly that I thought she might hurt herself.  I tried to gain my composure as we walked into church 20 minutes late for preschool with a child screaming and thrashing in her wheel chair.  There were still some parents there a couple of them looked at Annie, horrified at the sight of her.  The preschool director ran up to me and asked what was wrong and offered to help.  Trying to hold it together I smiled, thanked her and simply said Annie is having a difficult day today.  I kissed Gracie and tried to get Annie and myself out of the church as quickly as possible without it looking like I was trying to get out of there as quickly as possibly - God forbid anyone ever see how close I am to tears.  I get Annie and her chair back into the car, constantly trying to offer words of relief to my suffering child, time to drive to therapy.  I plead with Annie to tell me what's wrong and to try to calm down.  I turn on her favorite video and that doesn't seem to help.  I look at the clock, Annies been screaming now for an hour and it doesn't seem like it's going to let up any time soon, we are 20 minutes away from therapy and it starts in 20 minutes I think to myself "if I can just make it 20 more minutes I can hand her off to the therapist and maybe she can calm her down" - a desperate thought for a now very desperate mommy.  I try to stay calm and keep my focus on the road as Annie's tantrum intensifies and she starts to cough and gag on her own saliva because she's screaming so intensly.  I start to think "Oh God should I just take her straight to the ER, she looks like she's in such extreme pain but she's in pain most days so how do I know if this pain is intense enough to take her in?" "What if she's just so exhausted and rett syndrome is preventing her from naping, could this all possibly be due to sleep?" "did I push her foot into her boot to hard?  Could I have broken her ankle?".  I finally get to therapy and park.  I frantically call Scott, I get the voicemail - CRAP, he's in a meeting.  OK, our code for emergency is to call twice right away, so I call again he answers (thank GOD!).  I try not to sound like such a lunatic and tell him all that's going on , of course he can hear Annie in the background, his suggestion is to take her to the pediatrician (why didn't I think of that?  I drove past the peds office 30 minutes ago, it's so hard to think when she's screaming like this!).  I tell him that she's been screaming now for 1 hour and 20 minutes and I don't feel like I'm in a position to continue to drive her around and back to the peds office.  I tell him to forget and that I'll think of something - beyond frustrated now that he didn't put on his superhero cape and come rescue us from this hopeless situation.

It's time for therapy and I decide that I'll take Annie in and ask the therapist if she thinks I should take her to the ER (thankfully we have been at this therapy for over 4 years so I feel comfortable enough to ask the therapists their opinion).  Again I grab Annie out of the car, and again my jacket gets the bulk of Annie's bite, "I love you Annie" I tell her.  I try as casually as possible to wheel this out of control child into therapy, people look at her in horror then look at me as if to say "why aren't you doing anything?".  I meet their stares with a calm composure and a smile all the while inside wanting to scream at them "You have NO idea!"  I sit in the waiting room and recieve more stares from parents and 2 years later (actually it was 2 minutes but it felt like years) our PT comes out.  She kneels down in front of Annie and says "I could hear you all the way in the swing room, what's wrong".  I calmly tell Amy that it's been a really tough morning and I'm not sure what's going on.  We take her back into the therapy room, I get her out of her chair and jacket and Annie finally starts to calm down.  I hold her and rock her while Amy gets some toys.  The screaming has calmed back down to a moan and I tell Amy that I think she's in pain but I don't know what to do.  Amy agrees that she's in pain and we start to try moving her around to find the source - of course that comes up with nothing (by the way, this is not an all that unusual day so while I'm familiar with this behavior I'm not "used to it" by any means.).  We decide to proceed with therapy.  Annie's been in therapy for over 4 years, there have been a handful of times that other people have taken her but the vast majority it has been me and I have stayed to watch each and every session.  Today I physically couldn't stay.  I start to feel my mental exhaustion, I start to feel a lump in my throat, I feel weak and shaky, I tell Amy that I'll just go sit down in the waiting room adding that I have this really great book I want to get back to so she doesn't think that I'm on the verge of completely breaking down.  I get into the waiting room and the same parents are there, I see their looks - their ones of pity - my kid is by far the most disabled of any child here and a screaming fit on top of it, oh, poor woman.  I want to scream and tell them not to pity me, we're fine, just having a tough day.  I sit down to "read" my book but really just open it and go through my thoughts.  All I want to do is breakdown, scream, cry, run away but I can't head to the bathroom and cry silently in the stall because what if Amy comes out and Annie needs me.  I swallow the huge lump in my throat and play around with my phone (that get's no reception but no one knows that, I just need something to fumble with so no one tries to talk to me).  The session is now almost over so I head in to see how Annie's doing, her face is blotchy, she has huge purple bags under her eyes but she flashes me a smile.  Amy tells me that she's calmed down and has been productive but is moaning and thinks she may still be uncomfortable.  I'm angry, angry that Annie had to go through that pain, angry that I had to hear my daughters suffering for an hour and a half and angry that we're dealing with rett syndrome, I'm spent.  I look at Annie and say to her "we need to get Amy's home number so we can call her next time you throw a fit" trying to make a joke so Amy doesn't see that at this point I'm just destroyed.  I thank her, get Annie dressed for the outdoors and head to the car, Annie starts to moan. I get her into the car and kiss her blotchy, tear stained cheek "I love you so much, I wish God would let me take your pain", Annie looked me in the eyes, gave me a half smile for a split second then closed her eyes, opened her mouth and started screaming in pain again.  I started to cry too but forced myself to stop, we have to pick up Gracie and after the spectical we made of ourselves in drop off I don't want everyone to see that I've been crying in pick up.  By the grace of God Annie falls asleep on the way to pick up Gracie.

The rest of the day was on and off screaming fits, there wasn't much relief, not from her videos, not from medicine, not from snuggles.  She refused to eat and had breath holding spells throughout the day.  There were times of intense painful screaming fits and then the pain seemed to lessen leaving Annie just moaning quietly only to intensify again to a full out scream.  Annie would sleep for a few minutes then wake up screaming, she would smile occasionally only to start moaning again.  I hate Rett Syndrome.  I wish I had a clue as to what was causing the pain, I just want to know so I could attempt something and not feel so helpless.

I have meet so many special needs parents through blogging and have learned so much from all of you.  If you have any thoughts I would appreciate them.  If anyone out there has a clue as to where the pain is coming from I would love to hear your thoughts.  I know that there are some things that we just need to accept with Rett Syndrome and maybe this pain is one of those things, if so I would also love to hear any ideas of how you cope with your child's pain.

Today was a difficult day.  Tomorrow will be better.