Wriggles gets near enough 100% of her nutrition and calories from formula; always has done. With a very slight window of exception, most of her life this has been formula carefully considered by paediatricians and medical professionals and one picked to carefully meet specific needs. We have been through a fair few in our time, found some we liked (as much as you can like commercially produced milk derived 'food') and some we really didn't. Picking a good formula was important with the tube. In some ways, it opened things up as dietitians will readily admit some taste vile so there is little help of children taking them and having a tube eliminates taste as an issue. In some ways though it highlights how important getting it right it. There is so little room for error with children, especially those in fragile health. We have been having a year-long dalliance with high calorie formula to meet Wriggles' weight needs and after having worked through much of the Paediasure range, seem to have it right.
Recently though, I have been reading about blended diet which is much as it says on the tin. Real food, blended to go down the tube. Mostly, I am pretty at peace with Wriggles having formula albeit through a tube sticking out of her tummy-needs must and all that. She grows on formula. She develops on formula. She digests formula. A large part of me is apprehensive to rock the boat. Why change what works? I haven't yet spoken with a dietitian about it, but I suspect they will say the same. Formula comes with statistics. Formula has studies about it. Medical reports, numbers, averages, facts. Formula is easily measured, it is tailored down to the last 0.1ml. It has a neat little box on the label telling you all the information. I just have two little niggles that I want to at least experiment with or really look into:
1. Although medication seems to largely control Wriggles' reflux, it is far from going away and lying dormant for long, and when we do have flare ups they wreak absolute havoc. There are no formal studies about blended diet and reflux, but huge numbers of parent (and increasingly health professional) anecdotes are testimony to the fact that switching to a blended diet instead of formula can really improve on, if not eliminate the worst of reflux. This won't be true for all children and all diagnoses, but it is something I am very curious about. When we are in a good period, things are ok. When we are in a bad period, there is all manner of projectile vomiting, crying, coughing, gagging and there are still fears about aspirating on reflux. A very good reason for wanting it controlled a little more than it is now. I'd say it is about 70% controlled now. Not bad at all, but 30% is still too much for me especially when it involves dragging the respiratory system into review again and frankly, why would any child be motivated to eat when they are being sick?
2. That eating thing. Sometimes I feel it can be all I go on about, but really it is SUCH a big thing. So far, Wriggles shows no motivation for scoffing. None. What if, even partially, feeding her actual food down the tube stimulated something somewhere into encouraging her body to at least try? I'm not talking whole meals, just curiosity, tastes, most importantly a want to eat for herself. Not because I'm trying to bribe her by letting her holding my keys in exchange for licking a spoon but a desire to satiate the tastes, the smells, the textures. A number of parents have reported very favourable turn around in their children's attitudes to food since trying the blended diet. I know at one point, we will have to look at tube weaning. I have spent hours reading up on this to the wee small hours and am so torn by procedures and philosophies on it. Little of it sits entirely comfortably with me, yet. So what if something helped her there by her own accord first? Sometimes I think, well we've nothing to loose. If it doesn't work, it doesn't work. But you don't know without trying.
Really, blended diet should seem the most natural thing in the world. Humans are made to eat food by whatever means, yes? But the opposition towards blended diet is surprising. Few professionals recommend it, fewer support it. Our community nurse recently remarked another patient she sees has tried it; she did say that it was brilliant for reflux but that the parents did it out on a limb without positive backing. Pages could be written for or against. Feeding is such an emotive issue, from a personal, parental or professional point of view. Nutrition is the essentially the building blocks of life for a healthy future, simply put it must be gotten right. But it is also so easy to medicalise and forget the pleasure it brings to the giver and receiver.
So I have been experimenting. Just a bit. Nothing radical.
I feel so naughty.
I keep expecting a dietitian or doctor to pop up screaming "PUT THAT SYRINGE DOOOOOWN!".
I knew I had become a bit institutionalised by our hospital history but was slightly taken aback.
I have my defence ready. "It's just a bit of porridge, guv." No. "For chrissakes it's just food." "She's my child!!!" "If she ate this with her mouth, you and I would be dancing a jig on the ceiling!" I think I might have over-thought this.
So far, I have only experimented with swapping one daytime bolus feed. I have kept the same calories and as near to the same volume. I haven't tried anything I wouldn't give her orally or any complex flavours. I just want to see how she responds to digesting anything but milk and the odd Quaver. We've only been doing it a week and I'm so far sitting on the fence as to if we carry this on or if we might be some of the lucky ones to reap results. But one thing, I can't begin to tell you the joy, the excitement of mixing porridge, of smelling real fruit, of looking at flavour, colours and smells. It excites me, putting it down the tube. It really makes me happy that it is real.
It makes me hope that one day I will be making these concoctions not just for a tube and syringe. Maybe I need to get out more, maybe I need to stop looking so far ahead, maybe I need to stop caring about food...but for now, I'm just enjoying feeding my daughter a little more.
Showing posts with label milk. Show all posts
Showing posts with label milk. Show all posts
Monday, January 14
Thursday, June 14
Warning: Contains Sick
I am sick of all the sick.
I have scrubbed my carpets better than Cinderella ever could and I can still smell it.
On my fingers, washed a thousand times.
On our clothes, washed again and again and aired in sweet fresh air.
In Wriggles' soft baby hair, washed as many times as she'll let me.
The sickly smell of regurgitated vanilla peptide-milk has seeped into my consciousness and is following me about.
At work or with friends I become paranoid others smell it too.
Every time in public that Wriggles' hiccups, I tense. Is another fountain coming?
Did I pack enough spare clothes?
Have I got a muslin or tea towel?
If not, why an earth not? Stupid mama.
How pissed off is this swanky art gallery going to be? (Actually didn't bat an eyelid.)
Slightly, Wriggles is too over-friendly with the rounds of viruses. Mostly, she has a very sensitive gag reflex and still at 21 months is plagued by reflux.I am pretty sure the gag reflex is strongly linked with reflux, which has besieged her since term.
During the first year of your baby's life, the muscular valve
gradually gets stronger and better at keeping food down, so his chance
of having reflux decreases. About half of babies will get some reflux
during their first three months, but it’s only a real problem for a
small percentage of these. By 10 months only about five per cent of
babies have reflux," from Babycentre.
Oh dear. Once again, we sent to have fallen into the small pond of percentages making us ever so slightly different from those all-hallowed baby books. Wriggles has always had the vomiting variation of reflux. Projectile vomiting at that. She can easily aim halfway across a room. One of my strongest memories from her 'newborn' period was when she was term plus a few weeks, one friend who was visiting came in and sat on the end of my bed. She was still wearing her coat. She opened her mouth the speak and bleeeeeeeeeeeugh-Wriggles managed to get her dinner in the coat pocket. We can laugh about it now. To her credit, my friend could laugh about it then, once she had gotten over the first few seconds of being stunned. She even (sort of) continued laughing when she had to wear her coat into work the next morning.
It took a long time to get a GP or HV to take me seriously about the reflux. It even took a while to persuade the neonatal consultant we were under. In fact, it took over seven months and changing doctors surgeries to get anyone to listen, and then it clicked with the consultants. The difficulty feeding, the recurrent chest infections, the coughing... Possibly because she was vomiting large quantities several times a day, and as a result of the irritation was producing large amounts of mucous, which really wasn't helping her already impaired scarred lungs.
The first port of call for most babies trying medication to control reflux, is commonly an antacid such as Infant Gaviscon. They reduce the acidity, so even if they do not decrease to occurance of reflux, they should reduce the pain and discomfort. Infant Gaviscon helps to thicken the stomach contents making it harder to force their way up. Side effects include constipation, which Wriggles already had and was made worse. Gaviscon did not suit her at all, so off we trundled back to our New Favourite Ever GP. Infant Gaviscon does suit a lot of babies though, and for many will control the symptoms. It can be used if you are breastfeeding also, if added to a small amount of water in a bottle.
The second medications we tried were an H2 Blocker (or H2RAs) and prokinetic agents in tandem with each other. These were both weight sensitive so needed reviewing regularly, but finally began to do the trick. Week by week, although the reflux was not eliminated, it was lessened. We were able to go from about 60-70% of feeds coming back up to maybe once or twice a day. It was still far from this posseting I have read about, but my washing machine could at least draw breath!
H2 Blockers, such as ranitidine, act in a similar way to antacids. They reduce production of stomach acid so what comes up should be less and hurt less.
Prokinetic agents, such as domperidone, are used to treat nausea and vomiting in adults. It also helps the stomach contents to move more quickly into the intestines. Prokinetic agents help formula fed babies most and those on solids, and breastmilk is digested quicker anyway.
If none of these make a significant difference, there are PPIs or proton pump inhibitors which we eventually ended up trying when the oral aversion and still-ongoing vomiting was affected her weight and intake of solids (ie. none) and milk, which was unreliable. Omeprazole or lansoprazole are often prescribed and can be in a liquid form which has a very short shelf life and is hideously expensive, or more commonly MUPS-a water-dissoluble tablet. The plus side of MUPS is that the strong medicinal flavour and odour is removed: the downside is that as in many soluble medication, it is never 100% and so you can be there stirring the solution until your arms ache like billy-oh to ensure a correct dosage. It is also easier in tube-fed children to use liquid, although certainly not impossible to use the tablets.
If reflux is ongoing, it could be worth checking that it is reflux and not a Cows Milk Protein allergy, as symptoms can be similar. If you are formula feeding, you can request to try either a lactose free-formula, soya formula or hypoallergenic formula such as Neocate or Nutramigen. If your baby is on solids; try cutting out dairy products making sure to replace them with appropriate foods for a balanced meal plan. Parents should be able to request a meeting with a paediatric dietician if their HV cannot give them full information needed. There is an ever increasing market of dairy and lactose-free items; it just takes that extra five minutes of label reading in supermarkets or some ingenious recipe scouring of which the internet is a goldmine. Soya intolerance or allergy is also not uncommon in babies, so it could be worth considering this. If you are breastfeeding, try cutting things out from your diet to see if it makes a difference and keep a food diary. It will take a few weeks to work, to get all the proteins out of the body's system so if you or your doctor suspect this, you may have to be patient and give it a while. Working with our paediatrician and sanity-saving-dietician, I tried Wriggles on a dairy free diet for three months. It made a very slight difference to her stools, but not to the vomiting, chestiness, feeding ambivalence and her weight gain plateaued then wavered. With the blessing and encouragement of our dietician, Lovely Ruth, we gave this up and switched to a high calorie peptide milk with lansoprazole which we have been on for the last seven months.
And all was well. Most of the time.
The vomiting and chestiness reduced, and with a sigh of relief, we began to think we had seen the back of the big, bad Reflux. The main problem we were left with, was a very sensitive gag palate. Sometimes, all it takes is for something to touch Wriggles' lips and she can be sick. Now she is older, I do think a small amount of this is psychological behaviour, but for the most part, she goes eagerly to complete a feed or try something and it is heartbreaking then to see her enjoyment and hard work come back up all over the pair of us. Watching her retch over and over until there is nothing but bile and mucous is really unpleasant-emotionally as well as physically! My poor bairn. Teething and bugs always make it far worse, and I suspect this current resurgence we are in the middle of is fighting off a plethora of bugs that she is meeting in the temporary nursery she is at for the last week. Roll on the end of June!
Other things you can try include using a wedge or creating a slope for your child to sleep on (think several Argos catalogues and Yellow Pages), frequent winding and little and often feeds. Also buying really nice smelling soap to make bath times more relaxing to give that dreadful sick-y smell a good seeing off-the same applies for investing in pot pourri in the living room. And take a look at Living With Reflux: a fabulous charity dedicated to supporting those people through the difficult time when you appear to have morphed from mother to Mrs Tiggywinkle and is full of supportive similarly-frazzled parents with tips for understandably-frustrated babies and to just soothe your nerves as your HV shrugs it all off. Again. But keep trying with doctors if you believe it really is affecting your child; arm yourself with information and don't give up. You know your child best and know what goes on everyday. Babies need a spokesperson and you need a night's sleep!
"Reflux is what happens when your baby's stomach contents come back up
into his food pipe (gullet or oesophagus) or even into his mouth. The
long name for reflux is gastro-oesophageal reflux disease.
Babies get reflux because the muscular valve at the end of the food
pipe, which acts to keep food in the tummy, hasn’t developed properly
yet. This means that when your baby’s tummy is full, food and acid can
come back up. This can cause him to bring up small amounts of milk
(possetting) or even vomit.
Oh dear. Once again, we sent to have fallen into the small pond of percentages making us ever so slightly different from those all-hallowed baby books. Wriggles has always had the vomiting variation of reflux. Projectile vomiting at that. She can easily aim halfway across a room. One of my strongest memories from her 'newborn' period was when she was term plus a few weeks, one friend who was visiting came in and sat on the end of my bed. She was still wearing her coat. She opened her mouth the speak and bleeeeeeeeeeeugh-Wriggles managed to get her dinner in the coat pocket. We can laugh about it now. To her credit, my friend could laugh about it then, once she had gotten over the first few seconds of being stunned. She even (sort of) continued laughing when she had to wear her coat into work the next morning.
It took a long time to get a GP or HV to take me seriously about the reflux. It even took a while to persuade the neonatal consultant we were under. In fact, it took over seven months and changing doctors surgeries to get anyone to listen, and then it clicked with the consultants. The difficulty feeding, the recurrent chest infections, the coughing... Possibly because she was vomiting large quantities several times a day, and as a result of the irritation was producing large amounts of mucous, which really wasn't helping her already impaired scarred lungs.
The first port of call for most babies trying medication to control reflux, is commonly an antacid such as Infant Gaviscon. They reduce the acidity, so even if they do not decrease to occurance of reflux, they should reduce the pain and discomfort. Infant Gaviscon helps to thicken the stomach contents making it harder to force their way up. Side effects include constipation, which Wriggles already had and was made worse. Gaviscon did not suit her at all, so off we trundled back to our New Favourite Ever GP. Infant Gaviscon does suit a lot of babies though, and for many will control the symptoms. It can be used if you are breastfeeding also, if added to a small amount of water in a bottle.
The second medications we tried were an H2 Blocker (or H2RAs) and prokinetic agents in tandem with each other. These were both weight sensitive so needed reviewing regularly, but finally began to do the trick. Week by week, although the reflux was not eliminated, it was lessened. We were able to go from about 60-70% of feeds coming back up to maybe once or twice a day. It was still far from this posseting I have read about, but my washing machine could at least draw breath!
H2 Blockers, such as ranitidine, act in a similar way to antacids. They reduce production of stomach acid so what comes up should be less and hurt less.
Prokinetic agents, such as domperidone, are used to treat nausea and vomiting in adults. It also helps the stomach contents to move more quickly into the intestines. Prokinetic agents help formula fed babies most and those on solids, and breastmilk is digested quicker anyway.
If none of these make a significant difference, there are PPIs or proton pump inhibitors which we eventually ended up trying when the oral aversion and still-ongoing vomiting was affected her weight and intake of solids (ie. none) and milk, which was unreliable. Omeprazole or lansoprazole are often prescribed and can be in a liquid form which has a very short shelf life and is hideously expensive, or more commonly MUPS-a water-dissoluble tablet. The plus side of MUPS is that the strong medicinal flavour and odour is removed: the downside is that as in many soluble medication, it is never 100% and so you can be there stirring the solution until your arms ache like billy-oh to ensure a correct dosage. It is also easier in tube-fed children to use liquid, although certainly not impossible to use the tablets.
If reflux is ongoing, it could be worth checking that it is reflux and not a Cows Milk Protein allergy, as symptoms can be similar. If you are formula feeding, you can request to try either a lactose free-formula, soya formula or hypoallergenic formula such as Neocate or Nutramigen. If your baby is on solids; try cutting out dairy products making sure to replace them with appropriate foods for a balanced meal plan. Parents should be able to request a meeting with a paediatric dietician if their HV cannot give them full information needed. There is an ever increasing market of dairy and lactose-free items; it just takes that extra five minutes of label reading in supermarkets or some ingenious recipe scouring of which the internet is a goldmine. Soya intolerance or allergy is also not uncommon in babies, so it could be worth considering this. If you are breastfeeding, try cutting things out from your diet to see if it makes a difference and keep a food diary. It will take a few weeks to work, to get all the proteins out of the body's system so if you or your doctor suspect this, you may have to be patient and give it a while. Working with our paediatrician and sanity-saving-dietician, I tried Wriggles on a dairy free diet for three months. It made a very slight difference to her stools, but not to the vomiting, chestiness, feeding ambivalence and her weight gain plateaued then wavered. With the blessing and encouragement of our dietician, Lovely Ruth, we gave this up and switched to a high calorie peptide milk with lansoprazole which we have been on for the last seven months.
And all was well. Most of the time.
The vomiting and chestiness reduced, and with a sigh of relief, we began to think we had seen the back of the big, bad Reflux. The main problem we were left with, was a very sensitive gag palate. Sometimes, all it takes is for something to touch Wriggles' lips and she can be sick. Now she is older, I do think a small amount of this is psychological behaviour, but for the most part, she goes eagerly to complete a feed or try something and it is heartbreaking then to see her enjoyment and hard work come back up all over the pair of us. Watching her retch over and over until there is nothing but bile and mucous is really unpleasant-emotionally as well as physically! My poor bairn. Teething and bugs always make it far worse, and I suspect this current resurgence we are in the middle of is fighting off a plethora of bugs that she is meeting in the temporary nursery she is at for the last week. Roll on the end of June!
Other things you can try include using a wedge or creating a slope for your child to sleep on (think several Argos catalogues and Yellow Pages), frequent winding and little and often feeds. Also buying really nice smelling soap to make bath times more relaxing to give that dreadful sick-y smell a good seeing off-the same applies for investing in pot pourri in the living room. And take a look at Living With Reflux: a fabulous charity dedicated to supporting those people through the difficult time when you appear to have morphed from mother to Mrs Tiggywinkle and is full of supportive similarly-frazzled parents with tips for understandably-frustrated babies and to just soothe your nerves as your HV shrugs it all off. Again. But keep trying with doctors if you believe it really is affecting your child; arm yourself with information and don't give up. You know your child best and know what goes on everyday. Babies need a spokesperson and you need a night's sleep!
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