feel like im going crazy after paed diagnoses of my 5 month old - please advise or reassure me??

[mad4myboys]

ds2 is 5 momths old and i knew something was wrong with him very early on. I knew he had reflux (ds1 had it aswell) but took a while to get diagnosed etc. anyway after given meds etc i kept telling the docs something else was wrong. Paed finally agreed and almost 3 weeks ago he was in hosp having cameras put up and down him. camera down throat just confirmed damage to osophagus from reflux but when they tried to look into the bowel it was full of green sticky poo and paed said she couldnt see because of it and she couldnt take the biopsy she wanted to. anyway was given strong laxatives and told come back in 4 weeks for review. he was no different and so gp tried diff laxative which didnt work and then this week hosp over phone gave another which put him in agony. have just had another night sleeping on sofa with him in agony and writhing around. have rung on call registra who said i probably need to call back tomorrow but will try to get someone from surgical team to call today.

sorry that is long winded, trying type quick. WWUD?? On paper he isnt ill, weight ok, not dehydrated, tummy feels fine therfore they arent taking it seriously. Im at my wits end and cant cope another week like this. Im worried this could damage him if keeps getting left?? Any experience or idea what/why he has these probs?

Sorry I have no answers/experience with this, but sounds awful for all of you. Just didnt want to ignore and hope someone comes along who can help.

thanks

I would be persistant though, don't let them fob you off. Can you take him to an out of hours clinic today??

my main worry is CF. yes i know that may sound nurotic but a blockage and the fact thathe has been very mucousy since birth worries me. always had a cough that they have said is the reflux aswell. will be seeing an ENT specialist next month for the breathing/constant bunged up probs

mad4 - me again I think you're right to push this on. I'm sorry you have the CF worries but it makes sense to me to get the test for that (it's really simple) and to be able to hopefully put that fear to one side. You are not being neurotic and you know your child best.

I do know how you feel - my dd was ill for some time before being diagnosed with heart problems at 14 weeks. We were in and out of the hospital with them most often writing me off me as an anxious and overtired parent. I was both of those things but for very good reason [bangs head against wall].

you know the heel prick test they have at birth? does that test for cf?

m4mb are you in Scotland or Northern Ireland? If so, babies are tested for CF at birth via the heel prick. I don't think they are in England and Wales (can't be positive though).

I'm sorry you have all this worry and hope you get some answers soon.

The heel prick test only covers the most common strains I think and I'm not sure if it's a national thing in England.

no im south england. I think if i mentioned cf they'd just laugh at me as that is how it feels they already are

Please don't be afraid to mention something because you think you'll be laughed at mad4. It makes me so angry that they make you feel like that - the dismissive attitude of our GP nearly cost my dd her life. They are concerned enough about your ds to do the scope so shouldn't dismiss it out of hand. It's much less invasive than the tests he's already had. I don't want you to focus too much on the one thing (it probably isn't CF anyway) but sometimes the docs do need a push.

mad4myboys I'm with saggars on this, you must never be afraid to mention anything to the medics incase they will/ are laughing at you.

Remember the doctors are there for your son. We were sent from pillar to post for four years with DS2, all of the time with me just knowing that there was something amiss and being ignored. Last year we got his diagnosis of a chromosome abnormality, his life has improved immeasurably.

If your son is still in pain then I would phone again today and say you will go in via A&E if need be. Unfortunately sometimes for things to happen you have to take a very deep breath, put on your most assertive voice and insist they do something.

The Guthrie test doesn't routinely screen for CF in England, it only routinely covers Phenylketonuria and Congenital hypothyroidism.

Never be afraid to stand up for your baby, it can be hard at times but a wise Consultant once said to me that a good doctor should always listen to a parent's concerns because sometimes they can be right and the medical profession can be wrong.

thanks guys but rang the hosp again and spoke to surgeon registra (i think) and do you know what he told me? GIVE HIM CALPOL!!!!!!!!!!!

Im so angry i came off phone in tears. Basically said nothing he could do and that id have to wait till follow up appt a week tomorrow. Ds is hardly feeding but no signs of dehydration. One minute fine, the next screaming in agony. Im going to phone tomorrow morning and try complain but ive no idea who to?!

My dd is 6 months and her heel prick tested for CF. In fact my friend who's dd is 4 days older than my dd had a false positive. I live in Kent, but I don't know if it's different in other areas. Just thought I'd let you know that. I have no advice I'm afraid. Hope you get some answers soon.

what are his other symptoms? What meds is he on for the reflux? is he on formula?

mad4myboys, I think you should ask to speak to the consultant I really do. Do you see a specialist paed? Have they given you any idea of what the problem could be?

When you do get to speak to someone properly you should ask them for an action plan should he become in great pain again. It really is unacceptable for a child this young to be in agony, especially for a whole bloody week.

I hope you get some help soon.

(reason I ask is that gaviscon really hurt dd's tummy, really made her scream. I have no idea why but it did. We had to take her off it. However, I would check any med changes with your paed).

he was on gavison and yes it did that too him! He has severe reflux which was proven on barium xray. Basically he has chronic wind, Always seems to have tummy ache, struggles to sleep (wakes up in pain etc) and also since he was born very 'bunged' up sounding? He would stop breathing alot but thankfully not as bad but does have sleep apnea which my ds1 and dh have too. His nose is always bogyfied (sorry cant think of right word) and breathes very loudly and snores. The snorting noise he makes makes him cry as i think it may hurt his nostrils? Saw an ent guy ages ago who gave steroid nose drops to reduce the lining of the nasal passages for a month and said should see improvement after few days. Didnt work but as we were due to go into hosp for the first time didnt go back to him (esp as was private) His poos have always been dark and hard

He is on neocate formula and has been for nearly 4 weeks after being tried on various others. He is dairy intolerant (ds1 has food allergies etc aswell)

erm i may have missed something out but dont think so

yes thought he sounded a bit allergy like!

Which reflux meds is he on now?

omeperazole and domperidone. domperidone helps but dont think omeperazole is.....

mad4myboys - Your DS sounds a lot like mine, he has got CF but the dr's were all really shocked when he was diagnosed. There is more chance of your ds not having it, and ALL BABIES IN THE UK ARE TESTED FOR CF i campaigned a lot for it personally so yes they do get tested but im not sure exactly when they brought it in.
About your ds's stools, CF children usually have greasy/bulky stools rather than mucusy tbh the stmptoms of a lactose allergy are also very similar to cf, my ds was on a lactose diet from a few months after he was born as they were sure thats what it was.
Obviously push for what your gut feeling is, ask for a sweat test it will tell you one way or another if its cf, it it were its is so much better to be treated earlier on in life, the things they can do for cf kids are amazing these days but the likleyhood is that it is not cf.

Either way stand strong and demand if need be that your DS is seen and dealt with promptly, somtimes you really have to be hard with the dr's to get your point heard, but you are his mother and you know him best.
Good Luck i really hope you get your ds sorted soon.

Hi there - I just wanted to post here as in reading your post mad4, it seems like you are describing MY ds!! He has had a chronic cough since Christmas which they are putting down to bronchialitis - if I had a cough for that long it would be taken more seriously so why not a baby. He has always been very unsettled since birth, with bad reflux, and was put on Nutramigen formula and Gaviscon. Because he is gaining weight, no-one seems to give a shit - he keeps getting bad tummy bugs, projectile vomiting etc. He is being seen in outpatients clinic in June, but I just feel like they dismiss what is wrong with him- clearly something. Like you, because he seems happy in himself and is a good weight, they seem happy to leave him to get on with it, but his cough is showing no signs of shifting and he has a constant wheeze and rattle.
Having said all that, I had a bad intolerance to cow's milk when I was a child, and was always bunged up and snotty, had sticky diarrhoea, bugs and eczema so that is a consideration. Maybe for you as well Mad4?

Also if you look on the CF Trust website www.cftrust.org.uk it gives you lots of information about the condition, and also tells you that the test for this is now included in the heel prick test at birth. If you are in any doubt, perhaps ask your health visitor for clarification of what was tested for in the heel prick. It's done so early, I bet there are a lot of parents who can't remember!

thanks. overnight he he is now refusing milk. rang hosp and no help so rang HV who did see him awful friday and told her he not taking milk and she is going to talk to gp to try to make him do something and i have a telephone appt after lunch with him.

Its true what you say, it it were us as adults with a voice no it wouldnt go on. Just because a baby cant tell you where and when it hurts they are dismissed unless they arent 'thriving'. Had all this with ds1 when i was told i was a nurotic first time mum. Took for ds1 to projectile across the registra to say oh yes he clearly isnt well.

Getting more angry as i speak/think about it

Have you tried him with half strength milk or plain water? When my ds was ill I was told to try to get him to have few sips every two hours. He was refusing too but just managed to get the first mouthful in. If he does get dehydrated and point blank refuses any fluids by mouth then they will HAVE to admit him to hosp and put a line in to get him hydrated. I know it's the last thing you want, but at least then you might have a chance at getting them to take you seriously.