Weaning

CPlondon

My 3.5 month old has recently been diagnosed though we have not had the MRI as yet. I have so many questions and really looking for some hand holding and guidance.

my first question is on how to approach weaning given he has reflux. I have heard many end up having to be given food via g-tube as they don't take to the food. What are your views? Should I delay weaning as much as I can or bring it forward due to reflux? Who should I be contacting in NHS for advice on this? 

ScopeHelpline

Hi

It is usually a difficult and bewildering time when your child has a new diagnosis and of course you will have many questions now and as time goes on.

Weaning can be more difficult when a child has disabilities and particularly if the suck and/or swallow reflex is not so good or uncoordinated. Reflux can make this trickier. Weaning is very specific to each child and I think you really need more specialist advice from someone who can see how your son feeds.

Have you spoken about this to your health visitor, as usually they would be the first general port of call regarding feeding, although they would ideally need experience of children with disabilities & their feeding. Have you also mentioned this to your GP...they could/ should also probably refer you to an NHS Speech and Language Therapist (SALT) who are the experts who deal with feeding issues as well as speech.

It can be difficult when your child is so young, to tell how they will develop and it is only over time and looking at how they reach developmental milestones that this becomes more apparent and what issues they may or may not have. Not all children need a gastrostomy although some do, and others may have this and also still feed a certain amount orally.

Just to make you aware, if you would like, that you can also contact the Scope Helpline and we can potentially refer you to a regional worker, for general advice on cp, statutory services and local support groups etc. This can be quite useful for parents when their child is first diagnosed with cp and you can talk through some of your questions.

We also have a handy little  parent guide regarding newly diagnosed children and we can send this out to you as well if you are interested.

The helpline number is 0808 800 3333 (9am - 5pm Mon - Fri) or you can email us if you prefer:  helpline@scope.org.uk

Best wishes

Scope Helpline