Pediatric pain management

[luvsviola]

Hugs mama. Maybe you will get admitted, and things will actually get accomplished.

[Fashionably Green Baby]

[Sweet_Fantasy_Fox]

I hope they help him quickly

[mekat]

Thanks for the support. I have a diagnosis for the recent event but no actual reason behind it.

He had an intestinal prolapse and it cut off blood flow to part of the intestine. What I thought was swelling was actually his intestine telescoping out of his colostomy site. They claim it was caused by a GI bug but he isn't sick so I don't buy into that theory. He did have more liquid output but it wasn't unusual. I even questioned senior pediatric staff resident about it and he admitted Alec didn't seem ill but couldn't offer up any other explanation of why his intestines would prolapse out of his stoma. Anyway they forcibly pushed the prolapsed intestine back in and sent ds home. They gave us danger signs to watch out for and we have to go back to the ER if it prolapses again.

[mekat]

Originally Posted by Brayjjanna Ive always wondered this except my 3.5 year old cant tell us. He's basically screamed most of his life. The first 2 years was 24/7. Now it's half the time. They say there is nothing else we can give him to help his pain or whatever is causing the discomfort. He arches and flails to the point you can't hold him. Sadly tynelol with codeine at his allowed full dose does nothing. Hugs mama!

I'm sorry they haven't done more for him.

My son is completely nonverbal he does use AAC but is not always reliable. He is a fairly reliable pointer though. I at first tried the traditional black and white pain scale but because of his vision impairment he had difficulty reading it so I found this pain scale on the internet that used bright colors to rate pain and he can read and point quickly to where he is on the pain scale. Here is the one we used; It is called a Visual Analog Scale.

It sounds horrible but when he first was Rxed the Coedine I started to refuse to administer pain medication unless he indicated in some way he was in pain. We started out simple "you want mommy point to me or if you are in pain and need something to make it go away point to the medicine bottle." It resulted in a few tantrums during pain bouts but I felt it was important to teach him he has to communicate his pain.

We are slowly progressing and refining his pain communication. Now he is good at pointing up if he has pain in the bony area of his chest (reflux) or pointing downwards if he has pain in the soft area of his belly(lower GI pain). The analog scale was something we only just started to do in the last few weeks so now I have his input into how severe it is instead of just observing and rating it myself based on what I see. Although I will say when his pain is off the charts severe his communication regresses severely and I can only get a point at the Rx bottle response.

Any way this is what has worked for us, every special needs child is different and what works for us might not work for you. It was a long process of over a year just to get him to communicate that much and I am still working out ways to refine the communication technique.

[Brayjjanna]

Originally Posted by mekat I'm sorry they haven't done more for him. My son is completely nonverbal he does use AAC but is not always reliable. He is a fairly reliable pointer though. I at first tried the traditional black and white pain scale but because of his vision impairment he had difficulty reading it so I found this pain scale on the internet that used bright colors to rate pain and he can read and point quickly to where he is on the pain scale. Here is the one we used; It is called a Visual Analog Scale. It sounds horrible but when he first was Rxed the Coedine I started to refuse to administer pain medication unless he indicated in some way he was in pain. We started out simple "you want mommy point to me or if you are in pain and need something to make it go away point to the medicine bottle." It resulted in a few tantrums during pain bouts but I felt it was important to teach him he has to communicate his pain. We are slowly progressing and refining his pain communication. Now he is good at pointing up if he has pain in the bony area of his chest (reflux) or pointing downwards if he has pain in the soft area of his belly(lower GI pain). The analog scale was something we only just started to do in the last few weeks so now I have his input into how severe it is instead of just observing and rating it myself based on what I see. Although I will say when his pain is off the charts severe his communication regresses severely and I can only get a point at the Rx bottle response. Any way this is what has worked for us, every special needs child is different and what works for us might not work for you. It was a long process of over a year just to get him to communicate that much and I am still working out ways to refine the communication technique.

Thanks. He has no motor ability and we have found no way to communicate. It's always a guessing game. His doctors say there is nothing they can do to help and its because his brain damage is so severe. He's missing most areas in his brain.

[mekat]

My son's brain is fully formed but he has microcephaly. His head is about the size of a 6 month old infant. If your ds is cognitively aware enough there may be hope eye gaze, sip & puff switches etc.... but even if he learns how to use such a device it will likely take years of therapy and persistence.

Unfortunately I have found most speech therapists have very little interest and ability for that matter to help a multiply disabled child learn communication skills. It requires a lot of thinking outside the box when a child has vision problems, physical problems and cognitive problems. Most everything my ds has learned about communication has been directed by me and taught by me. I feel very lost trying to handle something I was never trained to do but every therapist we have tried to consult has been grossly inadequate with helping him achieve any long term communication goals so I have mostly had to do it myself. I am also having the same problem with OT. He needs help with fine motor and finger isolation and the main reason why he can't use the AAC reliably. The cognitive ability is there but the fine motor isn't. I have tried both private and school therapist and keep running into the same road block.

[Shaylee]

Just stopping by to say I'm still thinking about you guys.

[FindingMercy]

Your dedication to your son is beautiful.