Fussy Feeders - Dysphagia - a possibilty other than reflux

[xxxkizzixxx]

Thanks so much for taking the time to help ( maybe you should work for the nhs ) ha ha.
My hubby starts a new job in a weeks time which funny enough has free bupa cover so we were thinking of taking that route. have to wait a couple of weeks first but seems like it might be the way to go  .... or just pay the money! ? !

After tomorrow i will be able to find out more etc as to why i have to wait till may when we are seeing the same doctor for the Ph probe.

once again thank you for your help ..... some times seem so alone with all this and the sleepless nights done help I have booked a nervous break down in for when this is all sorted

karen

[Debonair]

Lovely to see you still have your sense of humour  .
Ps. good luck tommorow

[colenliam]

Hi,
We finally got our appointment with the ped.  It is next tuesday.  Will post to let you know how it goes.  Wish us luck.

[Zacleo]

As I am reading this site, I can't believe how much this sounds like my little man!!  FINALLY, it looks as though I might have some answers.

I do have some questions if someone can help me??

My LO had a upper endoscopy last week, but dysphagia was not even looked at.  The paed thought that he might have inflamation due to his reflux ( now I am even wondering if it is reflux), but after reading all symptoms posted here, it sounds like classic dysphagia.  He won't take ANY fluids, put any drinking device near his mouth and he goes mad!  He will eat solids quite happily though, thank goodness.  (LO is 7 months).  Why will he eat solids though?

Surely the upper endoscopy would have shown something?

Other than an MBS, what other tests can be done?

How else can I get fluids into my LO other than tude feeding?  My paed doesn't want to do this as he will eat solids and "apparently" gets enough fluid this way.

Lo has not had any chest or respiratory infections, is this uncommon?

I have just rang LO's gastreoentologist and booked another appointment to specifically look at this possibility as the Paed thinks his drinks problems are behavioural!  I just can't understand how it could be.

Mel

[Debonair]

When we was desperate at one point our dietician advised up to try Nesquick a chocolate milk drink and start by putting it on his dummy get him used to the colour and taste, let him see how it was mixed then introduce it by suringe straight into his mouth, we used to let him play with the suringe and put strawberry jam on it he loved that in his sandwiches and got used to the syringe being part of his solids not his fluids. Then eventually he would take about 4 ounces out of a sippy of chocolate milk. Watch for thier poop it is very dark so don't be alarmed when they have this.

[Luke-n-Me]

Karen,

Luckily, Deb is able to offer you some advice as to how to deal with the physicians in the UK, I don't know anything about how your system works as I'm in the states.  But, I can tell you that I know that the UK is now so ill advanced in medicine that they should expect you to wait until May for anything when your lo has struggled for so long already.  Put up a good fight, you truly are your lo's advocate!

ColenLiam's mom, please let me know what you find out!

Mel,it isn't totally unheard of to not have had any major respiratory issues.  My son would get congested for short periods of time following a feed but it never developed into anything worse than that (thank heavens!) At this point, your lo is old enough that he has probably mastered the spoon quite well as it is a much more controlled way of eating.  Deb gave you some great advice on putting liquids on a binky or even just controlled straw trials (i.e., plug the straw with your finger and put some liquid in his mouth.  At your son's age, I would just work on open cup drinking and forget the bottle.  He's old enough to get rid of the bottle and though it will be messy, it's always better to get to a cup ASAP anyway.  I'm glad you've called your lo's GI doctor, hopefully he'll help you out.  At 7 mos., his drinking problem has maybe become behavioural at this point, but there is a reason for it, he didn't just decide he didn't want the bottle just "because", he's really too young to do things like that, something was wrong that made him refuse his bottle, whether it's dysphagia or something else! Let me know if you have more questions!

[Debonair]

my DS is now 13 months and I completely second what Luke-n-me just said.

[Zacleo]

Thankyou for your replies!

I have been trying an open cup, and LO was taking some fluid this way, so I will keep perservering with that.  He won't take a sipper cup and hasn't mastered the straw yet, but will at least put it in his mouth without screaming.

I am looking forward to seeing the GI in two days for some answers.

Thankyou again.

Mel

[xxxkizzixxx]

Well we have now had the ph probe ..... i took it out a couple of hours ago and hubby is taking the box to the hospital as we speak!

As for waiting till MAY I soon put the doctor straight on that one and he did say he would ring me hopefully monday with some news regarding the ph etc. I did say i would be ringing him EVERYDAY if he didnt

Another way I manage to get fluids into DD is to add water to her solids. She doesnt like the lumpy stage food only puree or finger foods so when she has puree I can manage to add maybe 2oz of water to that. Also another good one is yogurts or if too runny fromage frais
 
Now we are just playing the waiting game ! Still we have waited nearly 10 months so the weekend wont be too hard .... hope fully the results will show something ? If not Im not too sure what next.

Whats the next step? More tests? Or do we just do as the doctors seem to think and tube feed her till she leaves home lol How I can laugh i dont know but maybe its the thing thats kept me going these past 10 months

thanks girls for all the help 

karen

[Luke-n-Me]

Karen,

I'm, unfortunately, at a loss as to what to suggest now.  The speech therapist wasn't helpful and if you can't get a modified barium swallow completed, I don't know what to do.  Therapy is really the best answer, but unless you can find a different facility/therapist to help you, I don't know what to say!!!!  If you could move to Ohio, I'd love to help you, but basically you just need to hook up with a therapist that has some knowledge about feeding disorders in children.  Do you have a national organization that could help you find someone?  In the states we have the American Speech/Language Hearing Association, if you arent' able to find someone yourself you can call them and they can point you in some sort of direction.  Sorry, I don't think I'm being much help at this point!  I'm so frustrated for you!

[Debonair]

Karen

Any news???

[xxxkizzixxx]

hello all

well we now have the results from the ph probe NORMAL ! the doctor has said he cant think of anything else he can do  So we are yet again back to the start and left to cope alone once again.

We have another problem also now due to the tube feeding. DD has become very frightened everytime you go near her face ( cant blame her ) She has started to scream and hit my hand away even when trying to just give her the paci which she normally loves. She seems to be much harder to settle as she seems to be thinking everytime I go near her that something nasty is going to happen ( more tubes or sticking the tube etc)

Anyway the tube came out sunday morning so I decided due to her reaction not to get it put back in I have been managing to give her milk when shes sleeping etc and added water to her food.

I cant think what else to do !

How much fluid is safe for her to survive on ?

I cant believe we are back to the begining again. Shes 10 months old in a few days and this has been going on since she was born. Any faith I had in the uk nhs has gone.

Now Im left with a baby that not only wont drink and eats very little but also a baby that is terrified every time I go near her All this due to doctors who dont do their job!

the next few days Im going to be spending time with her trying to regain her trust again 

Karen

[Luke-n-Me]

Karen,

OMG!  I could seriously cry for you!  I swear this is the biggest shame!  If there were ANYTHING I could do to help you, I would.  Please don't give up, maybe even consider traveling a bit to find someone else who will help you, this is just ridiculous to me!   I can't even imagine that a doctor would just turn you away and say, sorry this is it, without making certain that something were happening (i.e. therapy), he should be able to make that happen at least!  If there's anything I can do, please let me know. 

[colenliam]

hi,
Just thought I would post and let you know how our apt went today.
The doctor we had was really nice and seemed really good.  He brought up the swallowing disfuntion and GER but doesn't believe their is a problem because ds had great weight gain, and his lungs are clear.  Even though he is very nasel, doc said it is more just allergies as dp has allergies to everything.
He said what is causing the spitting up and all is the valve at the top of the stomach, which closes on adults is pretty filmsy on babies and some more than others will take time to develope.
Doc, says when lo is crawling and walking around more the spitting up should stop.
I actually feel pretty at ease with his information so I think it is a good sign.

Karen,
Im sorry you are going though all of that.  sometimes docs really suck, unless you can find one that truely cares.  For some reason its hard to find.
But I just wanted to Give u a hug(although I know you need moe but its a start)

[Debonair]

  Oh Karen.

Please call Bupa we went through all this, and it is the only way to get the NHS to listen. As your DD has a problem whatever it maybe. I am soooo for you.

Let us know how you get on.

Last minute thought one thing we did was take our DS on holiday for a week, out of our environment this is when we turned the corner.......

1) he felt secure mummy and daddy just giving him 110% attention we stayed in a little shallet in the middle of nowhere. I as my father put it nursed him like a little newborn. To build our trust back.