Confused! Weaning problems and reactions...
Hi all
The twins are now 6mths old and we have been trying to wean them since before christmas but have had to stop several times due to Ché showing possible reactions. Leo is taking really well to it all and is a normal baby since being on Neocate. He was suffering with reflux but his main problems was colitis and all that has cleared up now.
Each time we've tried weaning, Ché has become very upset, unsettled, back to his usual inconsolable screaming, night wakings, reflux, mucous nappies etc. Each time we've stopped, he's returned to being pretty happy within a few days. This time, we stopped for 10days and by day 3-4 he was happy, smiling, reflux/pain free and a totally normal baby. He was still waking at night but less often and wasn't screaming in pain. After 10 days, we started giving him Neocate Spoon. He's been having this, plus his Neocate milk and double dose of Omeprazole (went from 10mg to 20mg) since Tuesday and almost as soon as we started this he's been upset and unsettled again. My partner said on Tuesday that as soon as I gave him something he started up again. But I told her there was nothing in Neocate Spoon that could cause a reaction and I put it down to teething. Yes, he's been teething this week but there is a difference in the teething episodes and the inconsolable screaming episodes (he doesn't ram his fists in his mouth or do the other teething things when he's screaming). Am I wrong about the Neocate Spoon? Can it upset some babies? A reaction or just a digestive problems maybe??! Why would he suddenly start going downhill again? The only other thing is that I gave him 2 doses of Calpol yesterday...one in the morning and again in the afternoon. Things have been worse overnight but it doesn't explain the upset before the Calpol.
Last night he was waking up screaming, frantically rubbing his face, eyes and nose. Seemed to be really irritated. He was also having tummy pains and groaning, fidgeting and restless in pain, wouldn't settle. This happens several times last night and at 5am he did a massive explosive nappy that was full of mucous and all up his back. I thought that would be it and that whatever has upset him would be out of his system. He went back to sleep at 5:30am but an hour later he was rubbing his face in his sleep and was really irritated again. He was in and out of sleep getting agitated and in the end he was wide awake and upset so we brought him down. He's been out of sorts all morning and after fighting to get him to sleep (he was tired but wouldn't settle) he woke up with red, puffy eyes, dry scaly skin between his eyebrows and a small rash on the side of his face. Now that tells me there's a reaction to something but all he's had is Neocate milk and Neocate Spoon. So could the Calpol be responsible for this?
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Replies to This Discussion
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Permalink Reply by Emma Louise Evans on -
Forgot to add that his referral to the gastric paed has been prioritised so he is seeing him on Monday. Any advice on what to say/ask?
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Permalink Reply by Beverley on -
Emma - a quick response but it's absolutely possible to react to Spoon and to calpol. Spoon has other ingredients in it aside from Neocate. I haven't dared try it because I fear it would doomed. If you've gir a very sensitive baby calpol is lethal stuff full of colourings, flavourings and preservatives. His reactions sound very similar to Douglas who has EGID. This, and other sorts of allergic reactions can be found by doing scopes and I'd suggest that's where a good gastro would go next. Once you know what's going off there might be other meds that might help or it might just be that he'll have a very limited diet for a period like my LO. If you want to ask more please do but I need to go now. Just wanted to let you know about spoon and calpol. If you need paracetomol, disperse quarter of a 500mg tablet in water and syringe it. It's unscientific and not something medical professionals are keen to suggest but it works. Just be extra careful of overdosing because you can't be 100% sure exactly how much active ingredient they're getting. Hope that helps. X
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Permalink Reply by kylie davidson on -
Rylee doesn't get on with food colouring in calpol so it could be that
Rylee us also restless since starting solids like your boys night wakings not sleeping in the day
Hope you get some answers on Monday
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Permalink Reply by Emma Louise Evans on
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Thank you for replying girls. Beverley, I think Ché needs some kind of investigation coz without black and white facts I find it very difficult to trust my judgements. I hold no hope that anything will be done yet as our general paediatrician told us that Ché is not a priority as he's not losing weight, regardless of how much pain I tell them he's in. She told the gastric paed that the referral was non urgent so we had an appt for 3mths time but today she organised an urgent appt for Monday instead (due to us kicking up a fuss). I'm very anxious about it because the medics have always treated us as though we're just not coping with twins. The paed even had the cheek to ask if I'm suffering from PND (which I'm not...I am suffering from exhaustion and anxiety over the fight we've had to put up to get the help the babies need). I've asked for a ph study because I'm finding it very difficult to tell whats going on half the time but they said they won't do this as he's gaining weight. He has silent reflux so there's a lot of speculating about his screaming episodes...we're always trying to guess if it's teething, reflux, tiredness or behavioural...even when we're sure it's reflux we still doubt ourselves coz we can't actually see what's happening. I just want to know what's going on inside him so I can deal with it better. If it's behavioural I would treat it differently to reflux....so if we're comforting him when it's behavioural rather than reflux we're actually making the issues worse and need to knock it on the head now. But if it's reflux most of the time I don't want to leave him in pain to suffer! My paed can't understand this though and doesn't support the idea of a ph study...and has told the gastric paed this. Now that he seems to be reacting to foods it makes it even more difficult as its still not black and white and there's a lot that can be misread or misinterpreted. It's so difficult and I wish the facts were in front of me so I can judge the situation better. I'm so sick of fighting people who think I'm just not coping with twins. I want to demand investigations but they treat me like I want to put my son thru unnecessary procedures when I actually want to help him! The whole thing is affecting us all and now that Leo is better he's being caused upset by his brothers almost constant screaming.
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Permalink Reply by Verity on -
Finley has reacted to calpol when he was 16 weeks and his whole body swelled up and he had red rashes. I haven't gave him any since and we haven't had a reaction where he has swelled up. Neocate spoon contains corn flour which could be a possibility why he would be reacting to it, it does contain other ingredients too but I would think corn flour would be the most likely to cause a reaction.
So It could be either of them two, has he had calpol before when he wasn't on neocate spoon? Weaning really is a mine field with sensitive babies x
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Permalink Reply by Beverley on
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Emma - I really feel for you. There's nothing more awful than being made to feel like a neurotic mother and not being able to get Che the help he needs. All I can tell you is that the symptoms and patterns of behaviour you're describing are exactly the symptoms Douglas had when weaning but we already had a diagnosis at that time do it was easier to trust my judgement. I still found it difficult at times. To be honest I think people make too much of teething and behaviour etc It sounds to me like a very clear picture and a good gastro should be able to see that. Forgetting all the more ambiguous symptoms such as night waking (even though in our experience night waking is 100% related to Douglas' health issues) mucous in poo is not normal. It's a sign of an inflamed colon and his colon will almost certainly be inflamed because of reactions to food. A PH study may be useful but what would probably be more useful would be scopes - endoscopy and colonoscopy - to look at the inflammation and determine it's causes. I'm not saying he has EGID but it certainly should be considered by your gastro. It can be hard to get a diagnosis though unless you've got a good gastro. I would read up about it before your apointment and ask the gastro if he thinks it's a possibility and worth investigating. There's no wonder you new at your wits end. It's bad enough with one never kind with twins and I can totally see that they'd be even more quick to go down the PND route because you have twins. Clearly you don't and you are a completely sane and worried mum. Try not to doubt yourself. Che shouldn't have to be in pain and weight gain is nothing to do with it. My boy is on the 98th centile for height and weight but food causes him pain. Hope this gastro is good. It sounds like you really need a break. Glad that Leo is doing well. That must be a small weight off your mind. X
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Permalink Reply by Beverley on
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Just reading posts on Reflux Room on Facebook and a lot of people saying how much better impedance studies are than PH studies. If they do decide to do something impedance might be better. Apparently better for looking at all symptoms. Know Sarah H has had them with Lizzie. X
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Permalink Reply by Emma Louise Evans on
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Hi Beverley
I read your reply last night but couldn't respond as my mobile is not playing ball!! I tried to look for the Reflux Room on FB but couldn't find it....is that the full name of the group?
I couldn't find much info on the differences between a ph and impedence study so I'll see if Catherine Walker or Sarah H can help. Catherine's son had one of them.
I totally agree with you on the mucous issue. Leo used to have a lot before he went onto Neocate and now he has no mucous at all....he had colitis which has cleared up so it goes to show that the mucous was a result of gut/bowel inflammation. Ché had some mucous but not as clear as Leo's (when on cows milk and nut 1). He too was fine on just Neocate and now he's getting quite a bit of it.
We have continued to give the Neocate Spoon and although we had another bad night last night he is more settled and happier today. So, maybe it is the Calpol...or maybe even a bit of both. He got a lot of Neocate Spoon over his face yesterday and I cleaned it off with just water....but today he's come out in a bumpy rash all over his one cheek. I'm not sure if this is a coincidence or not but we're now unsure if we should continue with the Spoon and see what happens over the next few days or go for another complete break then start it again and see how he reacts then?!? Leo has been having some Neocate Spoon too (just the odd spoonfull when Ché has it) and he's starting his grunting again and is more grizzly than he's been in a while. I am very aware that I could be reading too much into it with him but it's so difficult not to notice what's going on when we're looking for answers for Ché. I don't want to overreact and be oversensitive to their behaviours/symptoms...but I'm looking at how Leo's reacting to the Neocate Spoon as a comparison as he didn't have any Calpol. So, what would be your advice for the moment? Stop the Neocate Spoon for a few days then reintroduce it or continue with it and see what happens before bringing in anything new?
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Permalink Reply by Sarah on -
Impedance are certainly superior to the pH studies. The principle is the same and so a 24 or 48 period of measuring the reflux to give further information. A pH study does exactly what is says on the box IFSWIM and generally the baby has to come off meds for a period beforehand so I don't personally feel it adds much to the diagnosis (we know they reflux acid and we give them medicine to counteract it). If you do it OFF meds, how can you tell whether or not the meds are sufficient!!?!
Impedance on the other hand actually measures pressure so evaluates exactly how often and for how long the baby is refluxing. It's combined with a pH probe so you get the acid measure as well. It can be done fully on meds. I refuse to take my baby off medication for any investigation. We learned from Lizzie's probe that her acid was controlled but that she was refluxing bile from her small intestine, that she was refluxing pretty much continuously and that it merited further investigation.
She's just had OGD scopes (again fully on meds) which show clearly that her duodenum is inflamed which explains the bile reflux we saw through impedance. So it shows how useful the impedance is I think! (She has already been diagnosed with EC. We're awaiting biopsy results but her consultant thinks also EGE)
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Permalink Reply by Emma Louise Evans on
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Sorry, I was also meant to ask you for a little background about Douglas and how they came to a diagnosis of EGID before he was weaned. It's not coz I think Ché has it or anything....I'm just curious and interested to know what happened with him.
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Permalink Reply by Beverley on
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Emma - you can read our early story on Baby Reflux - Life on the Reflux Rollercoaster. His EGID diagnosis was based on biopsies taken around 6 months. They were done because (as I keep saying on here) he got worse on Neocate so they wanted to see what was going off. When they scoped him he had an ulcerated colon and eosinophils. I
The eosinophils shouldn't be there and are indicative of an inappropriate immune response. Douglas settled completely on Neocate but then it all comes back with food. X
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