Will Jayden have to be on BIPAP for the rest of his life?

[Guest guest]

Hello all,

I have a question that has really been weighing on my mind a lot lately. I'm

hoping some of you guys with older CHARGE kids can give me some insight? I need

to know if BIPAP is something that can eventually not be needed anymore? I have

asked Jayden's pulmonologist and he said that more than likely Jayden will have

to sleep with it on for the rest of his life. I'm hoping that he's wrong and I

know that doctors don't know everything, but he really seemed convincing when he

said it. I'm not complaining by any means because I would much rather have

Jayden on BIPAP forever instead of having to have a trach and a ventilator but I

would love it if we didn't have to depend on it to keep Jayden breathing when

he's asleep. I've noticed in reading that there are several kids on this

listserv that seem to have only mild cases of CHARGE and don't even require any

kind of respiratory support and then we have some severe cases similar to

Jayden's issues. Any feedback is greatly

appreciated.

Thanks,

Vicki Fields (Jayden's Mommy)

www.caringbridge.org/visit/jayden

---------------------------------

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

vicki i dont really no but in my opinion it depends on the severity of the

breathing probs my old sleep speiclaist said most people do grow out of

aponea by the age of 18 as they get bigger and stuff but then he didnt say

all he just said most i was one of the moderate to severe ones i had cpap

and eventualy have grown out of it i still do have a mild aponea but ti

doesnt need to be treated ocasionaly if im sick or really tired ill snore

that just me my airways were very narrow certain drs have pushed for tonsil

and anoid remvoval but ent wotn do it coz of the palate hope this helps hugs

ellen

>

> Hello all,

>

> I have a question that has really been weighing on my mind a lot lately.

> I'm hoping some of you guys with older CHARGE kids can give me some insight?

> I need to know if BIPAP is something that can eventually not be needed

> anymore? I have asked Jayden's pulmonologist and he said that more than

> likely Jayden will have to sleep with it on for the rest of his life. I'm

> hoping that he's wrong and I know that doctors don't know everything, but he

> really seemed convincing when he said it. I'm not complaining by any means

> because I would much rather have Jayden on BIPAP forever instead of having

> to have a trach and a ventilator but I would love it if we didn't have to

> depend on it to keep Jayden breathing when he's asleep. I've noticed in

> reading that there are several kids on this listserv that seem to have only

> mild cases of CHARGE and don't even require any kind of respiratory support

> and then we have some severe cases similar to Jayden's issues. Any feedback

> is greatly

> appreciated.

>

> Thanks,

>

> Vicki Fields (Jayden's Mommy)

>

> www.caringbridge.org/visit/jayden

>

>

> ---------------------------------

> All-new Yahoo! Mail - Fire up a more powerful email and get things done

> faster.

>

>

[Guest guest]

Hi Vicki,

I'm not a regular poster here but I have a son , who is now

(almost) 8. When he was 6 months old he was trached after a nasty

bout with RSV, he was unable to be extubated from a vent for 7 weeks

s they trached him. Then after they trached him he still had a

really hard time being weaned from the vent. We were sent to

Stanford hospital for a 2nd opinion (we're Kaiser patients) because

no on could understand why after the trach he was unable to come off

the vent.

Stanford immediately suggested BiPap and told us that the BEST we

could hope for was for him to be off an hour a day in 2 years. I

was HEARTBROKEN. To me it just felt like so much more than what we

had been dealing with. Anyway they sent us back to Kaiser to await

the BiPap. Our regular ENT told me the day we got back that he

didn't believe it. He thought that just needed a longer period

to heal from the RSV. We never did get that BiPap machine. was

decannulated when he was 2 1/2 (almost 2 years to the day of getting

trached) and we've never looked back.

Anyway, not sure where you are but maybe you want a second opinion?

In our experience pulmonologists seem to by UBER conservative. I'm

so glad that we listened to our ENT instead.

Moriah

http://moriahbettencourt.typepad.com

>

> Hello all,

>

> I have a question that has really been weighing on my mind a lot

lately. I'm hoping some of you guys with older CHARGE kids can give

me some insight? I need to know if BIPAP is something that can

eventually not be needed anymore? I have asked Jayden's

pulmonologist and he said that more than likely Jayden will have to

sleep with it on for the rest of his life. I'm hoping that he's

wrong and I know that doctors don't know everything, but he really

seemed convincing when he said it. I'm not complaining by any means

because I would much rather have Jayden on BIPAP forever instead of

having to have a trach and a ventilator but I would love it if we

didn't have to depend on it to keep Jayden breathing when he's

asleep. I've noticed in reading that there are several kids on this

listserv that seem to have only mild cases of CHARGE and don't even

require any kind of respiratory support and then we have some severe

cases similar to Jayden's issues. Any feedback is greatly

> appreciated.

>

> Thanks,

>

> Vicki Fields (Jayden's Mommy)

>

> www.caringbridge.org/visit/jayden

>

>

> ---------------------------------

> All-new Yahoo! Mail - Fire up a more powerful email and get

things done faster.

>

>

[Guest guest]

Hi,

I'm just generally in favor of getting a 2nd or even a 3rd opinion on

serious medical issues with our kids. Our is now 22, but in the

beginning we were told that she would be dead within a very few months.

There were many other wrong visions shared with us. A local

developmental ped eventually started asking me to talk with other parents

about the problem with drs here giving dire warnings, but I couldn't do so

then. I was so very scared of giving other parents false hope. I just didn't

understand the scope of the problem.

I understand that Stanford is great (both Andy and I worked there), but no

one - and no one team - is necessarily enough. I know how hard it is to

gather the energy to go on, but give it a try.

My thoughts are with you. Martha

Professionals on the list: there's deafblind expertise in San Fran (or at

least there used to be); anyone have names of people involved with

CHARGE?

[Guest guest]

david browns been to my house out here LOL

>

> Moirah,

> we all bow to Brown (just reading that would make him die of

> embarrassment). You are sooo very lucky to have him! And the other person is

> Jackie Kenley--she is a so great, herself, and a wonderful resource. Lucky

> Californians!!

>

> pam

>

>

> Re: Will Jayden have to be on BIPAP for the rest of his

> life?

>

> Are you here in the Bay Area? We live in Half Moon Bay. Like I

> mentioned we're Kaiser patients & so most of our Drs are there but

> we have FABULOUS Dr's through there. Is Kaiser an option for you? I

> could give you some names, especially of our ENT. The thing with

> Stanford is that they see the worst or the worst all the time so in

> our experience they jump to " worst case scenario " first. Also

> sometimes the teaching aspect brings in a whole other thing about

> getting to try out new techniques. The few times that has been

> at Stanford have been very bad experiences for us.

>

> There is a deafblind/CHARGE specialist here named Brown. He

> used to come & see . He's an amazing wealth of info & I would so

> love to have him see now. CA Deaf/Blind Services is who he is

> with but last I had heard they lost the funding that allowed him to

> see the individual kids (or something like that). There is also a

> lady that is in there office who has an older daughter with CHARGE,

> I think her name is Jackie. Here is the link to their website:

> http://www.sfsu.edu/~cadbs/Graphic.html . This reminds me I should

> call them & see if they are able to do visits again because

> especially 's school would love to have him.

>

> Moriah

> http://moriahbettencourt.typepad.com

>

>

> >

> > Hi,

> > I'm just generally in favor of getting a 2nd or even a 3rd

> opinion on

> > serious medical issues with our kids. Our is now 22, but in

> the

> > beginning we were told that she would be dead within a very few

> months.

> > There were many other wrong visions shared with us. A local

> > developmental ped eventually started asking me to talk with other

> parents

> > about the problem with drs here giving dire warnings, but I

> couldn't do so

> > then. I was so very scared of giving other parents false hope. I

> just didn't

> > understand the scope of the problem.

> > I understand that Stanford is great (both Andy and I worked

> there), but no

> > one - and no one team - is necessarily enough. I know how hard it

> is to

> > gather the energy to go on, but give it a try.

> > My thoughts are with you. Martha

> >

> > Professionals on the list: there's deafblind expertise in San

> Fran (or at

> > least there used to be); anyone have names of people involved with

> > CHARGE?

> >

> >

> >

> >

[Guest guest]

Hi Vicky,

My daughter, is 11. She was trached shortly after birth. We were

told it would only be for a while. She had bilteral coanal atresia. 7

surgeries later. at at the age of 8 it finally came out. 3 attempts as well.

We

were so happy. Then she started desatting at night, snoring etc. she went on

BIPAP. I thought it was only for a while as well. 6 mos later we did a sleep

study, it showed 35+ apenas in an hour! We were told she would probably

always need it. I was really bummed. I wrote to this list serve, got some

hope, , went through the same thing. I was so frustrated at first, she

hated the mask, we needed a custom mask, over the nose and mouth (she still

had

one nostril closed). Last fall, her ENT said he needed to open the nsoe

again (7th time). He wanted to wait until spring, I said no, now! he did it

Nov 8th. 12/28 i kep the BIPAP off that night, It was only needed duriing the

night. 3 nights later she still was OK. She strugled a little, but i

pushed her, when she would snoar, i would reposition her, comfort her etc. THe

nights were long, but evetually it was 3 months, NO BIPAP! Now here we are 10

months no BIAP. I am told not to get rid of it yet. so its at her bedside.

But it will take a lot for me to put it back on.

So there is hope. I questioned some nights, should i put it on? I was told

if she is truggling, her days would be rough, she would be tired. But i

weighed it out, and she did ok.

Do you have a trach? With the trach it wa kinda the same thing in the

begining.

I find with everything w/ if we make it to easy, she takes the easy

route. When I challenge her, it usually is well worth it.

Do not give up.!

Cathie, mom To

[Guest guest]

Moriah,

I don't believe absolute terms like never or always should be used when

talking about our children. Doctors always have to give the worse case

scenario.

But they aren't God. I agree with Martha, get a second and third opinion.

But give it time.

Who knows what the future holds, but don't give up hope. It'll get you

further than you think.

Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

[Guest guest]

u can even get fourth opinons if you want cant you LOL

>

> Moriah,

>

> I don't believe absolute terms like never or always should be used when

> talking about our children. Doctors always have to give the worse case

> scenario.

> But they aren't God. I agree with Martha, get a second and third opinion.

> But give it time.

>

> Who knows what the future holds, but don't give up hope. It'll get you

> further than you think.

>

> Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

>

>

>