Son has down syndrome and reflux probs - HELP!!!

[LoulabelleNI]

Hi I'm a first timer at this so apologies if lingo isn't up to speed!

My 22 month old son has down syndrome (DS) with usual speech delay, hearing loss, hernia's, sleep apnoea, prone to chest infections and reflux. Doc's don't seem to care about anything esp reflux. DS was sick up to 12 times a night and had to sleep in chair or pram for months. Finally settled when I reduced milk tried ranitidine now on losec 20mgs but vomiting has flared up again and he is in agony and chocking at night. Phoned comm nurse who passed me to GP who didn't care after fight with GP he put him on losec 20mgs and ranitidine as of tonight. Any advice on things that worked other than med???? Totally at wits end also 5 months preg with baby 2 so nights are sleepless enough and want to get this sorted. Do docs always drag heels with things???? We get no help other than 'special needs' centre twice a week for 2 hours but this is useless - DS has come home soaked through from nappy, clothes dirty and they don't listen to my instructions!!!!! Any advice appreciated. xx

Sorry for ramble!

Sorry I can't help.

Hope someone else will be along soon....

I have not experienced this problem- Are you a member of any support group for children with DS ?- something like that may help you

otherwise I would chase gp and if that is no good I would change

Do you have a paed who could help or HV ?

Hi

Thanks all.

I'm part of a support group but other children are at least a few years older and didn't have the prob to same extent and med's i've already tried worked for them. This really flared up last year DS was sick up to 12 times in 1 night bear in mind he was 9 months and not sleeping very long. I chased and chased before and got no where and to be honest the thought of having to go down the same road again makes me so anxious. No one seems to care. HV says she'll visit in aug - didn't appear until Dec, said she would do community dentist referral and see again in 1 month - still waiting and referral hasn't even been made. I understand that having a child with special needs is hard work but do so called 'healthcare professions' not understand that we have so much more running and chasing to do it would be helpful if they didn't make it 10 times harder and look at you as if you are making things up.

Again sorry for rant but family just don't get it and its really nice to be able to vent.

Ta L x

Sorry not experienced with DS or the probs you describe with the reflux but I think you need to push the GP for a referral here to get this looked at and get a specialist help and management plan here for him. Poor kid, must be horrid for him - and very tough on you too, especially with a pregnancy to add into the tiredness factor. Good luck, hope you get some help.

My son with downs had terrible reflux but no pain. I think this is more than reflux and you need an urgent referral to a paediatric gastroenterologist.

hi, sorry for your problems. my gp is no use to my ds, he always refers me to paed. is there any chance of paed app. if not what about next time he's sick just take him to a&e in hospital, they would have to deal with it, then offer follow up appointment which would hopefully get to bottom of problem. my ds had bad reflux problem when born (he's now 10), different to what your ds has, no-one would listen to me, had him back n forth to gp, told overanxious mother. only after 6 weeks when they discovered he wasnt gaining weight was anything done about it. Would it be possible to keep note of weight and see if he's losing any? i would definetly just go straight to A&E. Hope you get some help and sleep soon. :)

Just phoned community nurse and he was quite confused as med GP prescribed, ranitidine, is commonly used with losec. But did push for referral to gastroenterologist - he is going to speak to paediatrian and get this arranged downside is in NI there is only 1 of these and waiting list is really long surprise surprise but thanks fingers crossed.

shazian - last year he was sick aspirate - reflux and stuff that went into his lungs - phoned ambulance as he was choking and obviously couldn't put him into car seat and drive - when we arrived at a&e was told to join others in waiting room and wait turn - 6 hours later was told can't see anything wrong away you go - the good old NHS. He was 5 weeks premature and weighed 4lbs 10oz now weighs 10kgs - official weight of 1 year so is underweight and has been between 9.6kg and 10kg since July 10 - he gets weight every 2 weeks so there is a record but no one sees a problem as he is in proportion - also been called overanxious mum repeatedly until son was 6 months old and after 2 visits to GP and given all clear twice he was rushed to hospital, sedated and intubated after he wouldn't respond to treatment and transferred to ICU. He was on oxygen and had a tube in so his throat wouldnt close over - 2 docs missed pneumonia, trachitis, bronchitis and para influzena - also ICU doc lied to my face about results being back given him all clear. I have no faith in docs just listen to my own instincts which although I start to doubt them after so many knocks are always right.

My advice to all mums listen to your instincts and don't give up. xx

My ds was sick horrendously for the 1st 12 months of his life. The paed didn't believe us how sick he was until he was sick in her consulting room. Then we urgently got referred to a gastroenterologist paed and it was the beginning of sorting out all his reflux and gastric problems. My ds isn't "fixed" but he's well controlled and gains weight, eats and isn't sick any longer. You really need to push for a specialist referal.