Reflux in older children

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Permalink Reply by Francesca on August 29, 2008 at 16:19

Hi Helen
my sister's litle girl (now 5) still suffers with it. If you want, i can maybe ask her if she minds me giving you her email address and you can write to her. she doesn't partake in these forum discussions. no time!
xx

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Permalink Reply by Helen on August 31, 2008 at 8:28

Hi Francesca,

Thanks for your reply, that would be great to email your sister. My health visitor put me in touch with a mum with a refluxer when our son's were 6 wks old, we spent many hours walking our screaming babies around the streets together! Her baby got better at 11 months old which naturally I was pleased & jealous about at the same time. I wonder if your sister has had to accept this is how it's going to be for her daughter now? Anyway, let me know what she thinks, I understand if she is too busy.
Helen

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Permalink Reply by cheekymama on August 31, 2008 at 16:17

Sorry 2 but in as my child is only 8 weeks old but my Dr has just prescribed domperidone for my daughter and she is lactose intolerant!!! I did notice she was fractious after having this but she's also just had injections so put it down to this...feel so guilty. Can't believe this! I'm going to have to get savvy reading the ingredients in EVERYTHING i just thought the Dr would know...obviously not :( I really sympathise with you as i'm finding life hard after only 8 weeks, can't imagine how life must be for you. Take care x

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Permalink Reply by Helen on August 31, 2008 at 17:13

What is this connection with lactose & reflux? My son's Paed says its coincidence but I am not so sure. Reflux is a SYMPTOM of a problem, surely? I should be a pro at this now after 3 1/2 yrs but I am still learning and still making mistakes. We went on holiday a couple of weeks ago and we forgot to elevate our son's bed - he was SO ill, sickness, choking, gagging, usual stuff, and it still took us TWO nights to realise what we'd done!!! How old is your son? What tests has he had? I wonder if there is an end to this....?

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Permalink Reply by Helen on August 31, 2008 at 17:09

I don't want to critisise the Dr's if I can help it but one thing I have learnt is that they are only human and will make mistakes. Our job as parents is to ask as many questions and don't be frightened to challenge what they say. Your daughter is lactose intolerant and will therefore be able to tolerate some lactose so Domperidone may be okay for her, my son has no lactase enzyme at all (endoscopy discovered this) and therefore he cannot even have a trace. Calpol also contains lactose but the amount is so small it is not put on the ingredients. For most lactose intolerant children this is not a problem. Lactose is put in so much food I have become more knowledgable than my son's dietician! How did you discover your daughter was lactose intolerant?

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Permalink Reply by sharon on August 31, 2008 at 20:31

Hi Helen i feel for you as my daughter is only 18mths old and i have had enough already, she was 14mths when they tried to take her off her meds to do a ph study and the slack sods said she isn't allergic to milk so at the same time they trialed her with milk i have never seen a baby go down so quickly, she was that bad they thought she had a bug and moved her into her own room but suprise suprise when they put her back on meds and milk free diet lo and behold the bug had gone, amazing. Sorry for the sarcasm but they really are a bit slack, i don't trust any of the nhs peads, they only listen to what they want to hear, i am due to see one soon and you should see the info i am harmed with. Zoe as quite a few problems but don't know what yet, she has these seizure episodes, and also circulation problems, wether it is associated i don't know, but all hell brakes loose at night it as always been bad at night and i don't know why. Zoe is also on omeprazole 20mg and 5mg of domperidone 3 times daily and gaviscon and nutramigen. The dietician is obsessed with trying to give Zoe soya which i tried her with yoghurts a few weeks ago and she started pooing more and more nappies each day they were getting worse and smellier and frothy and then on the fourth day she actually vomited acid up so it was playing on her reflux and when i told the dietician this she said it could be a bug!!!!wtf are all nhs people obsessed with bugs, well lo and behold i cut out the soya and you guessed it... but the dietician did have her uses she got the results of a blood test which showed she wasn't allergic to milk????? but yet she reacts to it so wether she is intolerant to it as it doesn't show up on allergy test, but her total ige was very high that is the antibodies circulating around her body to do with allergies, normal range is 0.5-29.0 Zoes was 291.0. So i phoned the consultant as i think they hadn't noticed this so i pointed it out to him and he is now going to test her for allergies doing blood tests, skin prick tests and also food challenges. I think it is all linked though as i have been looking at allergies and it can cause seizures and also circulatory problems and i have it all written down, i have tried to get her filmed having a seizure but by the time the camera is rolling it has finished as they only last up to a minuite but i know it is a seizure as to how she reacts after, no response, floppy in arms, looking vacant when respond then going straight back to sleep she is due to have eeg as well even though they tried that before and she just pulled them all off so didn't end up doing it, so i don't know what is going to be different this time???? Sorry for babbling but i have a nice time of it like we all have, as your son ever been tested for other allergies? or as he had any other tests ie ph study or the barium meal, endoscopy he also may have food intolerance as that can't be tested for but they can do food challenges. Sharon x

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Permalink Reply by Helen on August 31, 2008 at 21:35

Hi Sharon, Why are all these stories so similar? There is a massive problem out there. I am sorry to hear about your daughter, life must be very stressful for you.
Yeah, my son has had 2 bariums, an endoscopy & a PH test. It was the endoscopy (and biopsy) that showed up a deficient lactase enzyme - it was no suprise to me and in fact I was relieved that I would finally be taken seriously. I knew he was not 'normal' the first night he was born. He had had loads of blood & stools tests prior to this but not much had shown apart from a "slight lactose intolerance" - terrible really as he is now damaged internally not just from reflux but from having lactose when his body had no way of breaking it down.
There are 2 issues with milk - either cows milk protein or lactose can either cause problems for our children, however soya can also be an allergen too! Its trial and error and gut feeling. The main thing for you is Sharon is to ask as many questions as you can, challenge as much as you can and don't walk out of the Paed's room until you are happy! This whole parenting thing has turned me into a person I don't always like but ultimately I have to do EVERYTHING I can to help my child. All the best. x

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Permalink Reply by Tricia on August 31, 2008 at 22:20

Helen

Do you mind me asking why your son has not been operated on to tighten the sphincter valve to stop him refluxing? I thought this was done in severe cases. My son is nearly 9 months old and he has thrown up every day since he was born. He is slightly better on thicker solids but liquids just reflux back up. We are on neocate milk, domperidone, ranitidine and omeprazole and are currently waiting for a 24 hour study and some allergy tests. Our Paed has indicated that he doesn't think our son will grow out of the reflux like others do once they are upright, this really concerns me and I worry for his future. He loves his food, is gaining good weight but it is no fun for him to continously throw up day after day. I am coping but some days it gets to me more than others. Your story interests me as there are not many older children that I have read about that are still suffering.

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Permalink Reply by Francesca on August 31, 2008 at 22:52

Helen
my sister said feel free to email her
her email is valentina72@btinternet.com
she may take a while to answer as she has two little girls
feel free to ask her all Qs
isabella was on zantac and is now not on it - so there is hope! she is now almost 6 tho...
xxxx

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Permalink Reply by Helen on September 1, 2008 at 14:58

Thanks Francesca!

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Permalink Reply by sharon on September 1, 2008 at 20:12

Thanks Helen. Good luck for your son also. Sharon x

Tricia they don't always operate unless the baby or child is aspirating acid, fluid into the lungs. They try to find the cause which is normally an allergy or intolerance, if they haven't grown out of it. My daughter is 18mths and showing no sign of letting up yet. Good luck. Sharon x

Permalink Reply by Ginny S on August 26, 2009 at 20:06

Hi Helen and Sharon

I posted a long message to both of you here today and it seems to have disappeared. I am gutted! In a rush now, but I think both of you should consult Dr Shah at Great Ormond Street or Viveka, part of St. John's and Elizabeth's Hospital in St. John's Wood, London. I also posted to someone who asked about Dr Shah here today and to the question about a 4 year old. I have a 3 and a half year old with multiple food allergies, who is absolutely fine on a restricted diet (he is dairy, wheat, gluten and soya free), but my 22 month old little girl has had all sorts of problems, reflux (still on omeprazole and ranitidine) but also multiple food allergies. Both my children have something called eosinophilic conditions. Stella , 22 months, has made massive progress since seeing Dr Shah. I was at the end of my tether as she was on a restricted diet but still would not eat, on 2nd percentile, etc etc. She did not eat at all until 9 months old, then she gagged or vomited every time she ate for three months, then she had an endoscopy and ph study.
showed awful blistering in her system. She was negative with blood tests to allergy. something wrong with my computer. bother

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