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?

poor you. these hospitals and docs are so bloody annoying.

Is he breastfeeding or formula fed?

i have a wonderful book called 'Digestive wellness for Children' by elizabeth lipski.

Its excellent and she suggests you take it along to your gp/paed.
firstly i would suggest cutting out dairy, this is often a problem for reflux babies, (this is if you are breastfeeding, I don't know about bottle feeding but maybe hypoallergic formulas are worht a try.) My doc refused to prescribe this for my ds cos he wasn't ill enough! Even though he projectile vomited all formula and wouldn't eat solids. he was clearly allergic to milk but they don't like to because its expensive)

Anyway in this book lengthy discussion of illnesses including cystic fibrosis. main symptoms are salty tasting skin, lots of mucous - like sweat, snot, respiratory problems failure to gain weight. doesn't say anything about green sticky poo though

She suggests probiotics - I use bifidabacterium infantis. its a powder from good health food shops, you can mix it with formula or water or take it yourself if you are breastfeeding.

i really recommend this book for you, has it covers all issues realting to the gut. as a mother you become very sensitive to your babies needs/moods/problems. there may be a problem but it is probably much less serious than you think. I constantly think my child has autism, but i have found that using this book i understand which foods cause certain problems for him.
HTH and good luck with the doctor.

Also i really recommend cranio sacral therapy for your lo. my lo had chronic constipation and it was eased by this treament. its very good for correcting problems of the intentines.

BTW western medecine is only the fourth most widely used medical practice in the world after, 1. homeopathic and indian holistic appraoch - mind body yoga etc 2. chinese medicine, acupuncture etc.

1. ayurvedic - eating the right foods and healing plants
2. western medecine.

so those docs are not the be all and end all and if you don't agree with what they saw it doesn't make you wrong.

I have to say I totally agree with kalo - I studied beauty therapy when I was younger, and even there they taught us about holistic treatments and remedies, something that the medical profession are very dismissive of. I myself have had fantastic results from acupuncture(maybe not for a baby though), reflexology, massage, osteopathy and herbalism. My DS has had cranial osteopathy which was great as well as baby massage which really calmed him.
It might be a catch 22 - your lo is feeling crappy so he is tense, and that is making the problem worse - very common in digestive problems.
I also think kalo is right in saying that the problem probably isn't as bad as you think.
Let us know how you are getting on, thinking of you x

thanks all for your support i really appreciate it. as i said before he is on neocate formula as dairy intollerant. Hes had 3 naps bomore than30 mins each. he whimpers and crys in his sleep. is obv very sleepy. now wont take any milk but having abit of prune juice. he hasnt had a temp either

hes just fallen asleep againg having the prune juice. so if he WAS tested for CF at birth with heel prick test, can he not develop it over the first few months as apposed to be born with it? i saw gp 3 times last week as he is making odd wheeze noise when breathing and they said could hear it but couldnt locate any infection. hes had that since birth but significantly worse during the last 7 days. they said is viral

HV said she doesnt think ds2 wouldve been tested for CF here so waiting for MW to ring back to double check

Have you got a "red book", or a child health record book? I got the heel prick test result posted to me and I stuck it in the back of the book - it says on it CF not suspected, so my DS has been tested-he is 9 mo. Even if they have been tested, it is not conclusive, but I really don't think that is what is the matter with your lo. Please try not to worry yourself. Have you discussed your CF fears with the doctors? I'm sure that if they had any suspicions at all themselves, they would test for that.
Perhaps just ask them point blank for a sweat test - surely that would be possible - doesn't sound too expensive or invasive for your lo.
At least then it would put your mind at ease one way or another?

yes do have one, MW hasnt rung back...hands and feet still blue thinkinh of taking him to out of hours gp when dh home

Hi...hope you've taken him to out of hours as blue hands and feet doesn't sound very nice. Hope you get to the bottom of it somehow...let us know how you get on tonight.

mad4myboys, as CF is a genetic disorder it is something that you are born with(and so cannot 'develop' over time)although the heel prick test sometimes gives a false negative result.

Please remember that whilst CF is the most common inherited genetic disorder in this country, it is still extremely rare. Statistics provided by the CF Trust say that roughly only 250 babies are born with it in the entire country each year

Your ds does sound like he is going through a rough time though and I would definitely push to get him tested if you feel in any way unsure. You might find it worthwhile contacting the CF trust to find out the nearest specialist CF centre to you so that you can contact them directly. Sometimes local hospitals can be loathe to carry out the test

thanks i appreciate that info.

i didnt take him to out of hours last night as he slept frpm 6.30-10.30pm!!! didint want to wake him. he had milk then woke unsettled at 3am with belly really gurgling etc.

he has had diarhorrea (sp) today. can someone tell me what 'greasy' poo looks like?? going to see how he goes today

A friend of mine has a child with CF. She suspected it early on as he was passing what basically looked like neat vegetable oil into his nappies.

She asked for the sweat test. It tests for the amount of salt in the sweat.

so is it yellow liquid then? He filled his nappy at tea time and the smell is so vile (not normal smell) it was also full of mucous as i have told the paed

ARe his hands & feet still blue? If so I'd got to A&E and take the yucky nappy with you.

It could be possible that he has a tummy bug on top of severe reflux but he is clearly unwell and sadly I think you are just going to have to push and push and push to get them to check everything out more thoroughly.

I was going to randomly suggest celiacs (spelling?) the gluton allergy did you say you'd started weaning him?

i am weaning him but keeping him off wheat for first year as that is what dietician told me to do with ds1 who has food allergies aswell. Hands and feet were fine this morning but again this afternoon were blue but were also cold?

ARe his lips okay? Blue lips get you to the top of the A&E waiting list!

I just wondered if having something like celiacs could have that sort of affect even though not eating gluton - sure it isn't anything he's eaten in disguise?

I think your next appt is too far away to leave it and I would be the over concerned mother and go up there. Preferably when he is having a 4 hours screaming in pain session.

I spent 5 months being told dd just had a touch of colic when yes it was silent reflux........

ARe his lips okay? Blue lips get you to the top of the A&E waiting list!

I just wondered if having something like celiacs could have that sort of affect even though not eating gluton - sure it isn't anything he's eaten in disguise?

I think your next appt is too far away to leave it and I would be the over concerned mother and go up there. Preferably when he is having a 4 hours screaming in pain session.

I spent 5 months being told dd just had a touch of colic when yes it was silent reflux........

no his lips are ok. The OTHER thing, this teatime i noticed he had a ridge on his head, as in a dip? But i think it was too far back for the fontanal? He had a good tea then noticed it and after his bath it had disappeared.

crickey just read they have 2 soft spots.... may have been that

oh but thhe bit on the top closes at 6 weeks. taking him to cranial 2morrow so will ask her i think

Hi if he has a dip on his head I think that might mean he is a little bit dehydrated - if he has diarrhoea then he probably is. Yellow mucousy nappies are just normal diarrhoea - my ds had a two week long tummy bug the other week, and I have heard there is a bad one going around. My guess is that your DS has got this on top of his other problems. I was advised to give him half formula, half dioralyte to rehydrate him. I would ring up nhs direct and tell them all - I know they are pretty useless sometimes, but they don't know your history, so will have an objective view. They will tell you whether to take to hosp, doc, etc.
How is he this morning?