Damiens clinic visit

[damiensmom]

Well its been nearly a week since Damien went to clinic and I still can barely bring myself to post this topic. Damien gained weight again. Hes doc said he was doing qa little better even but on the other hand she didnt discuss she flat out said were gonna go ahead with a mickey button and said when you go to the G.I Doc today at 10:30 I said I didnt know I had an appt. Anyway she gets on phone and calls and we were cancelled and not by me .So she calls in a favor and boom were to go.Ill try to make this short. I tried to talk with her but as we were a squeeze in she did all the talking . She uped the Zantac gave us another script for G.E.R.D i CANT RECALL THE NAME WE COULDNT GET IT ANYWAY THEY HAD TO FINAGLE THE DOSAGE AND THEY MAILED IT TODAY(OOPS CAPS)and I told her I want more time I want to see if we gret the reflux under a little more control and soon hell be able to drink scandis, carnatoin jr. well she said well see how this goes told me log all bottels, ounces, time . And she felt hes lliver and then hes cf doc was there to talk to the G.I doc and she comes in matter of factly and says were gonna have to have a G tube .I said again well soon she cut me off somtimes these kids need 6000 7000 cals and you cant get it in them I said Damien eats great I never force him we have a healthy food realonship I would like to keep it that way and im sure soon. again cut off this wi;ll be easier .At that point I said nothing else. Like I care whats easier. We aint looking for the easy road I was a tad offended. So I drove home very in innerturmiol what the F***. Why is it they are so attached to a feeding tube? And am I so attached to him not having one that I am hurting him. I look at him sleeping in hes car seat a happy baby looks good fat cheeks rosey glow. Does not l;ook underweight small yes. Famished no. Everyone I know I trust to tell me the honest truth says they cant imagine why they suggest it.I know I must find out my rights to consent, research tube feedins and g.e.r.d. And think real hard about this. I know nothing short of a educated , point of view,and knowledge of my rights is gonna get us any where. I found out it is extremly risky to do tube feeds with a child with g.e.r.d. Aspiration, Phemonia,anatomic disruption,skin breakdown vomiting, stomach pain. And I also looked up the pyscological affects between mother and child when feeding issues arise or bond is broken or worse not formed I wont even go into that.I know I will have to exercise my right as a parent as far as consent goes,I know it will be put across to me as if Iam making a harmfull decision. I will reconsider my decision if Damien loses weight 2 months in a row. Or if after we have tried cal. supplements when he is older . He will also be able to have a say later in what he wants. untill then I have to say I choose not to sign consent. I know others have had to make these choices and I want feedback. I will take all replies favorable or not and I will not be upset by your opinion I may see somthing I looked over . sorry so long P.S. and info if you have refused to sign consent what to expect

 

[2005CFmom]

Sorry you had such a rough appointment. It must be frustrating to have the doctors push so hard for the G-tube without even really listening to you.

I don't have any experience with g-tubes, so I can't give advice on that. But it does seem like you have done alot of research on it and have come to the conclusion that he does not need it right now. Trust your instinct, feel confident you did the right thing. But like you mentioned, be willing to change your mind if conditions change and he does seem to need it.

I just wanted to let you know that you seem to be thinking this through correctly.....and hang in there!

 

[dyza]

Stick with what you feel and do not let any doctors push you around, while my wife was pregnant with Craig, we went to see the consultant we were told that he can be condescending. and sure enough started being a right pratt, I very nearly hit him, anyway the wife went to see the chief consultant and told her in no certain teerms that that doctor will never come any where near us ever again, and he didn't.
Dont really know if that helps or not, what I'm saying is YOU call the shots ultimately

 

[anonymous]

Aria,
I know exactly how you feel. I cannot tell you how many times I have had to go against what the doctors wanted to do. They started trying to discuss the feeding tube with me when my son was just a few weeks old. I told them flat out....certainly not they had not even given him a chance to gain weight on his own. Sure enough when i got him home and out of the hospital he gained weight just fine. I am so glad you want to give your son a chance to gain weight before considering a feeding tube. The way I look at it is there is just a whole new set of worries and complications that come with a feeding tube. Now dont get me wrong....if a child NEEDS a feeding tube that is one thing but just do it because it is easier....I am sorry but that is just not right. Anyway stick to what you think is best for your child....you have the FINAL say in his care.

 

[JazzysMom]

The biggest thing you need to remember is that YOU are the parent & will ALWAYS be the parent where as the Doctor might not always be the doctor. I am sure that if you truly saw he needed it or time proved that your way isnt working that you wouldnt be as resistant. I dont think its fair that they seem to totally disregard your thoughts on this. You need to gather as much strength as you can & stand your ground. Tell them in no uncertain terms that you want XX amount of time to prove he can continue to gain weight on his own & until that time expires you will not revisit this topic. When that time expires then you address accordingly. I am quite irate about this & want to give you the support you need to be a great advocate without overwhelming you!

 

[Abby]

We were lucky to have a doctor that listened to us. She wanted to give Abby a feeding tube but we begged her to give us a chance to get her weight up on our own. She was only a little over 10 pounds at diagnosis (5 months old) so we desperately needed to get weight on her, but I knew if we just got her feeling better and with enzymes that we could do it. It was difficult, tiring and a struggle most days but we did it. She is still small for her age, but on the growth charts and happy as can be. The threat of "THE TUBE" still comes our way as in "Well, her weights good, but I'd like to see a better weight gain next visit" type threat. It's usually enough to make us kick it in high gear again. Stick to what you think is best for your child, they can't make you sign the consent. Can you get a nurse to listen to your concerns and help rally for you?

 

[JRPandTJP]

What is his weight gain & percentile? And who on earth said 6000-7000 calories for a baby under 1 years old! That's crazy and I'd demand the research that shows that number. Give me a break. Who is it easier for, that's my question.

If he is healthy, eating well and not loosing weight (gaining well), I would get another opinion even if you have to travel to another CF clinic/pulmonologist farther away. I would tell them you not happy with the way they are handling his case and you are getting a second opinon (not where you are going) and that you will await their diagnosis/opinion before moving foward with anything. This is your right as a parent to look at all angles before doing something invasive like a G-tube.

Do you have a pediatrician and what is his/her opinion? They often will look at the bigger picture and balance out the CF perspective. THey could even be someone you "team" up with to show them you are managing weight gain well and going for weight checks ect. between clinic appts.

This sounds to me like they are trying to do something that accroding to you may be uneccesary and disruptive with out any concern for your family's wishes. Feeding tubes can/do disrupt the normal oral feeding on demand schedule in infants...what did they say about setting him up for difficulty eating later, ect.??

My son was off the charts until diagnosis. He slowly climbed to the 5th and hung out there for a few months (this is still growth and weight gain to stay in the same percentile BTW) and then at 9 months (with more food) started crossing over percentiles more each appt. By the time he was 18 months he had reached the 50%. My pediatrician told us that no matter what the challenges/condition for baby, consistent growth for that baby is what is important. They 50% isn't possible for some healthy kids either and there isn't anything wrong with 10th or 20th either...it is not necessarily a failure. It may be what the baby can do, it may be their size, it may be CF, it may be he'll have a growth spurt here and there and it will balance out later.... She told us as long as they aren't loosing weight and dropping in percentiles that is considered good growth.

THis is my opinion and I feel your pain and challenge. I had to really cover all my bases with them as well. THey seem to cool down once they get a little older but you have to be firm, protect yourself and do what is right for him. It is okay to find another DR. if need be. If another opinion and your pediatrician all see he is failing to thrive and needs the g-tube than you may have to accept this...if not, you will be stronger for it.

I'm sorry you are going through this...I will keep you in my thoughts. Take a deep breath, get your plan in mind and then carefully go through the steps you feel are necessary for your son. Would it be helpful to contact a lawyer to be sure you are covered and protected, while you are getting other opinions? It may give you some peace of mind...just an idea.

Warmly,
Jody

 

[JRPandTJP]

Oh and I noticed a lot of difference in weight gain after his reflux was under control as well! Until the vomiting slowed and his acidity went down his enzymes didn't seem to work as well. Once this settled he kept everything down and gained better. Jody

 

[anonymous]

Stand your ground. A medical license is not a license to be a jerk - that Dr. needs to shut up, slow down, and give you a chance to talk.

My son w/Cf has no feeding tube despite only hitting the 50% mark last winter; he spent a fair amount of time in the 10-20% range and had severe reflux until around 1 year but was always a good eater and has been in great condition with few CF-related problems.

It's a fact that being bigger is useful in battling CF. It's also a fact that not everybody gets big with or without CF and I think the CF doctors forget or ignore this and try to steamroller patients a bit. It may be well-meaning, but there's lots more to having a happy healthy life with CF than hitting the 50%+ mark on weight charts.

 

[MrEjaffe]

Well first off I would like to say, that a doctor that keeps cutting you off, really needs to be let go. We are finally blessed to have great doctors for our son now. In fact our new doctor won us over easily when he said, "Your the parents you know your child, im the doctor I just know about disease"
As for the tube, our 16 month old has one, he has had it since he was diagnosed(after quite a few major sugeries to his bowels), it has its up and down sides. Our of our issues with it was, we wanted our son to be as normal as possible despite his cf. Anyway here you go Pros and Cons.

PROS
It is very easy to use, and to feed.
Its easy to get extra calories in him when he needs them.
If he is sick throwing up alot, just pour in some pedalyte to re-hydrate him.
Does not hurt them.
The mickey is low profile, sticks out but only slightly.


CONS
Feeding through a tube takes away the eating and bonding experience.
The more we he has to eat through the tube, the less he eats orally.
May agitatate his GERD, food stays down alot better when taken orally, this could even spiral into the docs pushing for a fundoplication sugery.
He plays with it alot.
We are always worried about it getting caught on something and coming out.


There you go, good luck

 

[anonymous]

Go with your heart,My daughter just had a g-tube put in on June 8 and it was the hardest thing I every had to do she is 7 and weighs 39lbs always been small but this came down to her life,the doctors said if she doesn't start gaining weight she would not live to see ten.try your hardest to help him gain weight,we found a new chocolate shake made buy Hormel called mighty shakes and she loves them they are 6oz and 300 calories.

Good luck!!

 

[damiensmom]

thank you so much for your replies, I needed them

 

[damiensmom]

Again thanks so much and I know when hes reflux settles down it will be better. And I feel there is alot more to living well with cf than 50 % so welll said. Damiens Doc is the director of our cf clinic and she seems to leave me at a loss for words at times and I told hes nurse and she just stood outside the door with that im sorry face when Doc said were gonna get a mickey button.I Know I will just half to go all the way and flat out refuse consent I have made up my mind. I will as suggested give a time line for reconsideration. I will not deny him if he is losing weight. Damien has not been sick at all cf related or not. Doc said herself this last visit Damiens lungs were clear. Oh I have not put any ceral in Damiens bottels and he has not spit up in 3 days. Praise god. Im hoping for a little more weight gain. I cant attach a pic to a post to save my life.I would love to share my BEAUTIFUL BOOTER.

 

[eli]

Aria, you do what your heart tells you. You know your son more than the doc's will ever know him.
I'm very surprised that they are realy pushing for him to have one. My daughter is still so little and not chubby at all.She has only just made it on the 10% in heaight and weight and this GI thing has never been mentioned to us.
Only you know what is right for your son, don't let it get to you and take some time to think things through.

 

[anonymous]

if they get too pushy and you feel they will not take no for an answer is there a possibility of getting a ng tube instead. tube through the nose to stomach for feedings instead. don't know how secure or comfortable they are. would allow for feedings and is completely reverible-no surgery. i don't know. just a thought.