We have written our thoughts/questions/concerns/symptoms ready for our next meeting with the gastroenterologist on Thursday.
Got to make the most of every minute in there if the wait between each appointment is going to be six weeks!!
~
Thoughts / questions / concerns / symptoms – to discuss with gastroenterologist – Thursday 10 April 2014
Weaning:
It’s been a bit ‘hit and miss’ – I’ve not done it every day…
- Toby pushes his tongue forward, which makes it difficult to get food in. Is this normal at this stage?
- He still gags/coughs/chokes quite a bit, even with very small amounts of pureed food on the spoon. Is this normal?
- He doesn’t voluntarily open his mouth when I introduce the spoon and offer food. I have to brush his bottom lip in the same way I would were I using a teat for bottle feeding. Is this normal?
Neck strength / sitting etc.:
- He is ‘getting there’ with neck strength but head still heavily drops forward and back if not supported.
He is just over six months (just over four months corrected age). Is this normal?
- Because of this I can’t yet sit him in a conventional high chair or Bumbo seat for feeding.
He is still in a bouncer chair for feeds. Is this okay?
Neurological:
- If we should be concerned about his neck strength for his age and not reaching a developmental milestone, when do we start investigating neurological causes?
Flat head:
- He has flat head on his right side. This has been a ‘preferred side’. We are using a sleep positioner in his crib and positioning his bouncer so that he faces out in to the room the right way to correct this. Should/could we be doing more?
Breathing:
- His heart is doing well and I have been assured is not responsible for any feeding/breathing difficulties.
- However, Toby still recesses under his rib cage when breathing. The consultant at a recent routine post-op check-up told me that because he doesn’t also do this at the base of his throat that this is muscular. This suggests he is breathing using his abdominal muscles. Is that correct? Is this normal / okay?
- He often has a respiratory rate above 60.
- His breathing is still often loud / grunty (occasionally wheezy but mainly grunty)
- He is perpetually congested (rattly/loose sounding chest – though it appears to be upper respiratory, as his chest has always remained clear to date) and has been since birth. Is this okay?
- He has an ongoing but intermittent cough and sneezes quite regularly. Is this a significant indicator of anything going on?
Vomiting:
- Since our last meeting and since Toby’s 24-hour pH probe test the frequency of his large, forceful vomits increased. At least once a day and up to three times. Sometimes it would happen during a feed, sometimes immediately after and sometimes an hour after – not much rhyme or reason to it, though probably most usually soon after a feed.
We concentrated his feeds to reduce volume intake per feed (in consultation with the dietician), which didn’t help greatly.
We have had a feeding pump since last Thursday 3 April. It seems that 120ml/hour period of time is well tolerated.
- He has also often needed help with passing stools, only pooing once every 24 hours and often straining but needing me to draw his legs back and wipe over his bottom to help him. (Though this does seem to have improved over the last few days).
Can we investigate stomach emptying issues?
Twitching/startling
- On about 3 separate occasions I have been with Toby whilst he was awake in his bouncer chair and he has startled himself and cried – but repeatedly and in a row, i.e. startle – cry – startle – cry – startle – cry over and over again. I would simply hold his arms and draw close so as to prevent it happening and to reassure him and settle him down.
There were no loud noises or ‘surprise’ goings on in his environment.
This doesn’t seem normal to me. I know the Moro Reflex is usual when a baby is asleep or falling asleep, as well as when something alarms them – but I’ve never heard of / seen it like this before.
Can you give an explanation?
- Toby sometimes has quite frantic episodes when awake – really jerky kicking movements and arms flailing. He seems fine with it – perhaps he is just exercising and exploring what he is able to do – but it just looks a bit ‘wild’ / erratic! Is it normal at his corrected age of just over four months or should we be seeing smoother movements by now? (He does have good control of his hands when investigating them and fixates on them as one would expect at this age).
SMA:
I know that Toby appears to be such a happy and healthy baby and he is certainly not a ‘floppy baby’ at this stage. But on the back of having recently had a friend’s baby diagnosed with SMA I was alerted to some of the symptoms:
- The obvious one is feeding difficulties:
we still don’t know for sure exactly why Toby’s feeding went downhill. Yes, it could be a feeding aversion off the back of the previously undiagnosed cow’s milk protein hypersensitivity, which was apparently causing him so much pain/discomfort.
However, the video fluoroscopy was frustratingly inconclusive, some aspiration was detected (albeit a minute amount) and the speech and language therapist heard a rather uncoordinated suck/swallow pattern when Toby fed.
- Another is the strength of his neck (bringing me back to whether we should be worried that he’s not yet quite reached this milestone at four months)
- Another is clenched fists and sweaty palms (this is not by any means all the time but I have most certainly noted rather wet hands inside clenched fists on many occasions). Are they simply sweaty because/when they’re clenched?!
- Another is Toby’s breathing difficulties, which still manifest despite his heart (VSD) not being responsible. The recessing under Toby’s rib cage suggests the typical abdominal breathing that happens with SMA. Is Toby’s torso slightly on the bell-shaped side?
- The frog-leg position… Toby is by no means weak. He has quite a lot of strength in his legs; he kicks about and is happy trying to put weight on his legs etc. However, his default ‘resting’ position is that sort of frog-leg position. Is this normal?
- The fact that he has flat head and so clearly had/has a ‘favourite side’, albeit we are trying to remedy this.
Is it worth testing for SMA or can you happily and easily convince me that this could not be at play? I want to be convinced and to put it out of my mind!
Operations (two separate inguinal hernia repairs)
- Scar tissue – could it be in any way responsible for any pain / blockage (consultant at hospital where Toby was operated on seems to think not)
- Could the fact that Toby’s left inguinal hernia got so large have caused any complications when things were tucked back in place?
- Could intubation, failing extubation, further re-intubation overnight and suction equipment for secretions in Toby’s mouth etc. have caused any damage to his windpipe – making breathing a strain at times?
Toby’s vocals are raspy and not yet ‘clear’ – sometimes sounding ‘barky’ or ‘growly’(!) He laughs but not in a ‘proper’ way, if that makes sense – it’s still more of a dry sounding chuckle. Could it have affected his voice box?
Could it indeed have played in to his feeding aversion (i.e. negative oral associations beyond simply feeding itself)? – his feeding did take a significant dip after both operations.
Oesophagus (Endoscopy…Oesophogitis…)
- Your last notes said that, depending on the results of reflux, we would do an endoscopy and look for oesophagitis. I’m aware that the pH probe test came back detecting only very mild reflux at 1.3%. Is an endoscopy therefore definitely not necessary? What about looking at his stomach and intestinal tissue?
Cow’s milk protein hypersensitivity
- Do we know for sure that Toby has this?
I appreciate that the Nutramigen AA does not seem to give Toby any complaints and, yes, Toby’s feeding did go downhill whilst he was on cow’s milk based formula. Therefore, we believe the cow’s milk protein hypersensitivity was a correct diagnosis.
However, when Toby started on Nutramigen AA coincided with when the NG tube went in and, therefore, when Toby was finally receiving the correct amount of milk.
Is there a possibility that Toby could simply have been very hungry a lot of the time (when he was unable to feed / fearful of feeding) and therefore became fussy and distressed?
Can we test for the cow’s milk protein hypersensitivity – just to be sure of its correct diagnosis? (It would make weaning in the long-run easier, in terms of giving us more options if it were not the case. On that note, if it is correct, can I mix soya milk in to his food?)
Video fluoroscopy:
- Can we test again for an unsafe swallow / aspiration to get some more conclusive evidence?
Toby will not suck at the teat (although we know his suck is fine – very good in fact – based upon how he sucks on his soother and also at a finger) and he was not interested in cup feeding – but for the sake of a test could I not orally syringe feed him enough milk at a time to investigate his swallow again? Would that method of feeding work/be adequate for our purposes?
NG tube – tube dependency – feeding therapy:
- My understanding from our last appointment is that you do not want us to go ‘backwards’ and try to reintroduce Toby to bottle feeding.
As much as I appreciate the approach you are taking here – in terms of focussing on moving forward with positive feeding experiences, hopefully as a result of a positive weaning experience – equally I would love to think that Toby could be without the tube and taking milk for himself again if this is within his reach.
I respect your professional opinion and medical knowledge and experience but feel I need to more fully understand the necessity for the tube in an ongoing sense. - Is it possible that we could wean Toby off the NG tube at some point? What kind of feeding therapy is available to us if we were able to take this route? Could Toby ‘overcome’ any possible feeding aversion he has and get back to the bottles again?
florencejoy 