Son in a lot of pain at night - any help, ideas or suggestions for helping?

TommyQ

Hi everyone. 
I have a little boy 3.5 years old. He is having a real problem with increased tone in his legs.
He has done 2 sessions of BOTOX injections. 
Around Christmas last 2 years .
Also he is on baclofen morning and night. He has started to get excruciating pain at night as we settle him for bed.
Very hard to watch him suffer so much. 

Any help ideas or suggestions would be greatly appreciated.
Also anyone with first hand experience with selective dorsal rhizotomy that can go through the experience and how it's benefited. 

He is beginning to want to exercise and is getting really strong in his trunk . Can stand aided but when he goes to step his legs pull across fouling one another in his steps . 

He is so happy and a joy to be around, but is getting really frustrated and lashes out  scrawls/ pinches / squeezes when in severe pain . 
We don't know what we can do. 

thejollyroger

Good to hear you have joined as well. I just did that! Unfortunately I don’t know anything about the conditions your son has but I am hear if ever you just what a blether about life! Welcome.

TommyQ

Thanks @thejollyrodger. 
I just figured out that I should have posted in the C.P forum. I am totally not up to date with technology .

chiarieds

Hi @TommyQ - Welcome to the community & thank you for joining. I'm very sorry to read about the pain your little boy is suffering, & I'm sure you're suffering too; it must be most distressing.

It's absolutely fine that you posted here, as I can tag @Richard_Scope who is our CP Specialist information officer, to ask for his advice. Thank you, Richard.

TommyQ

Hi Chiarieds 
I didn't really know how to navigate the discussions only figured it out after posting first time. 
Richard has been chatting to me and has been very helpful. 

Regards 
Tommy

steve51

Hi @TommyQ

Good Afternoon & Welcome it’s great to meet you today.

I’m one of the Community Champion’s here at Scope.

It’s good to see that you have meet Richard as he will be great for you.

Please please let me know if you need any further help/support??

@steve51

Chloe_Alumni

Hi @TommyQ, just wanted to check in to see how things are going.

TommyQ

Hi @Chloe_Scope
Thank you for checking in.
Hugo is still waking 2 or 3 times a night but isn't going into a hysterical state.
Cries a little but settles easy enough compared to an hour or more each time previously. 

He will be up to the full amount of baclofen this coming week so we hope this helps.

He is also on a medication to reduce drooling as it was impeding his speech , stopped chest infection and reduced need for bibs for just meal times rather than 20 bibs a day previously. 

We we're beginning to think it was bad dreams due to these meds .
We heard about BOTOX to help with easing of drooling. I was going to ask the community if they had any experience with this kind of treatment. 

Thanks so much for thinking of us Chloe

Chloe_Alumni

Hi @TommyQ, I'm really glad to hear that the baclofen seems to have helped during the night, and that you can hopefully get some rest as well!

I have had botox injections in my legs to reduce stiffness in my muscles. Have you spoken to his doctor about the option of botox? It doesn't work for everyone, but they should be able to say if he would be a good candidate for it.