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Oh god hold my hand.(284 Posts)
Am in Asia and about to sleep but neurologist says dd who is in hospital (10 months) has delayed brain development. This is in conjunction with failure to thrive and a flatlining curve. They are looking at metabolic and genetic disorders and I am beside myself. Couldn't find Special Needs on my stupid phone.
Spinal tap tomorrow I think.
So scared. She is my world.
About to see specialist in Germany. Dd has had about 600ml over 3 days. Clamps mouth shut at bottle and spoon.
FIL (dr) says he does not believe in gastrostomy as it disturbs the mother child feeding relationship. Ha. What feeding relationship. Anyway - am staying with PIL so trying to not argue.
Consultation will be in German. I only speak pidgin German.
The weight is falling off dd and London appt not for another week.
Ophelias really sorry to hear that things are no better. I hope your consultation today goes well. It must be so hard. I am thinking of you and your DD.
I hope the specialist has some answers and a treatment that works, Ophelia. Wishing you both well.
Mine too. I have been wondering about how you were getting on over Christmas.
Fingers crossed that something positive happens today.
Well the specialist says nothing wrong with her she just doesn't want to eat.
Never mind the hiccoughs, swallowing, gagging and bottle refusal.
He said to take her to London.
So that's China, Vietnam, Bangkok an Germany. Is there hospital bingo?
He also said to get a feeding therapist. She has a feeding therapist FFS. Therapist says she has silent reflux and to see a specialist.
Anyway am going to see Mike Thomson at the Portland week after next.
And dd has lost weight.
Crying to be honest
Thank you everyone for your thoughts Just ranting.
Bloody hell, Ophelia! I was so hoping you would get some answers! You have been through so much...love and hugs to you both..
Will be hoping for more success next week.
Is just a massive case of each specialist going eek! And pushing us somewhere else. I am going to London and drawing the line in the sand. If I need to get her a gastrostomy, fifteen feeding specialists and a shiny unicorn I will. I just want some fecker to help me put together a PLAN.
Anyway. My Mil has just made us all eat a plate of amuse bouche in front of dd (who also fed herself a little). TBH it's the most helpful anyone has been in a month. And yes, I have a MIL who whips up amuse bouche
Before you spend a small fortune at the Portland, have you thought about sending a summary of all the reports to GOSH and seeing if they will see you under the NHS? It does sound a complex case (I posted on your original reflux thread and have been silently following). I am assuming that you are British and can use the NHS. If you have a lot of money, the private route may be good but I can see this costing many £000s to get to the bottom of it, plus private prescriptions etc etc.
Sometimes for very complex (and interesting to specialists) cases, the NHS can actually do a better job.
Wise words. I absolutely would but I have the first appointment available for the top guy Mike Thomson. He has been recommended by about a thousand people including my insurance company and International SOS.
My insurance company MAY pay for all treatments...
Also my dd is not British. Not sure how that figures in NHS.
Anyhow am just tired now and will go and see Mr Thomson and just ask him what to do. He seems fairly sensible from his emails.
Your suggestion makes loads of sense to be honest. Am just exhausted from chasing people from pillar to post.
The doctors at the Portland are fantastic - we see John Fysh, I think he saved my sanity when my daughter had terrible reflux (aspirated into her lungs at 7 months) and still GP told me I was a neurotic mother. He had us at gosh for tests in 24 hrs and we never looked back. We still see him now when we have 'real' things going on, other than tonsillitis etc... and he is as kind now as he was then, phoned his sectretary from his holiday with a treatment plan when (pesky)daughter was rushed into hospital with an auto immune thing when she was 8, after I had phoned his office in a panic and she told him about my call.
Once we got her reflux medicine sorted - she was a different child -( can be sick into a crisp packet if need be, but so much happier and started to put on weight) Also, have you heard of the NoTube clinic.. For tube fed babies who won't eat once they can and for babies/kids with eating aversion... Was recommended by speech/feeding therapist to a very close friend of mine. Sounds a bit showy but apparently has fantastic results, once medical reasons have been diagnosed/excluded.
Best of luck
Just adding some support. Hope you get some answers from the new guy!
So sorry you have not got any joy today....apart from the amuse bouches.
My DS was nowhere near as bottle-refusenicky as your DD but I do remember well that feeling of going from pillar to post in search of answers and just thinking why can't anyone bloody well sort this out?
I think larrygrylls and bamboozled have made really good points. The rules used to be that you had to be ordinarily resident in UK or EEA to qualify for NHS treatment but I don't know a) whether this has changed or b) whether hospitals have some discretion to treat individual patients who may not qualify.
In your position I would do the same - throw money at it until next week is done with at least. Then you can think about other options, including the NHS.
Oh love - it's all so hard isn't it
Your MIL is sweet though! See what she'll whip up for breakfast tomorrow that might temp Little Miss Refusnik - every little will help until you get this sorted.
If it were me, I'd call/email/send smoke signals to Mike Thomson, tell him how much weight DD has lost this past week/fortnight/whatever and BEG him to see if he can't fit you in sooner.
We're all thinking of you
Just to clarify, we were went from the Portland to GOSH for testing but privately... Tests were covered by our insurance company - I didn't realise you could have private tests done at GOSH, but we did so I guess it happens - this was for a barium meal on a 7 month old, which I guess the Portland didnt do inhouse.
My pesky one - I can say that wrily now, but was at my utter wits end, stopped feeding at 5 weeks as apparently babies can associate things (bottle/boob) with pain that early on... We could only feed her in her sleep, as she still sucked without realising what she was doing... Tricky if she had been my first - damn near impossible with a sister 16 months older... Once we got to the bottom of it, proper meds and proper medical support, life became so much easier.
She's fine now, skinny slip of a thing, and a fussy eater but give her the things he likes and she eats like a horse, really clever and really sporty (proud mum!) but when she was a baby, I couldn't see from one day to the next
I really hope things start to look up for you,
I hope you get some answers. Did you make an app with the guy in Singapore? (Global hospitals bingo!!) he's an endocrinologist. Tbh wasn't sure why you'd not been told to see one of those due to the ftt/growth etcetc? But doesn't matter. As long as there'll be answers. Hang in there. Xx
Thank you everyone. We are now feeding the bottle in the drawing room with the videos to see what that does. No improvement really. Have her lunch and she vomited it back up in protest
Basically whatever else is wrong with her she needs calories. I can see her ribs now.
I did look up the NoTube site but am a little scared as dd has no weight to lose and it seems a little extreme. I would feel better about it if she had eg a kilo of leeway.
Hope the Portland are good. Am tired of docs not taking responsibility and passing us forward. Don't care if the Portland are rude / strident and or annoying as long as they HELP.
Hi Ophelias, just checking in on you and sorry to see your DD's problems are no better. It must be gut-wrenching for you, the worry. I see this thread is a few days old now but I hope that perhaps things have stabilised until you go to the Portland next week. FWIW, we went to an endo there who used to work at GOSH, and he was the first to clinically diagnose DS1 and was a huge help in setting out the begins of some sort of treatment protocol. Good luck, thinking of you all.
Thanks Tangled she's drinking OK with TV and happy clapping. Food not so good but we have backed off now as she just SCREAMS. My DH goes back to Asia on Friday and I won't see him for a month so not looking forward to that. Important for DD though.
Deep breathe and onwards!
Am wondering how the heck one gets from London to West England on a train with a baby, cot, stroller, car seat and suitcase
Hi Ophelia, I didn't want to read your thread and run, even though I have very little to contribute. I just wanted to mention that all three of my daughters weighed 7 kg at 12 months (having stagnated from around 9 m onwards as their activity levels increased - the older two of the DDs were walking at 10mo). DD1 and DD3 were tricky little monkeys to feed. DD1 is now 17 and a perfect height and weight for her age. I was worried by health visitors a lot when DD1 was small. DD2 was similar to DD1 so they worried me less about her not eating.
In the end I fed DD3 in front of the telly- with her eyes glued to
fecking Zingzillas, I could get a decent amount of breakfast down her and eating something seemed to kickstart her appetite; this was when she was a bit older than your DD is now as she didn't really start solids until 10 mo despite having been introduced to them from 7 mo. When she was really off food (ie when was unwell), the only thing she would accept was formula and breast milk, which she basically lived off from birth to 10 months. DD3 is the only one of the 3 DDs where I've really had to cave in and give her what she wanted or she'd just not eat. (so much for people saying "she'll eat when she's hungry"- she never appeared to equate feeling hungry with eating). I have been known to feed DD3 utterly inappropriate things like chocolate just to get some calories into her.
I hope you get some answers soon- it's so worrying when you have a child that just won't eat. I know this sounds stupid (and given that her weight loss as you've charted in on this thread seems to mirror lack of eating) but has she been screened for parasites and worms? Dniece had Giardiasis (sp?) for several months at under a year old (caught from her bathwater in London) and was diagnosed with FTT before they realised what the real problem was.
Mike Thompson is meant to be very good. Are you on facebook? Try the group "the Reflux Room" - i've had some excellent advice on there from some very experienced reflux mums. My son was tube-fed until 10 months and is now a bouncing 2 year old - typically fussy but eats well.
Thinking of you, hope this year brings some answers x
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