AOSupport

:oHI TO ALL,IM KERRY MOTER OF DAISY,SHE IS 2MONTHS OLD AND HAS THE USUAL NO SKIN,SKULL DEFECT ON HER HEAD,BEEN DIAGNOSED WITH AOS,ALL OK UNTILL NOW WE HAVE BEEN STAYING AT GREAT ORMOND STREET HOSPITAL,LONDON AS DAISY IS LEAKING CSF, THE CLEAR,FLUID THAT DOESNT CLOTT,ANY INFO NEEDED ASAP, ALSO THE REST OF HEAD IS BLEEDING, NONE OF THESE WERE OCCURING BEFORE,AND I CANT SEE ANY INFO IN FORUM,EXCUSE MY SPELLING AND LACK OFINTRODUCTION,BUT IM REALLY WORRIED./ TIRED/STRESSED....INFECTION!!!,, ANY INFO GREATLY WANTED, PLEASE POST OR E'MAIL ME TODAY, AS I NEED HELP NOW, THANKS XXXXXXXXXXX:o

I am not sure about the CSF. What do the doctors tell you? What are they doing for it? As far as bleeding the only thing that worked for us was pressure. We would dress the wound then add a folded piece of gauze on top of that for added pressure then wrapped his whole head up to hold everything in place. Hope you find some answers! Sorry I can't be of more help.

Ky's Mom at June 16, 2010 at 11:12 AM

I am not sure about the CSF. What do the doctors tell you? What are they doing for it? As far as bleeding the only thing that worked for us was pressure. We would dress the wound then add a folded piece of gauze on top of that for added pressure then wrapped his whole head up to hold everything in place. Hope you find some answers! Sorry I can't be of more help.

ok,bleeding stoped,csf leak has calmed down,we were due to go to theatre to change dressing,as they were  concern for a big bleed,we made it to theatre but they couldnt risk putting her under as she stoped breathing 2x,'apnea' they say,all in all this has happened 5 times since birth. Daisy couldnt leave it at that so has added a urine infection, still with the steph group g infection on her head also,and after further investigation we find she has water on the lungs!, kidney scan tomorrow. (3rd one!) is now also taking iron due to heamaglobin being low,we only came for a general appointment june 2nd!!, ive been in hospital 35 days out of the 65 shes been born,i was also in 3weeks before birth,due to unexplained heavy bleed. my kids,Kyron and Izzabelle are coning to visit tomorrow,i miss them so much,and they miss there new sister,this is all so crazy. Whar a day,daisy still smiling,as we sit and watch her breath...xx

and your Ky's so sweet. looks abit of a  cheeky monkey in picture xx thanks for reply xx

update,daisy syill home, csf doesnt seem to be leaking,tilted he basket(gravity)and generaly never let her get stressed,cry ect...to prevent presure,hole closed natually in end,head is covered with mepore,me and parner change dressing about 2xweek,or basically when it smells or leaaks though. slower healing as this was the area wiv less layers of...umm flesh,i guess??, the whole area had no skin,but some was fleshier than others. Daisy still has her apnea mat at night,but hasnt had any attacks,i pushed to get her heart scan moved forward,we had that and the hole is getting smaller,tho there want to keep an eye on pulmonary arterial stereios(totaly spelt wrong,sorry) thinning of the arteries, she has been on ati-biotics since birth,general has a bug on her head,if it enters the blood it causes MRSA, and bacterial meningitus,so she on the anti-biotics as a prolactal,(incase) so very intence couse at high dosage,but im sure we'l cross that bridge. everyday is a battle with doctors,money,housing issues,medicines,childcare(no-one will take daisy for even for 10mins,rrrr i need a break!!) thankyou for the emails,im slightly calmer now,looking back,is horrid,i know things will never go to plan, but when you get this devistating news,and doctors have breif knowledge , its sites like this that are your rock, thankyou to all, will keep u posted, hope all is well out there,,xx and thanks to any aos angles,please keep guiding us xxx