Some babies dont tolerate the thickner well I would find another paed for sure he sounds very uncaring. I'm in Vic so can't help there but may post about paed on sunshine coast I'm sure other mums will be able to help. Ash had a barium swallow when he was two months so should be ok at four months. It sounds like u guys need to see a neurologist they are really good at explaining everything including MRIs we are having our 3rd later this year. If bubs isnt aspirating I'd say the feeding issues are related to reflux and similar to my ash not learning about hunger and missing out on learning to feed in the beginning due to the ECMO and other medical issues. Really feel for u, feel free to pm me if u have any other questions and I might be able to help.
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27-04-2012 16:51 #11
27-04-2012 17:23 #12Senior Member
- Join Date
- Jan 2012
Hello, I thought I would offer some advice as we have been through similar.
Firstly , I would definently organise that Barium Swallow test before introducing solids, you don't want her to aspirate and end up with pnemonia
Did you say she has had a MRI done? I Also agree with getting a neurologist and new pead, ones that can put their heads together.
Has she had any seizure activity or do her eyes flicker?
I hope you find support and friendship here, this is a whole new world and can be so hard, it gets so frustrating with doctors and friends and family, because they just don't understand . And you just want to help your baby ! Big hugs xx
30-04-2012 15:09 #13Junior Member
- Join Date
- Apr 2012
We have a barium swallow booked in for next thursday and then looking at doing the modified barium swallow maybe next month.
Yeah Baby G had an MRI of her brain and spine but had to have them without a GA as she was high risk due to lung issues so just had to wrap her and she was put in a knee brace to try and hold her still. The results from both came back "clear" but there was some movement in both scans but corrected for the movement they said nothing identified.
After the 2 barium swallows the neurologist is our last spec to cross off the list. She was assessed at 2 months and given the all clear by neurologist but she wanted baby G to see metabolic geneticist first and have MRI's before seeing us again.
With regards to eye flicker she does move her eyes left and right very quickly sometimes. I have maybe seen her do this half a dozen times but my husband or mother have not - hence not very often and i was a bit concerned about it. She did have EEG in hospital and nothing identified. I figure eye flicker is to do with epilepsy ?? she has never had any seizures that we have seen or identified as that ???
21-08-2012 16:57 #14Junior Member
- Join Date
- Aug 2012
GDD & Axial and appendicular hypotonia diagnoses!
I'm a mother of twin boys aged 23 months corrected (they were 4 weeks prem). I finally got a referral from our GP (for a neonatal specialist who looked after them in NICU), when they were 12 months of age, as they were not meeting their milestones and younger twin had only just started crawling.
Twins, Boys, Prem - were the reasons for their maturational delay given to me up until this point.
They are still not walking, and the older twin has about 10-15 words, whereas younger twin can only say "mama" - with grunts, or other "wawa" babble sounds.
They're both lovely in nature, I would say older is more sociable - whereas the younger twin is more of a reluctant communicator.
However both they understand a lot more, than they can express/verbalise.
We have been seeing a PT since they were 14 months old, and have also started seeing a ST.
They have had several blood tests and all have come back "normal". I understand that the tests performed were to rule out any metabolic, degenerative disorders or "any nasties" as our neurologist has referred to.
Neurologist has given them the above diagnoses. They have not yet had an MRI scan, since this would require a general anaesthetic - and neurologist feels that a non invasive approach is better since they are not showing any signs of regression. However, if they are not walking by the end of the year, this will be highly likely to be performed early in the new year.
Autism has been ruled out
Muscular Dystrophy has been ruled out
We have a referral for:
a geneticist for further blood testing,
a dermatologist as their hair is very fine and brittle, and
a dentist as they only have their incisor teeth come through
Am I missing anything?
My family keeps telling me they will be "fine", however my partner and I don't know of anyone who is going through similar situation as us.
Will they grow out of it?
I mean, I know there is something there - and not knowing what it is... I can't explain it. I just want to help my kids.
Has anyone been in a similar situation? Any advise would be helpful.
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