Reflux in older children

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Permalink Reply by Belinda on September 28, 2009 at 15:01

Hi there Can i just ask, about the lactose intol test, im getting confused. My daughter was diagnosed with Silent reflux at 5 wks old. After a week her reflux was so server she would stop breathin and turn blue, ending up in hospital on monitors. Shortly after i demanded a lactose test as i beleived there may be an added reason. It was done but turned out negative. At 4 months old she started refusing more milk feeds, so weaning was started early, (duck to water) Things improved very slowly. Long story short.... She is now 14 months old and we have been able to stop the domperidone (not being sick) cut Omperozole down to 10mg, and she still has 1mg Gaviscon advance 3 times a day. She HATES milk now, but will eat milk products like yoghurts, custard ect... The problem we now have is she does not sleep very well at night, only started around 11 months old when we introduced cows milk stuff, she will go down at around 9pm then wakes around 12.30am moaning a whinging, tossing and turning like she is in pain (never in the day), she will eventually fall back to sleep around 2.30am until 7.30am, it is always the same times (so strange). I have noticed that if she has cereal with skimmed milk (the only one she will touch only on cereal) she does the above.... But we have recently been trying if she has toast and no milk at all, she will sleep till 4pm before waking. She will also scream the house down if she eats to much cheese in a day. I am at a loss as to wether the test was wrong, or wether you look for things in relux that may not be there. It can get so confusing. Sorry its such a long post....

Permalink Reply by Helen on September 1, 2008 at 14:57

Hi Tricia,

I don't really know why Sam has not been operated on.... we have had so many false hopes that he would get better. I know the op isn't always successful and not many Gastro Paeds are keen to do it. Sam isn't sick as much as he used to be but it affects him in different ways, now he is older he explains to us about his sore tummy which breaks my heart. He recentely told a Dr he has"horns" in his tummy! This must be his explanation of discomfort. He also gags a lot, and kind of chokes and breathes strangely when he has been running etc. A lot of effort goes into keeping him still and calm!
I am glad your son is gaining weight - is he a happy boy? However it is a constant reminder for you when he throws up - not to mention the clearing up & the washing. Sam now takes himself to the bathroom to be sick AND cleans up after himself! Not really funny but to him it's just what happens. He can control the sickness a lot more now, shame we can't get the pain more managable. I hope you get your appoint for ph study & tests soon. Helen

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Permalink Reply by Tricia on September 1, 2008 at 18:39

Helen Thanks for your response. I feel for you and Sam. Do you mind me asking was Sam sick a lot when he was younger? Nathan doesn't seem to get much pain (at least I think he doesn't) as he rarely cries but just can't keep any liquid (milk, porridge) down. He sleeps well now and isn't sick at night. I am not convinced it is normal reflux and am sure there must be something that aggrevates it (e.g food allergies/intolerances) and I hoping the tests might help on this. He is a very happy boy 95% of the time and the sickness doesn't really bother him - it bothers me more and I get so stressed worrying about how he will be when he is older.

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Permalink Reply by Helen on September 2, 2008 at 7:42

Hi Tricia,
Yes, Sam was very sick as a baby and until he was about 2 1/2. This does not mean that Nathan will be the same so don't worry! He sounds similar to a friends baby who is sick a lot but has no pain. She did not believe the reflux diagnosis either as she had seen how ill (and miserable!) Sam was. However it seems that reflux comes in different forms but I do agree it is likely that Nathan has intolerances.
Try not to worry about the future Tricia as you cannot control what happens, hope you get the tests done very soon.

Permalink Reply by Catherine Hazell on August 25, 2009 at 23:01

Hi saw your post by using the search tool. Desperate to chat to someone with an older child with relux. We have just found out our 4 year old has relux and has probably always had it. He must have silent relux as he is not sick just drinks alot, has food aversions,burps and doesn't sleep. He has not slept for 4 years until they gave him the Gaviscon a few months ago. We had blood tests for diabetes and saw a sleep Dr before they finally realised what was wrong. I was back and forth to the drs every month but they could not see a problem! I am very sad for him that he has had to suffer for so long.
We are having an endoscopy on the 5th of September and a PH test over 24 hours. 3 Days after he starts school! I hope we finally get some help!
How are you getting on?
Catherine x

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Permalink Reply by Helen on August 26, 2009 at 11:08

Hi Catherine,
A long journey hey?
It's been a while since I last wrote anything on this site but my update is that my son is no longer on any reflux medication. This is because he is now seen at Great Ormond Street and is being treated for Eosinophilic Enterocolitis. Turns out, the reflux was just a symptom of this other disease. He is now on a whole new lot of drugs to manage this illness and when he is well, the reflux is okay. He still suffers from time to time but we are busy concentrating on keeping him well!
Reflux is such a complex issue and sadly most health professionals don't know how to handle it properly. My son also had a PH test - this showed severe reflux so they gave him more drugs instead of finding out the biological reasons for relux in the first place.
I get nervous advising people about what they should do but I do feel strongly that as parents we should not sit back and take the Dr's "opinion" as gospel. My son's medical notes show what a mess up his health has been over his 4 yrs. I am interested in your son's symptoms and they are also symptoms of Eosinophilic Disorders. My son drinks all the time - I can't imagine he will ever be out of a nappy at night time! We were told at GOSH that it is a problem with ED children. Our son sleeps so much more soundly these days now and thankfully his food issues have been minimal. He is on a restricted diet which helps and we are so much better supported now we have a diagnosis. He also starts reception in Sept and I am nervous but also grateful to our local Paediatrician who has informed them really well about his condition.
Catherine, I hope you move forward with your son's health -- please remember it is not normal for a 4yr old to suffer in this way and so you must push for answers.
All the best.
Helen

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Permalink Reply by Ginny S on August 26, 2009 at 16:35

Hi Helen and Sharon

Please see my reply to Zoe asking about Dr Shah. Please will you both go and see Dr Shah!!!! It was the best 250 quid I have ever spent. I remember you Sharon from your posts a year ago. Stella is now 22 months old. Anyway, I have just done her history for Zoe on other post. But basically she is allergic to everything. You must not put your child on soy instead of dairy, as most children allergic to dairy are allergic to soya. I did this with Stella for 4 months and it was a disaster. Stella vomited all of the alternative milks. She is finally getting a lot better on the anti allergy meds - ketotifen and nalcrom. They have made a massive difference and I was really really at the end of my tether with it all. My son is allergic to dairy, wheat, gluten and soy as well (he is 3 and a half), but his symptoms were just diahhroea and stomach cramps and initially weight loss. He was absolutely fine after I restricted his diet completely at 15 months. However, my daughter is much more complicated as she had the dreaded reflux too. I think because of antibiotics I had to take when breastfeeding. Now she is on omeprazole, ranitidine, ketotifen and nalcrom (these two anti histamine/anti allergy meds are very mild and can be taken safely on a very long term basis). Both my kids are on a totally restricted diet and they drink rice milk. Did you know nutramigen is not dairy free? YNeocatre is the best but with older children you can try rice milk which isa least allerenci

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Permalink Reply by Ginny S on August 26, 2009 at 16:42

sorry me again, my computer keeps doing something weird.

Dr Shah has private clinics at Great Ormond Street and Viveka in West London, part of St John's and Elizabeth's hospital. He is the top person specialising in reflux and eosinophilic conditions (gut allergies). These gut allergies do not show up in the blood, but food instead reacts in gut and the lymph nodes swell and blister. Stella was negative in all allergy blood tests but her endoscopy at 12 months showed this blistering. Clearly she had not wanted to eat as she was in agony. Reflux is in 50 per cent of cases caused by allergy of some type. I still do not know whether Stella actually has reflux at all. If the gut is enflamed then it refluxes ....

I can look up Dr Shah's number for you, or google Viveka and you will find him.

I went to see everyone, eg Dr Thomson at Great Portland Street as well as sticking with my NHS consultants. I was referred to Chelsea and Westminster a year ago. In my experience Dr Shah seems to know what he is talking about more than anyone else. See previous discussions about him on here.

It is a minefield, how do we understand it all. I think we need an older children's support group!!!

Stella has been eating for 2 months now, it is such a relef although I am worried about her being on so many drugs. I found domperidone awful She was on that for 6 months and much better off it. Since being on just ketotifen she has slept through the night without wailing. She cried all the time on domperidone, I think iut is dreadful!

Also Dr Shah initially put Stella on steroids as she was in such a state. This calmed the gut and she ate for the first time in her life. You may both be in the same postition form the sounds of things.

Ginny

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Permalink Reply by Helen on August 26, 2009 at 17:30

Hi Ginny,

My son is already under Dr Shah - that's how we finally got a diagnosis. He is allergic to cows milk protein and soya. He is also on Ketotifen & Nalcrom to manage his Eosinophilic Disorder.

What a challenge our children are!

Helen

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Permalink Reply by Ginny S on August 26, 2009 at 20:17

sorry I just read some of the rest of your posts, didn't see them the first time, my computer doing something weird! I see you have gone exactly the same route as us. And mine also diagnosed with eosinophilic conditions. Sorry, you must think me mad as have now seen the rest of your posts! Whoops!

Are you getting anywhere now? Stella is much better on the ketotifen and nalcrom, plus omeprazole and ranitidine. However, my next challenge will be to see if I can reduce the reflux meds. How did you do that? I will wait for about another month as Stella only happily eating some fruit and veg very recently. I am trying pro biotics too, though don't know if this will help. One thing at a time. Also she always vomited all the vitamin supplements so I am worried she has had no range of vitamins for about 8 months now. Hey, low down the priorities.

I so agree with you, it is mad the struggle I have gone through and the knowledge I have accumulated on the way. I don't really look at tthis site any more as I got depressed that Stella never got better while everyone else's kids seemed to improve. However, now I wonder why fodd allergies are not the top ppriority for all these doctors. Ridiculous that we have to go to the top of the food chain as it were (!) to get the answers. So many children must be suffering unneccessarily.

Nice to hear from someone else in the same positiion,

Good luck
Ginny x

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Permalink Reply by Catherine Hazell on August 26, 2009 at 20:18

Thank you for your response. I will question Dr Eltumi as to whether Toby may have the same condition. I would hate for things to be missed again. My husband has an auto immune condition, is your sons condition related to the the immune system?
My older son is being seen by GOSH so I know how good they are there.

It's a horrible wait to been seen for the endoscopy but just want some answers.

Glad you are seeing the right people now and you finally got a diagnosis. Good Luck with everything. I will let the group now the results of the tests.
We need a sub group called bigger refluxers. I wouldn't know where to start though. No computer whizz I'm afraid.

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Permalink Reply by Michelle on September 24, 2009 at 14:16

Catherine, I read somewhere on the site that your little boy had a thirst problem, I am intrigued to know how much he drinks? My daughter is 2 this weekend and she drinks (and eats) non stop. Everyone always comments on how much she drinks though, she would be ahppy to have a cup in her hand the whole time. I have nearly been to the doctors a few times about it as I don't think it is normal but then people tell me it is probably just a habit and she likes to suck on a cup - never been convinced myself though. She still wakes for a drink once or twice a night which again could be habit but now you have me thinking! She was on omeprezole until she was 14 months and still doesn't drink cows milk as it gives her tummy aches.

I just wonder if she is still suffering a bit?

Glad you are finally getting some answers. We have been through it twice with my son and daughter but fortunately it hasn't gone on much after 18 months. Number 3 on the way though and not feeling hopeful of symptom free baby!

Thanks
Michelle

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