Re: Parents of kids on J tube

[Guest guest]

Jodi,

I think you are going to have to discuss this with Dr. H. I would

guess that anything that is spitting up is a potential for

aspirating and that is not good. It does not have to be formula for

aspiration to occur.

My educated guess is that does have a severe reflux problem.

He may not be refluxing formula now, but he is still refluxing some

sort of body fluids that are in his stomach and this must be

stopped. You do not want lung damage that cannot be repaired.

Believe me, I KNOW you do not want to go the Nissan route. It was

not a pleasant experience for Max or any other child who has had

it. But if you are left with no other choice, at least you can say

that you tried everything you could to avoid the surgery and this is

your last hope.

I hope, too, that I have not contributed to your hesitation to have

the surgery done. Max's was done at such an older age and it was so

much harder on him psychologically and physically. Then, when it

seemed all was well and we pulled the g-tube, he wound back with a g-

j tube and we felt so defeated. But is so much younger and

you are dealing with different issues here. For Max, we were

dealing with a whole psychological component that you are not facing

now.

Jodi, please contact Dr. H. and let her know what is going on. You

will not like her answer to the problem, but you already know in

your heart what you have to do. It is so upsetting, but unless

there is a miracle cure out there that we don't know of, you have

probably reached that point you did not want to reach. At least you

have proven that the formula itself is not responsible for the

reflux.

Let me know how things go. I will be thinking of you and hoping for

the very best.

Jodi Z.

[Guest guest]

Jodi,

Thanks for your reply. The fact is, I have emailed Dr. H and told

her EVERYTHING! Maybe it was too much! We all know how she likes us

parents to keep things simple and to a minimum! LOL! I have not

heard back from her. So, I was starting to think that maybe I have

nothing to worry about, because apparently she is not worried. Well,

as I watch him day to day, I can't ignore what is going on. My gut

is telling me that this isn't right. What I will do, is email Dr. H

once again, and also get a hold of his pulmonary doctor who has seen

us through this whole thing. As, they are the ones that have been

speaking with Dr. H. Yes, you are right. We do finally have

concrete evidence that has severe reflux. That is why we put

in the J tube, and also to help with the aspirating. I appreciate

your concern and your help in this situation. I know you will be

thinging of us, and I know I can count on you to support us through

this. Thank you for all you have done for and I since first

meeting you in New York. And I also wanetd to tell you. Do you

remember giving him the Pat the Bunny book? Well, let me just tell

you. He loves that book to this day! ) Thank you so mcuh for

being so warm and caring.

I will keep you updated on what goes on,

Jodi R.

Jacib, 18 lbs. 14 oz., only med is Prilosec and I wonder if it

does what it is supposed to!? Let's hope with it does considering

how much he is spitting up lately!

> Jodi,

>

> I think you are going to have to discuss this with Dr. H. I would

> guess that anything that is spitting up is a potential for

> aspirating and that is not good. It does not have to be formula

for

> aspiration to occur.

>

> My educated guess is that does have a severe reflux

problem.

> He may not be refluxing formula now, but he is still refluxing some

> sort of body fluids that are in his stomach and this must be

> stopped. You do not want lung damage that cannot be repaired.

>

> Believe me, I KNOW you do not want to go the Nissan route. It was

> not a pleasant experience for Max or any other child who has had

> it. But if you are left with no other choice, at least you can say

> that you tried everything you could to avoid the surgery and this

is

> your last hope.

>

> I hope, too, that I have not contributed to your hesitation to

have

> the surgery done. Max's was done at such an older age and it was

so

> much harder on him psychologically and physically. Then, when it

> seemed all was well and we pulled the g-tube, he wound back with a

g-

> j tube and we felt so defeated. But is so much younger and

> you are dealing with different issues here. For Max, we were

> dealing with a whole psychological component that you are not

facing

> now.

>

> Jodi, please contact Dr. H. and let her know what is going on. You

> will not like her answer to the problem, but you already know in

> your heart what you have to do. It is so upsetting, but unless

> there is a miracle cure out there that we don't know of, you have

> probably reached that point you did not want to reach. At least

you

> have proven that the formula itself is not responsible for the

> reflux.

>

> Let me know how things go. I will be thinking of you and hoping

for

> the very best.

>

> Jodi Z.

[Guest guest]

--- Jodi,

Sorry to hear the GJ tube did not resolve this issue. Just noticed

that is only on Prilosec, have you tried Prevacid? TJ has

been on each, Prilosec, Zantac to name a few, and the only one that

really did the trick is Prevacid. I have it compounded at the

pharmacy so I can put it into his g-tube. Maybe this is one last

thing to try.

As Jodi Z. mentioned, the fundo. may not resolve the reflux either

but it is your last ditch effort. As you know you really need to do

everything possible to protect his lungs. Maybe you can talk with

Dr. Spigland and she can ease some of your concerns. Will you have

her do the surgery?

Let me know what you decide,

Meribeth