Dont know where to turn.

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Permalink Reply by Jenny Rawling on February 22, 2012 at 13:05

Hi Verity - no advice really, just sending you a (((HUG))). Are you still seeing an allergist in March as well? I think you are making positive steps for Finley with an appointment to see Dr Shah, and you'll just have to stick to Neocate and your "safe foods" until then. Other than that, if he's bad at the moment is there any scope to increase his meds?

Can you talk to the GP about some help for you in the meantime? Have you discussed any treatments for depression with them, whether that's practical help, counselling/CBT or antiDs?

It's a hard road to walk being a reflux-Mummy, you need to take care of yourself as well as Finley. Jen xx

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Permalink Reply by Jenny B on February 22, 2012 at 13:27

I don't have advice, but wanted to send you a virtual hug too! I've felt on the slippery depression road this week, and just so clueless and overwhelmed and tired etc.
I would follow jen's advice and stick to the safe foods for now. My eldest son isn't a refluxer but is very small for his age and would always refuse food when teething and it used to worry me sick, but we just fed him what we could and kept up his fluids and he would eat again. 
If you're seeing a specialist soon, just try and hold on you're doing a fantastic job!

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Permalink Reply by Anita Stewart on February 22, 2012 at 14:10

Big hugs to you.

Like the others no real advice albeit to say that Jack will go through periods of not eating and bad diarrohea but it seems to pass......everything picks up again.............then we go through it again. We never change his diet always stick with what we know he can safely eat, it just seems to happen. The longest period of this was about 2 / 3 weeks, we have had the past few days where he hasn't really eaten anything or taken any bottle. I think the main thing is to keep up the fluid intake of water if you can.

I get through these periods by just telling myself that when either of my other 2 boys are unwell they tend to stop eating and the doctor has always informed me that we can all live without food for a while but not water.

Keep perservering and make sure you look after yourself. Remember your child is a refluxer so don't be surprised when it shows its head again.....

Really sorry I cant be of any more help xxxxx

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Permalink Reply by Verity on February 22, 2012 at 14:44

Thank you all for your virtual hugs and kind messages. Jen he is on 20mg do don't think he can go any higher? I am on anti d's and have one on one cbt and also go to a group. I'm ok most of the time but then when something happens with Finley I go down hill with worry and fear. It seems that gps etc aren't bothered about why he is reacting to so much, they seem to think I should simply accept he has reacted to 23 foods end of, no questions asked! When I can't help but worry there is something more happening, especially inside his tummy. 

I don't even know what his safe foods are as he seems to be reacting more and more. He is living on chicken, beef, carrot, potato, prunes and blueberries. He has been having rice but I'm not sure if that's now a problem. My brain has turned to mush!  He is also drinking only about 15 oz at a real push, I was thinking of maybe asking the doctors to do blood tests to check is iron levels etc? As he is getting worn out easier and just doesn't look himself, he becomes very clumbsy and unbalanced when he has a day where he has a mucous nappy? Does that add up to anyone?

Thanks again,

V x

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Permalink Reply by Laura Perks on February 22, 2012 at 14:49

I'm so sorry to read this Verity. I totally get the feeling that when people, even professionals, dont understand what's going on they just go into denial. And it just isloates us as Mums. I feel very much the same, when Florence has good days I'm on a high - back to my old self, then she goes awfully bad for no reason and I crash, massively.

It's a cruel illness and deserves more attention. Our children deserve to be pain free and us Mums listened to. I'm horrified at what I've seen / heard since being a member of this forum. So many families in such a bad place because of this.

So, nothing to add, but I am in little doubt I'll be right there with you if you fast forward a little while. I'm sorry.

 

xxx

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Permalink Reply by Jenny Rawling on February 22, 2012 at 14:51

Think 20mg omep is normally the maximum for babies unless a consultant sanctions more. It's very hard when you are worried about them all the time :(

Fingers crossed you get some progress at your appointments. Jen x

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Permalink Reply by Verity on February 22, 2012 at 18:15

Thanks Laura, hopefully you'll be in a better place than us. I'm in a confused world at the moment.

I took him to the took doctors they checked him over and said there isn't anything alarming about him. I said how he always has either constipation, diarreroa or now more mucous. He said they are all signs that the bowels and guy are irritated. So basically Finley's guts are irritated permently. He said about taking bloods but as he has a hosp appt not at our local hospital the results can't be sent over so there wouldn't be much point. We have still got an allergy appt at a specialist paed allergy clinic on the 13th and then dr shah on the 20tj. Isn't too far away but at the moment feels like a life time. 

Hopefully this time next month we will be in a better position and won't just be sitting around wondering and worrying as much!

Xx

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Permalink Reply by emma penman on February 26, 2012 at 21:49

Big hug verity don't have any real advice but know that to worry as we do is because we are doing our best for our los and being good mummy's! When all else fails and I am totally clueless with gracies safe foods I have to remind myself that I'm doing ok and we will get passed this! I hope!!! You are the only person who has mentioned the energyless and clumsiness?? I thought I was reading too much into it and that it was coincidental but recently it is more and more evident that she keeps falling over and is lethargic and really appears weak?? She will only take 7 oz of neocate at a push a day so 15 is pretty good! Not eating much solids either and she has always looked like a ghost. I do hope u get some practical support when you see shah just hang on in there and know your anxiety = dedicated caring mummy!! Xx

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Permalink Reply by Verity on February 27, 2012 at 18:38

Thank you for your reply earlier. Glad I'm not the only one who loses the plot about safe foods lol! 

I mentioned how he is clumsy and unbalanced when he's having or getting over a reaction to our health visitor and she said it may be down to his limited diet. I wonder if it's just generally that he's feeling unwell and is weak. I know when I feel rubbish I'm often more clumbsy. I am going to mention it to dr shah. Maybe you should mention it to Gracies paed. I saw your recent post about finally being taken seriously! Well done!! 

Xx

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Permalink Reply by emma penman on February 27, 2012 at 20:33

Thanks verity just waiting now for what they said was an urgent referral!!! Ha ha! She is much worse again and don't know what they're waiting for not sure how much weight they're happy to let her loose. Hope Finley is doing ok x

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Permalink Reply by Ginny S on February 22, 2012 at 18:10

I have randomly looked at this site again as someone emailed me from a post about two or three years ago! I saw your post. I have just cut and pasted my reply to someone else from another post. Hang in there or call Lorna, Dr Shah's private secretary and see if you can get advice from someone else in the meantime. Normally these children need to start anti histamines to get better (ketotifen). Don't worry about the range of foods so much. Both my kids are now much better (4 and 6 years old respectively), but my daughter did not eat at all until she was three, and then just gluten free sausages, potatoes and carrots for a year and now we have four rotating meals. The dietitian says she is a model child now!!! My son also only ate lamb chops and carrots for a year. So basically don't panic! Dr Shah will definitely help. no child will introduce any food if they are in pain. Your son will probably need anti inflammatories. 

See this below (I haven't edited it)

Alot of the children with food intolerances will not be 'cured' by food elimination alone. Dr Shah, the top person in this field at Gt Ormond St, thinks that 50% of reflux is not reflux at all but severe food allergy in the gut, undetectable by blood tests as the gut is a different system.  I have a six year old who had extremely bad diahorrea (15 to 20 times a day until he was one, when I started cutting out all the 'bad' foods). Gluten is the killer in my view. You need to eliminate that as well as soy. My children are both fine with eggs. Cooked egg is often alright. My children did not sleep a wink until I removed all the foods. By one you could switch to rice milk (sherriffs fairtrade in waitrose is the nicest, fortified with all the vits). Kids need 400mg of calcium a day. There are two things you can get on prescription - calogen, a fat supplement which goes in the rice milk (10 to 20ml in 500 mls) and Sandoz calcium syrup. Typical symptoms of gut disorders are diahorrea or constipation, irritability, screaming and sleeplessness. 

My son slept through the night three days after I cut out gluten as has never looked back.

My daughter, unfortunately, is much worse and is on a range of medication as well as none of the reactive foods. She was not ok until she was put on the anti histamines. Also inflammation may initially have to be taken down with steroids. Food elimination only is not the answer. You need to get to a good consultant as GPs are hopeless with this as are a lot of consultants. The doctors do not know why the gut is reacting like this - it may be that these  children's guts are so sensitive any food irritates them and so anti histamines are used to control this reaction allowing them to eat. 50% grow out of it between 7 and 10 years of age. 

See below for what I sent someone else. It is quite common, they have seen over 2,000 children at Gt Ormond St with these problems.

This was my previous post:

I really don't believe in reflux at all - as far as we're concerned, reflux is caused by gut disorders in 50% of cases. Dr Shah at Great Ormond ST is the expert and one of the only doctors working in this field. you need to be seeing a consultant in a hospital already to get referred to him on the NHS, but it will take 6 months as his appointments are so backed up. If I was you I would make a private appointment, at Great ORmond St, with him as it cost 200 quid, but it was the best money I ever spent. He then got my children referred to him from Chelsea and Westminster on the NHS. Prior to that I was at Guildford until Stella was one, they did not have a clue.

Stella was also allergic to Neocate. She vomited neocate as well. In fact she seemed even worse on that. We only turned a corner when all reactive foods were removed, she only drank rice milk with a fat supplement called calogen, and she had been put on a course of steroids.

Ketotifen is brilliant and was the turning point for us, along with total elimination of all reactive foods - dairy, wheat, gluten and soy - I would really really avoid gluten as I think it is a killer. Basically, Dr Shah says that a lot of reflux is caused by the gut being inflammed and irritated. Baby is in agony and they cannot eat or drink, especially if you are giving them all the wrong foods. 

My daughter actually didn't get better until they put her on a course of steroids. You have to take the inflammation down first, ketotifen won't necessarily do that. 

Anti histamines are used to stop the allergic responses in the gut. The doctors at Gt Ormond St have discovered this but they don't know why. Secondly, my daughter is also on an anti biotic three times a week through out the winter as it takes down inflammation too. She is also still on all the reflux meds. Ranitidine works as an anti histamine too. 

You really need to go and see a consultant who knows about all the available therapies. They were hopeless even at Chelsea and Westminster which is meant to be good. 

My daughter is now four and tons better but on lots of drugs. But she eats two meals a day, albeit very restrictively, and goes to pre-school which is a total miracle for me. She also has two meals there which she takes with her. She still won't try any new foods and has never eaten lots of things like bread and most fruits. She eats gluten free sausages, duck, chicken, gluten free fish fingers, veg, potatoes, rice and gluten free pasta. No sauces because she vomited for 2,.5 years etc. They have told me to relax about how restrictive she is as what she eats is healthy. Oh, she also eats gluten free biscuits, cakes and crisps. But that's it. Never had breakfast etc!

You may need to reply to my proper email as I don't know how to receive one on this

I would look up Dr Shah on Gt ORmond st but he is climbing Kilimanjaro to raise funds for his research this month. He is taking private appointments for March I think. Lorna is his private secretary and you can get hold of her through an organisation called Viveka in St Johns Wood where he used to do his private patients. 

I am NHS so don't have Lorna's Gt Ormond st numbers

Hope this helps.

Tell all those mums out there about Ketotifen, food allergies and the like. Gut allergies are undetectable by blood test, it is a total difference system. You have to have an endoscopy to confirm inflammation, but they only do this in extreme cases (my daughter has had a few). My son who is nearly six has the disease too but he just had really bad diahorrea (15 to 20 times a day) until I cut out all the foods at 1.5 years. He never vomited like my daughter. It can get worse with every child

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Permalink Reply by Anita Stewart on February 22, 2012 at 19:41

Hi Ginny

I've just seen that at some point you were seen at Guildford, can I ask where you live because we were originally seen in Guildford as we live in Cranleigh. Who were you seen by?

We have Jack on omeprazole, ketetofin, cetirizine, monteleukast and azithroymycin, steriod cream for the eczma and an preventor inhaler in the morning and evening, and the blue inhaler for if he has an attack., oh also Neocate milk with Dairy and soya free diet.

We saw Dr Shah for the first time 5 weeks ago and are seeing him again next Tuesday. We haven't seen much of an improvement in Jack and he was talking about doing endoscopy and colonoscopy which he has Jack provisionally booked in for at the beginning of March. Do you know what this involves and will it be able to give us any more answers? Will it change anything re the medication etc?  Sorry so many questions would really appreciate some help xxxxx

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