Posted by nils on 7/22/2008, 5:25 pm, in reply to "Re: absent gag reflex"
202.7.166.140
Dear Nicola,
Firstly I feel for what you are going through it is very stressful. Nina is a month old, and she was rather sleepy to begin with too. The doctors were rather negative towards Nina in the beginning too, i think you should remain hopeful, things do change and doctors are keen to give worst case scenarios in order to protect their backs from suing.
The neurologist is concerned about Ninas absent swallowing, sucking and gag reflex everything else is within normal. The latest update is that she will be having a peg put in for feeding, so that means another 3-4 weeks in hospital before discharge. WE will also be sent home with suctioning, a c-pap machine as well as an apnea monitor. Today they will be coming over with the rental equipment we will be taking home and connecting Nina to it so we are familiar with the equipment we will be using at home.
A friend suggested the use of acupucture to kickstart the nerves in her throat hopefully stimulating some swallowing, i havent looked into it yet but i will be investigating it. Keep us updated, hopefully we can help each other.
All the best, Nils.
--Previous Message--
:
: Hi again,
:
: I don't know whether your little Nina has
: the same problems as Lola but it does sound
: similar. Lola is 2 weeks old today and she
: is in fact very sleepy. She only wakes up
: for a few short bursts per day. I think the
: longest she was awake for is about 40 mins.
: She is also very floppy when she is asleep
: which leads the neurologist to say she does
: have some abnormalities there.
:
: I had a normal pregnancy and a virtually
: normal labour, She is my 5th child and all
: of the other 4 children are perfectly well.
: We don't have any family history of anything
: like this so it is quite a shock to us to
: find such a sick baby.
:
: The doctors don't hold much hope for her in
: terms of improvement. They can't really give
: us a diagnosis but have told us her
: prognosis is not good at all. She also was
: clear in her MRI and an EEG and also a
: lumbar puncture to test for and infection.
: These have all come up clear so they have
: ruled out anything there. She is currently
: in PMH in Perth.
:
: She has a low to no swallow reflex, no gag
: or suck reflex.
:
: How old is Nina? Are any of these symptoms
: similar to Nina or is it just the reflex
: problem that is similar?
: --Previous Message--
: Hi Nicola,
:
: Seems like poor Lola has the same problems
: as Nina. Nina was born pretty much term at
: 37 weeks, so a bit on the early side. It
: was a pretty uneventful pregnanncy until
: about 2.5 weeks before her birth, when
: Claudia was dianosed with polihydramnious
: (still not sure how u spell it), too much
: amniotic fluid. Towards the end Claudia
: found it hard to move, and her stomach
: muscles tore apart. When Nina was born she
: didnt take to the breast and started going
: dusky as she was having apnias. A whole lot
: of tests have been done on Nina, but
: basically the only thing they can find wrong
: with hsr is the absence of gag reflex,
: little or no swalloing and sucking as well
: as risk of sleep apnias.
:
: A neurologist has seen her and gave us some
: positive hope, he had treated similar cases
: and said that with perseverance and a good
: speach therapist, these reflexes will
: improve, as on a neurological level
: everything else appears normal and her MRI
: scan came back normal. The speach therapist
: gave us some exercises to help stimulate
: Nina's missing reflexes. However the
: nurologist said we were likely to have
: feeding difficulties for the 1st
: months/years of her life, but that things
: should get back to normal by 2-3-4-5 years
: of life. WE are currently tube feeding her.
: If things dont improve by 6 months a peg
: might have to be put in to the stomach but
: we are not at that stage yet.
:
:
: We also had a sleep study done on Nina and
: they concluded that she would have to go
: home on c-pap whilst asleep and an apnia
: monitor as her air ways were shown to
: collapse whilst asleep leading to apnias.
: Again this should improve as her small chin
: grows making the air passgeways larger.
:
: WE are also taking home a suctioning device
: to suck up her saliva and secretions which
: she does not swallow. This will probably be
: the hardest thing to deal with, as she gets
: congested and starts to gurgle quite often
: and thats when she need to be suctioned.
: When shes asleep there seems to be less
: secretions, so there will be some respite.
:
: Its a stressful time for us as im sure it is
: for you, but Nina is so beautiful and there
: are lots of good moments in her company.
: Knowing there is light at the end of the
: tunnel is good too.
: Could you please tell us more about what
: your doctors have been saying, advising?
:
: All the best, Nils, Claudia and Nina
:
: --Previous Message--
:
: Hi there, We have a little baby Lola with
: the same symptoms as ypur Nina. She has a
: small receding chin with no gag, suck or
: swallow reflex. I would be really interested
: to know what your doctors are saying and
: what her prognosis is. Did you have a normal
: pregnancy? to full term? Just wanting to
: know someone in a similar situation.
: --Previous Message--
: Hi there,
:
: We have just had our beautiful Nina born to
: us. ALthough she hasnt been diagnosed with
: PRS she has similar difficulties, high
: arched palate (but not cleft palate), small
: receding chin, absent gag reflex and
: difficulty swallowing and sucking. Her
: inability to swallow her secretions means
: that she must be constantly suctioned as
: these clog up her air passage way and is on
: a constant pressure air support system,
: whilst asleep. Is there anyone out there
: who was a child with similar dificulties,
: namely inability/difficulty to swallow, suck
: and absent gag reflex? COuld anyone tell us
: avenues of treatment and what to expect in
: the future? We have been staying at
: sydney's westmead childrens hospital for
: exactly 3 weeks today. Best REgards, Nina,
: Claudia and Nils
:
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