reflux or breath holding? help needed!

[nikkihawxwell]

I would like some advice and help as I am so worried about my four month old son. About four weeks ago my son was in his car seat, we were about to go out and I turned to look at him he was purple,his eyes were bulging out of his head and he wasn't breathing. I quickly got him out I tried to blow in his face but no response, he didn't breath for about three minutes I called an ambulance and ended up giving him CPR. He went deathly white and all I can describe is he slipped away. I eventually got him breathing again but he wasn't there behind the eyes. Ambulance come and we went to hospital. They said it was reflux and we were sent home with gaviscon. He then did it again on the Friday we ended up in hospital, they did loads of tests, each, eeg and blood tests, all normal. They said it was possibly breath holding.

The problem is he is doing this about three or four times a day now, I'm scared to death of leaving him, he barely sleeps during the day but will sleep all night. It's the deathly white and floppy thing that scares me the most, it looks to me like he is having a fit but nothing showed up on the eeg but there again he wasn't crying then or when they did the ecg.

I don't know what to treat him for, I'm following rules for reflux but it obviously is making no difference it's getting worse! We have a consultant appointment in November but I can't live like this for much longer! I have three other children.

Has anyone had something similar?

[JiltedJohnsJulie]

I've experienced breath holding with my DS, but his was with pain. You really do have my sympathy. I've never heard of it with reflux, but I'm no expert.

Hade you considered paying privately for the Paed appointment?

[concernedaboutheboy]

Breath-holding? In a 4-month old baby?? I really cannot believe it is that.

It may be apnoea related to reflux but if it is, gaviscon and sending you on your way is not going to cut it.

I think you need to go back to hospital and he needs to be admitted or something (disclaimer: not a doc but have had two kids with reflux.)

[JiltedJohnsJulie]

I think its unlikely to be breath holding either. Our DS was very throughly tested the last time he was admitted and all of the doctors said that breath holding starts at 6 months and should be gone by 4.

[Bordersmummy]

I had a breath holder, from 8 months though and it was scary but not at all like what you're describing. I would strongly suggest that you ask your GP on Monday for a referral to a paediatric consultant. Or even A&E.

Is there any way you could film it happening to show the doctors?

[ubersquiz]

Be prepared to face a lot of opposition too. The ignorance and refusal to believe you will be astounding. You may also end up being labelled a pushy parent too. But stick to your guns.

Our LO had difficulty with vomiting all the time after breast feeding. It took a year of fighting and rejecting silly ideas they had before he was finally sent to great ormond street and diagnosed with EoE. As one poster said if you can film it happening do so. Our LO's problem wasn't as visible so sadly that wasn't an option for us.


We kept getting told "well he looks happy enough" and other nonsense. Don't take any of it until you have a solid answer.

I wish you the best of luck.

[Pocket1]

I can't help with the breath holding but dd had reflux (caused by cows milk allergy) at a similar age - we had omeprazol which was far better than the gaviscon we were initially given.

I second the suggestion of being pushy and demanding better help. And of seeing a paediatrician too

[JiltedJohnsJulie]

Have you been to the GP yet and asked for a referral?

[concernedaboutheboy]

Nikki, did you ever get any further with this? Just wondering what it turned out to be and if you were getting help from the medical professionals.

[astewart]

My little boy did this on his first night home, we were sent home with gaviscon but I didn't feel it was very good. We switched to cow and gate comfort milk and he was fine with that.
What a scary time for you. Id certainly be asking for some kind of second opinion. Especially given that this happened in a car seat (sat up?) my baby was laid flat.

[SquishSquasherHellHounds]

What happens before he does it?
I only ask because a friend of mine's dd does something like this. It's called reflex anoxic seizures. Might not be the same at all, but it's something to consider.

[concernedaboutheboy]

Squish, that's odd because I also know someone with RAS and it also came into my mind that it could be that. however, the boy I know with RAS only has seizures once in a while - not multiple times per day.