5yo needs a PEG, help explaining

louise85

Hi
my 5yo son (ASD, PDA, ARFID, etc!) needs a PEG because he refuses oral medication. 

His digestive system is defective in some way, plus interroceptive issues mean he isn’t toilet trained at all and cannot pass BM without daily laxatives. He has severe anxiety. He’s been into hospital for manual disimpaction and we are currently giving suppositories and enemas (when he’s asleep, otherwise he would refuse). 

The PEG will make it much easier for us to get laxatives into him, completely bypassing his mouth, and also means we will be able to administer calpol and antibiotics when necessary. 

I have come to accept that the PEG needs to happen and that it will be temporary and may mean that one day he can be toilet trained and lead a more normal life.

What I’m really struggling with is how to explain to him that it needs to happen. I’ve tried to discuss it but he instantly shut me down and didn’t want anything to do with it. He will tear up or draw on social stories, he will blank me completely if he doesn’t want to engage. He’s very intelligent and capable. 

I hate the thought of him waking up from the operation with this tube that he doesn’t understand or want, and I’m afraid he will try to pull it out. I feel desperately sad that this is going to happen to him without his consent. 

Please, if you’ve been in this situation, tell me how you dealt with it and what happened. Did your child come to accept the tube?

L_Volunteer

Hi @louise85. Welcome to Scope's forum. It is great to see you have joined us. The first thought that comes to mind when responding to how to explain something is the following question:

• What is your son's comprehension level and is there a particular method he usually finds helpful to learn new things?

It could be that social stories would be helpful here, or different terminology for the same thing. Similarly, how much does he want to know about it?

He might like to feel like he knows everything about it and, in this case, it would be useful to explain the implications. He might not be bothered and might not want to hear about it.

You know your son best so I trust you to ask yourself these questions and explore potential ways to explain it to him effectively. If you wish to talk about it though we are here for you.

I guess, other than accepting he doesn't want to hear about it and will process it at his own pace, you might want to discuss your concerns with the health professionals. 

They can support you in managing this when it first happens. They might also involve a play therapist or other professional 

Cher_Alumni

Hi @louise85 and a warm, belated welcome from me. How are you and your son doing?

I'm just checking in to see if there'd been any progress with the PEG feed and if you'd broached the subject with him? I can only imagine how difficult you've felt approaching it, and as a mum, I get it. You want to alleviate as much worry and upset as possible, and I'm sure you've been brilliant throughout, doing what is best for your boy. 

There are some online children's picture books that I've found to help talk through PEG feeding such as this: Timmy the tiger and his tummy tube.

If you have time, it would be lovely to hear how you're both doing. Take care and wishing you all the best.