Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Maya had tracheal stenosis and she would stop breathing if she got distressed. When they opened her up they found that her aorta was pressing on her trachea and she had to have an operation where her aorta was stitched to her sternum to keep her trachea open. This has left her with tracheo-laryngo-bronchomalacia caused by the pressure of her aorta and sometimes she still struggles to breathe especially when she has an upper respiratory tract infection. Her breathing is quite noisy and as a result she cant play hide and seek!! When she gets upset she still has stridor. Maya saw lots of specialist when she had the apnoea attacks and no one could work out why. In the end she had a CT scan which revealed something pressing on her trachea but not what it was. She had lots of laryngoscopies and bronchoscopies. Sometimes tracheomalacia is caused by a vascular ring so I would get it checked out if possible. The first time she stopped breathing she was 5 weeks old and I forgot how to resuscitate a baby. When she went to hospital I got the Dr to go through it with me and I needed to do it several times after that. I now carry a resuscitator which is easier than doing mouth to mouth. Maya is now 3. and we live in the UK. I have found that those in the US get faster diagnosis because of better health care and the fact that you don`t have to wait weeks/months for tests to be done. Caroll >From: >Reply- > >Subject: Digest Number 1782 >Date: 21 May 2003 08:26:08 -0000 > > >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. > >To unsubscribe -unsubscribegroups (DOT) >To search group archives go to: >/messages >------------------------------------------------------------------------ > >There are 12 messages in this issue. > >Topics in this digest: > > 1. Re: Quesrtion about Immunizations on IVIG > From: " tanya28claridge " <tanya.claridge@...> > 2. Couldnt breathe > From: " Falconer " <buttrfly@...> > 3. Re: Couldnt breathe > From: " Stefanie Magowan " <kmag@...> > 4. Re Breathing > From: " Falconer " <buttrfly@...> > 5. Breathing- > From: " Becky McClure " <beckymcclure825@...> > 6. Re Breathing > From: " Falconer " <buttrfly@...> > 7. Martha > From: NSUrunningmom@... > 8. > From: NSUrunningmom@... > 9. > From: " Becky McClure " <beckymcclure825@...> > 10. Re: KARIN > From: " Karin " <brighteyes18944@...> > 11. Re: Re Breathing - > From: " Kirstie and Magowan " <kmag@...> > 12. OT: Dyslexia too > From: dalurkes@... > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 1 > Date: Tue, 20 May 2003 09:25:25 -0000 > From: " tanya28claridge " <tanya.claridge@...> >Subject: Re: Quesrtion about Immunizations on IVIG > >HI >we have been told that whilst on IVIG does not need any >immunisations-however we are currently doing her antibody titres pre >IVIG infusion over three consecutive infusions....just to make >sure!!! > > >Mum to Jay (8) and (4) (PID, IVIG's and EGE, NG Neocate rice >and chicken) > > > > > > ph never got his 5 year shots b/c he was always too sick..... >now that he > > is on IVIG, he is doing so well... my question, can he get his 5 >year shots > > while on IVIG? Which ones can;t he have, if any? > > > > > Quote Link to comment Share on other sites More sharing options...
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