what would you do?

[suemp]

ok i will try explain myself the best i can
ds2 has had 2 seizures. one with a febrile one without and so they sent him off for an eeg which came back abnormal. he is slightly delayed in that he doesnt say anything yet nor does the normal babble, he grunts. (he is just shy of 15 months)
anyways his paediatrition wants him to get an mri done
BUT he was born with laryngotracheomalacia which means his trachea and larynx are floppy making GA more dangerous to the point 6 months ago the anethisists flat out refused to do it. i went back to the pre op today to once again have the anethesists refuse to do it so they have sent my info to the royal childrens hospital brisbane and want it done there as they are better equiped and more specialised (im on the gold coast so its not like im from a small country hospital)
i dont know wat the percentage of deaths with ga in children like my son is but its 1 in 20 will need an oxygen tube into their lungs after they come out of the GA and they cant say how long for but all children will experience some difficulty in breathing afterwards. they said if the trachea closes in down the bottom then its highly likely they could get the tube in to help my son :(
would you go against the paed and refuse the mri or would you get it done? like an abnormal eeg can mean scarring on the brain or other nuerological disorders but it generally is used to rule out things iykwim
thanks i hope my post made sense

and to the old man who said "thank god he's gone"as we were leaving the waiting room today after waiting 2 hours to hear that bad news i dont regret telling you you were mean and that you were a granky old *bleep*
vent over:banghead:

[suemp]

bump### anyone??

[kiwibird27]

Although the Gold Coast has a big hospital they are not equiped to deal with your son, I took my DD there and they had no idea!!!!! The children's hospital is the place, on-going seizures, depending on the type can cause brain damage, unless they are benign, You need a referall to a neurologist at the kids hospital to talk to u about this. With the info from the MRI will it change the treatment your son is currently getting?????

My DD has been tubed in Icu about a half a dozen times and it sounds worse than it is, with your sons issues though I really can't comment, Can't they just start meds and see what happens, When are they going to investigate his floppy airways issue

I don't believe your paed is qualified to be demanding an MRI... and should know anaethetists better than to just send u ..... U need specialists involved...u need a referall!!!!

[LivinOnAPrayer]

Hi! Im sorry to hear Kane's going through all this, its not fair. With the laringomalacia, dr's have told us that Alex is in the same boat come her GA and op in march. They told me she'll most likely need an icu addmitance instead of the usual recovery ward. But saying that, if the anethesist is happy to do the GA, they'll most likely opt for the vent anyway, to be on the safe side. I guess its something to discuss with your ent and pead. I gotta say though, the staff at RCH in radiology and ent and anethetics (sp!??) are so great. Any worries, call the team and they'll talk you through it (once you get that far!!)

How's Kane been though? I hope your all doing well!! Alex goes for an appoint with new peads on thursday about ng feed tube :fingerscrossed: it goes well!!

Good luck!

[Nowhere]

Hi again

I know how you feel as you know miki also has the laryngotraceomalacia to she also suffers with GA and all but one op she has needed to be intubated post op, but then if it needs to be done it needs to be done KWIM , and also saying that eac time she has been able to extubated and done wel on oygen and then room air

I think its good the the local hospital wanting it done at royal as its safer if they have all the equiptment there i know my DD can only be operated on at PMH any other hospital here will not take her

Good luck with the decision

what are they thinking ios casueing teh seizures

[suemp]

his seizures are minor. they are partial and he doesnt go fully out. his jaw shacks and he is not quite with it. the first went for twenty minutes and effected his breathing but back than his laryngotracheo was much worse.
he has only had 2 seizures that i have seen so i dont know if i really need the mri but if there was an abnormality i would kick myself for not getting it done.
in reply to kiwibird he has had a broncoscopy and the degree of his floppyness is type 2 which makes his 60-70 % floppy. they just saying he will grow out of it. even his ent specialist and the sleep study at the mater say dont worry about it. but than you have anethesists scarring the **** out of you

[kiwibird27]

Anaethetistes are like that though, they don't do anything thats too risky, Thats why u need the childrens hospital, more likely to get an anaethetists happy to do it because they have good professional ICU people to back them up. But if u find out that there is damage, will it change his treatment????? If not then maybe wait till he is bigger???

My DD had to go to surgery at 2am for an emergency central line, she was intravenously fed for a few months and was severly hypoglycemia and they couldn't get a cannular in. The anaethetise said to me down at theatres, my 3 month old in my arms, I was in my PJ's "Look she is probably going to die on the table anyway so I don't really know why we are bothering, I am not happy to sign consent with you, so your teams had better come and do it"
i THEN HAD TO HAND HER OVER TO THIS MAN....SHE MADE IT....HE MADE ME FEEL LIKE ****!!!!

[suemp]

My DD had to go to surgery at 2am for an emergency central line, she was intravenously fed for a few months and was severly hypoglycemia and they couldn't get a cannular in. The anaethetise said to me down at theatres, my 3 month old in my arms, I was in my PJ's "Look she is probably going to die on the table anyway so I don't really know why we are bothering, I am not happy to sign consent with you, so your teams had better come and do it"
i THEN HAD TO HAND HER OVER TO THIS MAN....SHE MADE IT....HE MADE ME FEEL LIKE ****!!!!

that is terrible :shame:

[suemp]

[QUOTE=kiwibird27;2268318]. But if u find out that there is damage, will it change his treatment????? If not then maybe wait till he is bigger???

QUOTE]

they probably wont. i mean i have epilepsy so i know the ropes sort of. i didnt need an mri to start meds. i dont think they would start meds as his seizures arent often nor severe.
and if there is some form of brain damage its not like they can fix it. he would just go thru therapy which he is already booked into anyways
and he isnt showing tumopur like symptoms
i have booked into today to see my gp to see what he thinks. i might try get a referral to see a nuerologists to see if an mri is necessary or just another test thats not needed