do you think it is an over reaction/waste of time to go to a and e for this?

[veryworriedme]

my dd is almost 6 months and has had serious feeding difficulties since birth. she is under a gastroenterologist at great ormond st and has had a number of procedures to try and establish what is wrong. one symptom (cause?) has been her inability to poo - she has to have a suppository every day and it was then only a thimble full of watery poo. she has had botox injected into her rectum which didnt work. her latest procedure was a barium swallow and either this or starting her on solids has caused a real problem. she always had real effort pooing but now vomits with the effort to the extent she cant breath properly and panics. she is clearly in a lot of pain and doesnt want to feed (well she never wants to really). it is impossible to just speak to her gastroenterologist and the next procedure is not for 3 weeks (a gastric emptying scan which frustratingly should address this very issue). would the doctors at a and e think we were wasting their time with what i suppose is constipation? is there any point given the complexities of her med history and the fact she is already under great ormond st? so sorry for such a long post, i am just worried she is going to do herself some harm by straining so much when we know she has some sort of problem with that area. it is only 3 days since the last poo but that one ended in her choking on her vomit so cant imagine she is too keen to repeat! any views on whether i am being too impatient would be very much appreciated.

Not appropriate for A+E.
What about seeing a different consultant privately?

Thanks ragged. our gp has done a referal for a second opinion which we are waiting for (although not sure how to better great ormond st!) and yes perhaps the right thing to do is to chase that instead. do you think not appropriate for a and e because not serious enough or because of complex history?

i think if you go a&e you will end up having to retell your dd's whole medical history and then probably tell them what you have tried already etc.

Could you call your consultants secretary or gastroenterologists secretary to get a mesage to him/her? This is something they are used to - being contacted by parents in mean Or try calling GOSH and speaking to them? This all sounds scary for you and i'm not surprised that you want some advice. Good luck.

do you not have the number for the secretary of her consultant at great ormand st? if so i would be calling them and i mean calling them everyday, a number of times and insisting on speaking to someone.

i think there is too much history for a&e but if desperate it may be worth trying tbh (have a friend whose dd has stomach issues) they have had to go the a&e route and now have an 'open pass' to the childrens ward for when their dd has issues.

it sounds like there is something going on that needs to be dealt with asap, he choking on vomit whilst trying to poo NEEDS to be sorted, is her stomach distended, has a gp examined her tummy to see if she feels constipated etc?

I don't think a&e is the best option at best you would Probably see a paediatrician who doesn't specialise in gastro and unless she I'll enough to be admitted I think they will send you away to wait for your referral.

Sounds awful for the poor little thing and I can understand why you are desperate to try any avenue but I really think a&e will be a long winded, stressful dead end

Maybe I have wrong picture, it just sounds like she's not in urgent need right now.

You could phone NHS-direct for advice, they are very cautious ime.

To see someone privately you don't need to go thru your GP, just google to find a few likely doctors with seemingly appropriate background & phone their office direct to ask if it's the kind of case they could advise on, & what they charge for private consult. Could probably get an appointment for next week.

Are you worried about her today? Can you phone gosh for advice - maybe speak to someone on the relevant ward? Worth sorting out open access to ward if this will be ongoing.

Are you worried about her today? Can you phone gosh for advice - maybe speak to someone on the relevant ward? Worth sorting out open access to ward if this will be ongoing.

sunshine and 5madthings - i did email the secretary after dd had a fit while vomiting and she said she would pass it on. there is a bit of a history of her not passing things on but i also suspect our dd's consultant is probably busy with a seriously ill child. there is no other method of communicating with the consultant. catsdontcare - this exactly my concern although i suppose i am just hoping they may give her something to poo and give us advice on what to do if she cant breathe again. ragged- i guess the urgency is really that she is so much worse. we have had a miserable baby in pain for 6 months but the convulsions while trying to poo has scared us. we are just so weary of it all we dont know if this is a "straw that broke the camels back" over reaction. my experience of nhs direct with ds is the same, that they always say go to a and e - i trust mumsnetters more i suspect! going to get on with the second opinion asap, just have to make sure is acceptable on insurance as if had been self paying so far we would have had to sell our house!

You may only have to pay for initial private consult as extra opinion; then get a different treatment approach back on NHS if that's what suggested. That's how the system often works.

ok ragged, i see what you are saying. good idea. i have managed to speak to a nurse at GOSH who says should go to a and e if concerned as you cant be admitted to a GOSH ward as an emergency. i think the general view is to try and sit tight for a second opinion or communication with her gastoenterologist so will try to hang on unless she gets worse. thanks everyone for taking the time to respond.

Hi very. Are the convulsions new? If so, and the consultant does not know about them, I think you ought to contact GOSH or NHS direct for advice. FWIW, I don't think you are being impatient at all. Your dd is so young, if you feel she needs to be seen then go with your instinct.

Hope all goes well.

Well despite what I said about hanging on we are just back from a and e! It was a bit pointless as they didn't know what to do but at least I feel we have done what we can and come Tuesday I will keep emailing the consultants secretary again.
Oneandnomore, yes it is the first time and thanks, so hard to keep objective.

That sounds awful- so for you. I think you probably did the right thing in taking her to A+E- faced with my child in pain/ discomfort, I would do anything to try and have it relieved

I agree with keeping at the secretary (is there no phone no?) Sometimes you need to push (politely) with the NHS. Will be looking out to see how you get on- all the best x

veryworriedme - whilst this doesn't answer your immediate problem I would ask for open access/green card to the ward at GOSH or to your local children's ward. Basically this should mean that you can get seen by a paed fairly quickly without resorting to A&E. If it's your local children's ward then they would be able to call GOSH for advice. We used to have this facility at our children's ward (dd's specialist is in Birmingham so a good hour's drive away at least) and it mean't we could bypass GP and A&E.

What advice have you been given re the seizures, how long did it last?

Our DD has severe febrile convulsions but we have always been told by paramedics that they would rather arrive to a baby or child that has got better and is alert rather than not be called to a child that doesn't come round iyswim?

We follow this rule. If DD seizes we ring 999 if it lasts longer than 5min, or immediately if we are concerned her breathing is compromised. We now carry medication but we also have an open pass to children's assessment unit which we can call at anytime.

On your letters for GOSH have you any email addresses? Our paeds and neuros do read their own email and we have found that a useful means of communicating in the past.

I hope you LO improves quickly, it seems like you have had to wait a terribly long time to get some answers

Oh and the one time our green pass had run out it took A&E an hour to stop the seizure and even then only when a children's ward on call paed took charge, she went into status and was paralysed for 24hours as well as regressing all skills for two months. Horrendous. Childrens unit have always got her to come round within minutes.

Keep badgering.

veryworriedme - I'm so sorry you are all going through this & I hope you get a solution really soon x

Oh wow, thanks for your responses and advice everyone. I am certainly going to ask about this green card thing.
Slowburner, we are not in that league thank god. I don't know how I would cope with what you went through. I am not sure she is fitting. She lost control of her arms and legs but I think it was panic at not being able to breathe. You feel so useless. Bizarrely my reaction was to put her down so I could see what was going on but my husband was shouting " pick her up! Pick her up!" ( he was holding our scared toddler). Hmmm don't think I am very good in a crisis.

Morning :)

Actually, I think you are better than your husband in a crisis!! YOU were wanting to observe her behaviour then do what you could to help, he was panicking and just wanting you to pick her up, which actually doesn't achieve anything (other than to soothe your natural instinct!).

I would have called an ambulance.

You have to get hold of your (DD's) consultant ASAP - you can't live like this!

I would also have called an ambulance. If I may be so bold may I suggest the following?

Ask your HV to book you on a children's first aid course, if will give you the confidence to know how to deal with a very small baby or child if they stop breathing. I did one when DD was going through a good patch and by sheer coincidence was using the skills a week later. I was much calmer than my DH.

Secondly I would always put a child onto the floor if it was safe to do so IMHO you 100% did the right thing. We put DD onto a blanket spread out so it is at least soft. My DH panics and shouts when scared.

As for over reacting, your baby cannot summon help for themselves nor can they tell people how they feel, it is your job as their mum (or dad) to get that help, I have grown balls of steel and I always carry a summary sheet of DD's meds, condition, consultant details and condensed history. If I give it to people they read it and take it in. Then we can jump to what they are going to do now, rather than spending precious time detailing the past history.

i totally agree with Slowburner. next time (and there will more than likely be a nxt time) u ring for ambulance ( dont take by car yourself) get medical help ASAP. this with her other problems may be linked , or not, but your baby needs help.

get on the phone. ring that secretary every day until you get the help your child needs. you are your childs champion!