Your thoughts please folks...
Hi
Just wanting to pick brains please.
Joe is 9 1/2 months and has suffered since a couple of weeks old with reflux. We worked our way through gaviscon, ranitidine with little improvement. The GP has been excellent (I know I'm lucky) guiding us all the way and explaining everything. He then tried him on the liquid omeprazole which massively helped within a few days. We had to up the dose regularly it seemed to coincide with weight gain. He gradually got to max dose (5ml twice daily) was stable for a while but when he had breakthrough symptoms GP added ranitidine in too which really helped. He was on 3 x 1ml daily as well as the omeprazole for quite a while but the reflux has been getting worse not better. We saw GP again earlier this month and he recalculated according to his weight (which remarkably despite all the problems, throwing up etc has been excellent from Day 1 75-91 centile). We increased to 4 x 1ml each day with no improvement and a week later to 2ml 3 x daily. I'm sure this is helping but the nights are getting worse. He's always been a poor sleeper (very) day and night. Some improvement on tummy and more upright but in reality now sleeps better sat up (even considered bringing car seat into bedroom last 2 nights!!) He seems in discomfort, bucking and screaming, sounds like a grunting pig when feeding. He signs for milk in the night constantly but I don't think he's hungry it's like the sucking helps. He seems to just feed constantly (sometimes biting and now with 4 teeth it's awful!) He actually seems almost manic at times whilst feeding hitting and punching his own head or me scratching my side, grabbing skin on my boob etc
I feel so sleep deprived from feeding him on and off all night. We mostly co sleep or he is sometimes in cot (side off side cared to side of bed)
He's teething like I say seems to constantly have running nose.
He had terrible diarrhoea (5-10 nappies daily) and we presumed from meds but I tried dairy elimination as I was EBF and I heard they could be CMPI, the diarrhoea stopped from Day 1 to 'normal' nappies. Need some formula for back up as often he throws up BM straight after and meds, also as I'm working sometimes. Realised not LI cos was horrendous on SMA LF. Big fat fail with introducing Nutramigen AA even mixed with expressed. Cos ok with soya products in weaning diet now in Infasoy which think he's ok with.
Nowhere to go now with meds. Reflux not good, v whingey a lot even in day. Wondering if another food is a prob eg gluten (me and DD coeliac) or soy??!!
Increased sickness but appears to be random eg couple of huge voms then ok for couple of days. So not 'I'll'. As I've found myself carrying towels, wipes etc in car seems very reminiscent of DD when undisgnosed coeliac.
Keeping a food and symptom diary.
Sorry for long post but just wanted to put you in picture and see if you have any ideas where to go from here? Back to GP? (who is managing reflux and CMPI) saw Paed at hosp once quite useless really. She was happy for GP to manage. Feeling quite down about it. If he lasts more than 1.5/2 hours sleeping at night it's a miracle! He's so tired you can see it but something wakes him and he CANNOT ever settle himself back down.
Any ideas much appreciated
Vicki :-D
Just wanting to pick brains please.
Joe is 9 1/2 months and has suffered since a couple of weeks old with reflux. We worked our way through gaviscon, ranitidine with little improvement. The GP has been excellent (I know I'm lucky) guiding us all the way and explaining everything. He then tried him on the liquid omeprazole which massively helped within a few days. We had to up the dose regularly it seemed to coincide with weight gain. He gradually got to max dose (5ml twice daily) was stable for a while but when he had breakthrough symptoms GP added ranitidine in too which really helped. He was on 3 x 1ml daily as well as the omeprazole for quite a while but the reflux has been getting worse not better. We saw GP again earlier this month and he recalculated according to his weight (which remarkably despite all the problems, throwing up etc has been excellent from Day 1 75-91 centile). We increased to 4 x 1ml each day with no improvement and a week later to 2ml 3 x daily. I'm sure this is helping but the nights are getting worse. He's always been a poor sleeper (very) day and night. Some improvement on tummy and more upright but in reality now sleeps better sat up (even considered bringing car seat into bedroom last 2 nights!!) He seems in discomfort, bucking and screaming, sounds like a grunting pig when feeding. He signs for milk in the night constantly but I don't think he's hungry it's like the sucking helps. He seems to just feed constantly (sometimes biting and now with 4 teeth it's awful!) He actually seems almost manic at times whilst feeding hitting and punching his own head or me scratching my side, grabbing skin on my boob etc
I feel so sleep deprived from feeding him on and off all night. We mostly co sleep or he is sometimes in cot (side off side cared to side of bed)
He's teething like I say seems to constantly have running nose.
He had terrible diarrhoea (5-10 nappies daily) and we presumed from meds but I tried dairy elimination as I was EBF and I heard they could be CMPI, the diarrhoea stopped from Day 1 to 'normal' nappies. Need some formula for back up as often he throws up BM straight after and meds, also as I'm working sometimes. Realised not LI cos was horrendous on SMA LF. Big fat fail with introducing Nutramigen AA even mixed with expressed. Cos ok with soya products in weaning diet now in Infasoy which think he's ok with.
Nowhere to go now with meds. Reflux not good, v whingey a lot even in day. Wondering if another food is a prob eg gluten (me and DD coeliac) or soy??!!
Increased sickness but appears to be random eg couple of huge voms then ok for couple of days. So not 'I'll'. As I've found myself carrying towels, wipes etc in car seems very reminiscent of DD when undisgnosed coeliac.
Keeping a food and symptom diary.
Sorry for long post but just wanted to put you in picture and see if you have any ideas where to go from here? Back to GP? (who is managing reflux and CMPI) saw Paed at hosp once quite useless really. She was happy for GP to manage. Feeling quite down about it. If he lasts more than 1.5/2 hours sleeping at night it's a miracle! He's so tired you can see it but something wakes him and he CANNOT ever settle himself back down.
Any ideas much appreciated
Vicki :-D
Views: 61
Replies to This Discussion
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Permalink Reply by Jenny Rawling on -
Hi Vicki - woudl be suspicious of an intolerance and if you've ruled out soya then wheat and eggs are the next suspects. Sounds like there is a strong family history of issues with wheat/gluten so I'd suspect that next. Presumably you are gluten free anyway so it would just be a question of cutting it out for Joe. I guess you are already quite up to speed with alternatives if you have been through this already, but is it worth asking the GP to refer you to a dietician? Jen x
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Permalink Reply by Jenny B on -
Apart from the throwing up (my LO is a silent refluxer) my baby sounds just like mine!!i don't have any advice as I'm in a quandary with mine, but would like to know the advice you're being told :)
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Permalink Reply by Vicki Gilbert on
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Thanks ladies. Yes Jenny GF cos coeliac. Have made a docs app for tom aft going to insist on a referral to gastro Paed and dietician just losing the will to live over it all. After another bedtime last night of 3 HUGE voms and little man with 2 baths and 2 showers I need some help with this (especially with DH saying helpful stuff like 'talking about it isn't going to change it' cheers grrrrr men) yes think soya and gluten 2 main suspects and how crazy but I find myself hoping it's gluten as them all with diff allergies and me being GF DF and SF may cause me to lose the will to live! I have the added complication of an above knee amputation and the weight loss has already affected the fitting of the prosthesis etc If it's soya I'm stuffed cos no formula then (I'm back to work) as the Nutramigen AA was a big fat fail :( sorry for moaning but so fed up. Yes Jenny B hope these lovely ladies can give advice sorry you're going through it too x
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Permalink Reply by Jenny Rawling on
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Bless you Vicki - I don't know how some of you ladies manage all the challenges life throws at you! I would think a strong family history of gluten intolerance and the fact you think he's ok with soya means the gluten is more likely - then at least you are all the same. Good luck tomorrow. Jen x
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Sadly no choice I guess! Thanks. Saw GP and he was on agreement re referral discussed best options decided private to get seen (in theory) faster. Then he said he'll refer me back to NHS (the won't biopsy tiny children at spire for corkiacs anyway) ut drawn a blank seems only suitable gastro Paed in Leeds consulting privately does so once a month. March clinic full so not til April 11th :(
Another night of puking in the bed again last another 7 weeks of this may just send me over the edge! Any ideas? Pah. Heads gonna explode :(
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Permalink Reply by Beverley on -
Hi Vicki,
Just got round to reading this having read your other post about Gastro recommendations. My LO is mfpi and what you describe is very similar to what I remember from when he was breastfed so I would say it's very likely it is a food intolerance issue.
With the Nut AA did you try going very slowly? My LO refused Neocate until I mixed it 5.5 parts EBM to 0.5 parts Neocate and gradually altered the ratio over a 2 week period. He got stuck at 5 parts Neocate to one part EBM and at that point I went cold turkey and eventually he took it and never looked back. I know it's easy for me to say but, especially given your circumstances, I would do everything in your power to get him on the milk now while he's still relatively young.
Good luck.
X
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Thanks Bev.
Not needing to give up the BF and it's definately best for him and easiest to 'process' and push through his system. Needing the formula for when at work and occasionally when not there. Hence why I think introducing Nutramigen was unsuccessful. Despite like you say ratios etc sure he would if it was all the time.
May have to think about giving up if soya is the next culprit as already no dairy and gluten in my diet I am disappearing! We'll cross that bridge...
Going to ring re that Manchester guy today
V x
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Permalink Reply by Beverley on
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Ah, I see.
P
If you find you're cutting too much out of your diet, it's really worth a go. My LO went from screaming 15 times a night to sleeping through once settled on Neocate. X
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Thanks B :)
Got app with Mr Fragbemi at Manchester next thurs
V x
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Thanks B :)
Got app with Mr Fragbemi at Manchester next thurs
V x
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