CP?

[AP]

It was always a great possibility that Alex could be diagnosed with this after her brain bleed at birth (grade 4) but as she grew she met physical milestones albeit it's always been clear she has a weaker right side, it's never affected her and only me and DH notice the most.

We've had huge issues with sickness since she was born, and it was only tonight that we discovered that Phil Nevilles daughter had a lot in common with Alex in regards to feeding. They both had great feeding difficulties with bottles and food, not handling textures and always vomited (this was to do with mouth muscles?)

It led me to do some research to find this, and reflux, is very common with children who have neurological issues (CP,epilepsy )

Can anybody elaborate on this or does anyone have any knowledge? It seems to look like a missing puzzle piece but we're not sure if it's the right one?

 

[May.Baby.x]

My son has CP, also with mainly right sided problems. He also has reflux and has done ever since he was born, a very sensitive gag reflex, and dysphagia (swallowing problems).
I thought the reflux improved when we started solids as he was vomitting less - this is because the stodgier the substance, the easier it is for a baby to hang on to it.
Since eating solids he grunts and goes red faced and seems to get very frustrated during feeding. I have learned since attending Speach Therapy that this is actually a symptom of reflux, so we have started medication again.
He can also be very funny with different textures and heats, and sometimes will completely refuse to eat something hes been previously fine with. He is 8&1/2months and still on 4m+ food. He also chokes/gags/coughs when feeding and drinking, although this has improved and now is more so when drinking water/juice which he still struggles with.

Intially my GP/HV refused to acknowledge his 'reflux' as he was gaining weight so they didnt see it as a 'medical' problem, only a 'laundry' one - apparently! It has only been since attending physio/neurologist that we have come to know that it is all linked. So in a straight answer quoted from his physio 'It is very common for children with CP to have feeding issues and reflux'.

Hope some of that helps. How old is your daughter? xx

 

[AP]

Thank you. She is 2 1/2 now but what you describe is what we dealt with in the first year/year and a half. It never improved until them, we were stuck on 4m foods too. From here it improved and she can try most foods but sometimes it's gagged back up.
She's sick almost daily and it affects her and our day to day life. No answers as yet but we do have a dietician tomorrow and speech in a few weeks. We have been referred to physio which we should hear from shortly but after reading up it does all seem connected.

I really appreciate your reply x

 

[Marleysgirl]

Just a note to say that Andrew has similar feeding issues (stuck on puree food, still only drinking from a bottle refusing to self-feed or even handle food) but not the reflux. When you see the dietitian & the physio, I'd emphasise the coincidence of reflux in CP symptoms if I were you.

 

[AP]

I will do Hun. Thanks girls. I will ask the possibility from the dietician tomorrow

 

[AP]

I discussed it briefly with the dietician (she wanted to concentrate more on her diet obviously) and she agreed and suggested it may be possible and it could be absolutely right that she is sick due to neurological issues, since is is developmentally behind and has no speech too. She says I should speak to the gastro team, and i need to chase my physio app up too.

 

[sun]

I have no experience, but I hope you get some answers for this. It does sound like a real possibility. We recently had a breakthrough with LO's speech issues and it was because of an additional diagnosis that changed the way they were treating him. So the more they know, the more they were able to tailor his therapy and it has made a difference.

I know that Alex was waiting for speech - is she in it now? How is she doing? Sorry - You probably mentioned this before but I was off BnB for quite a while so just catching up!

 

[AP]

Hey sun!

She began a weekly course for one month only, and she was paired with another little girl. Alex doesn't like being enclosed in hospital rooms and howled through each one we attended.

We haven't had another appointment , til one coming up this month. I've think I've heard one word in context (Daisy) but with the way she babbles it can be difficult to tell. Never heard it since either.

The appointments benefited me more, I learnt stuff to try but nada.

 

[AP]

Thought I'd update: we now have appointments with the physio, GI and her community care team in march, hopefully we can work something out

 

[Midnight_Fairy]

Good luck xx

 

[DanielleM]

Hi. I have son who has CP, he is 7 years old now and it is mainly his legs that are affected even though he is quadraplegic, but his arms and hands are not too stiff and can use them freely, it is more his fine motor skills that are affected on the top half. Like you we were unsure of whether he would talk or not and around 2 and half he began talking, and now he has perfect speech and has not been under speech&lang for years. As for the eating, gagging and being sick side of things, E has never really been affected by this it took me a while to get him from puree to lumps but we achieved this before he was 1. As you know CP affects different children in different ways but I have been attending Conductive Education for children with CP so have met many children with CP and yes what you are describing about the textures, lumps, gagging and throwing up is a very common problem that the parents have described.

If you want any more advice please PM me. xx

 

[sun]

Hey sun!

She began a weekly course for one month only, and she was paired with another little girl. Alex doesn't like being enclosed in hospital rooms and howled through each one we attended.

We haven't had another appointment , til one coming up this month. I've think I've heard one word in context (Daisy) but with the way she babbles it can be difficult to tell. Never heard it since either.

The appointments benefited me more, I learnt stuff to try but nada.

Sorry I just noticed this now! I agree the appointments have benefitted me way more than my LO. Bun's last few appointments have just been him refusing to do anything (he has a new therapist) so I hope in another month or so he will be more comfortable. It really depends who the person is though - with some people he is great and others not so much.

Hope you are all doing well