22q and leg pains

 Bella is in so much pain she was crying and screaming. I had to put her in the tub and use Epson salts. Then I rubbed her legs with bengay cream and worked out her spasms

we see the pain specialist on the 23 and she has pool therapy again so that will help give us more of a direction to go then what we are currently doing. I am hoping that we will adjust and we can get a med added or her current med which is Backflen at a low dose.

We kept her active but with all the cold weather she had to stay inside a lot and has not had a lot of changes to run and get out and play so the one day she was able to go outside it was 3 degrees now it is 20 I thought it would be a good idea to let her go outside burn her energy off and work her legs. The specialist say that her legs being active will help so that's what I was hoping. That is now what happen tonight. Not at all.

Today she went sledding with her friends and came in and she was super sore all the climbing up and down the hills and running around in the snow in her boots. Her boots are insulated with the memory foam and high arch support water proof all that jazz. she has excellent snow gear coat, mittens, scarf, hat and gloves and is bundled up like a cute Eskimo she was super excited in a good mood.  Bella has mention leg pains over the weekend and during the week a few times from when she got home from school but nothing like this. Bella was moody and her legs were so sore she cried so hard. I felt so helpless. I'm not sure how my husband feels about any of this but we went to dinner to help her relax get her mind off it for a bit which it did and then we went to Wallgreens to pick up her adhd medication and some more bengay cream and epson salts for a nice bubble bath with the leg and back rub to follow. See this is the only treatment plan we have been given to by doctors so far.

The thing that sucks is...

I have to keep her home tomorrow there is no way she will cope at school with how much pain she is in. She finally fell a sleep next to me watching Netflix with me on my laptop.  Bella begged to stay home with how much she hurt and yes she missed school but those are for her medical appoitments just for treatment of her leg pains that I am talking about right here in this blog post. I wish I had a magic wand and could take away her leg pains. I wish I had the answers and I wish when I bring this up with others that I didn't hear do megasium or this or blah that I mean she is ten don't you think we have done it all been there done that by now. Even iron tablets and such oh and my favorite have her just drink water before bed. Really these are cp spasms they are not going to go away with a pill or a little leg rub. I would love to be able to prevent the pain or at the very least have something we can give her at her age that will work well to help her. What ever it is I am doing so far it is helping but it is not taking it away and making her better. Bella even started to ask about what it is that makes her a little different from some of the other kids in her class. Bella said last week she was tired of being clumbsy.

Don't get me wrong we have a ton of good moments but these leg pains have been here since she was born they have led up some times and some nights there is no pain but latley her leg pains have been a level ten with the weather changes from extreme cold of 3 to tonight temp of 20.

Having cerebral palsy and 22q is not easy for anyone and I can't imagine all Bella thinks about all of it Having the pressure to keep up with her school work and doing these appointments poor kido just went outside to do typical fun kid things in the snow and was in so much pain.

It took a bubble bath (thank you mr bubbles) it also took epson salts dr teal is the best, it took bengay cream which smells they gotta fix that so kidos who need it can use it with out saying pew it stinks like peppermint.  I had a heading pad and blankets on her legs for weight and lots' of snuggling and Netflix. 10 pm and she is sound a sleep.

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I am looking very much forward to her appointment on the 23 with the pain doctor and her pool therapy session these much needed medical appointments help her way more then anything else ever could. I am hopeful this post can help others who are going though the same things at night time. kudos to all the other moms and dads and parent figures who are up at night with kids with sever leg pains weather it's from cp (cerebral Palsy leg spams) or 22q issues or in Bella case both. The 22q will always amplfy anything else.

until next time friends have a blessed night sleep and may you find comfort in the fact you are not alone and not everything is all sun shine and roses in the Ripsam house hold.

This is our truth the good bad and the painful

 

tell me what's your truth? Do you deal with leg pains too ?