Fussy Feeders - Dysphagia - a possibilty other than reflux

[xxxkizzixxx]

Well we saw speech therapist on thursday who wasnt much help . her answer was that DD has a bottle phobia and her instructions were not to show her a bottle whilst she is awake !

So to cut a long story short DD only managed 10oz that day! She has now got to the point that you cant even dream feed her as she wakes and fights the bottle.
So friday through to saturday she had 2 oz 

i took her to the hospital and after telling the doctors i was going to cause alot of problems for them etc etc if they didnt sort her out she is now being tube fed till we get to see somebody who actually knows what they are talking about. For the first time a doctore is actually going to do some tests  poo, wee etc and request a barium. This doctors was quite surprised that I had been left to cope with this alone for 9 months with no help from the pead etc.

So finally there may be some light at the end of the tunnel.
DD at present is at the hospital getting her tube put in AGAIN as she loves to pull it out

Will let you know how we got on when we see the doc on tuesday

Karen

[Noelle]

Good Luck Karen - glad you are getting some answers, way to stand your ground!!    Keep us posted....

[colenliam]

Hi nancy,

I have just read your post on The Swallowing dysfunction.  My ds has had problems with eating since he was born(now almost 7 months)  he has never been a big eater and has always spit up all the time(to put in mildly).  He eats better at night when he is sleepy or sleeping, and has always been very nasel.  My doctor has always treated it as a milk allergy(there are no allergys to anything on either side of family).  We went to soy milk when he was 2 months and nothing had gotten better.  I kept going back to my doctor and he still says milk allergy and didn't ever seem to want to put anytime into it.  Ds has always choked and gagged while talking bottle, i always thought it was because he was so nasel and had a hard time breathing while taking bottle.  He has been gaining weight fine though, he is over 18 lbs.  He has never been a great sleeper as well.  Yesterday i took him to a different doctor to get a second opinion.  He said he really doesn't believe it is a milk allergy and for me totry reg. formula again.  So I started that yesterday.  He also said he really can't give me an answer to my questions so has referred me to ped.  should I bring this up to the ped?  It seems like I have to fight to get to the bottom of this, I thought doc were suppose to be there to help when it really seems they don't have the time of day.  Ds is usually a pretty happy baby but it has always been a big fight to eat.  He still wakes twice a night to feed and I know it is becaus he isn't getting enough formula during the day, although getting what he needs in a 24 hour period.  He eats so well while he is sleeping??  so are the symptoms just like, Nasel(stuffiness), vomitining, I usually say spitting up but when at doc yesterday lo spit up like 5 times in the 15 mins we were there, like he usually does and doc calls it vomiting), coughing and choking during feeds and not having good sleeping habits?  If you could help me out with this it would be grestly appricated.   I know my boy is healthy cause of good weight gain but if he is in any pain or discomfort I just want to get to the bottom of this.
Thank you,
Nicole

[Mum to Ella Rose]

Oh Karen, your story breaks my heart. {{hugs}} I too say good on you for sticking to your guns!!! Please keep us posted on how you both are doing.

Nicole, I'm sure Nancy can help you but I just wanted to say I think you should definitely bring it up with your paed. Could be reflux related as well...and a lot of refluxers will over eat to try and soothe the acid down. Big hugs to you too and keep us posted.

Sharon

[Luke-n-Me]

Karen,

Your story breaks my heart too, but the bottom line is that until you get this figured out, that tube will be the best thing.  I'm really sick about the fact that no one is able to give you the help you need.  I'm glad that you've found a doctor who thinks it's awful that no one has helped you through this entire 9 months. Sounds like he has some compassion and a desire to help.  I REALLY think you need to try thickened liquids and to maybe just get your lo off the bottle.  Start trying open cups and straws with thickened liquids.  What you REALLY need is a modified, but that could be difficult for 2 reasons 1) we already discussed it will be difficult to get her to be compliant for the test because she won't take the bottle when awake and 2) it doesn't sound like any of the speech therapists there no what to do!!!!   Your lo DEFINITELY needs some oral-sensory therapy at the very least, did you mention this to the speech therapist? What was the reaction?I don't have time tonight, but I will try to find some websites about this therapy if I can and post them here for you.    Maybe try an occupational therapist???  I'm very frustrated with your story-it makes me sick as I know how frustrated you must be!

OK-Nicole, I would definitely bring this up to the ped-but, don't be surprised if he's clueless and don't be shocked if you have trouble finding a helpful therapist.  I honestly would suggest trying thickener as I've mentioned previously in this post, just to get you started.  I always try to recommend everyone following the correct protocol, but it seems that most individuals rarely get the help they need!  Your story sounds much like Karen's, so yes, I think the symptoms are all there, I really just wish I could see your lo!!!!Definitely let me know if you have more questions (or I didn't answer a question for you), I try not to give out more info than you ask because I can't remember what I've already posted and don't want to be redundant!

[colenliam]

Hi,
Thank you for your response.
So I was wondering how I should thicken his formula, with cereal?
Like would I just add rice cereal(he usually eats oatmeal cereal) to his bottles.  How much should I add and will this interfer with his other meals.  he currently is taking 1/4c cereal for breakfast and supper and 2 Tbsp of veg for lunch(although not a fan of being feed from a spoon).  I would like to try this before we go to the ped.
I have a really hard time getting my questions answered from doc, should I be pretty push about it.  I have read some web sites on this and have printed some things out, should I maybe take them with me, or do you think he/she will be affended(I'm so bad with feeling like I am making someone go out of there way)Geuss I have to get more of a backbone in order to get to the bottom of this.  Thank you for your help

[xxxkizzixxx]

Hi all

I have tried different cups , liquids , even thickened liquids etc but she just has no interest in them. She will quite happily play with the cups, bottles etc but as soon as ANYTHING goes in her mouth she puts it down.
   We are on the waiting list to see the occupational therapist but have been told its up to 2 years wait funny as its the same person who is the speech therapist ! i asked why she couldnt do it there and then but apparently thats not how its done  we have to wait our turn )
 
The speech therapist totally blanked every idea I suggested to her .... and in my opinion doesnt know what shes talking about.

So for the time being we will just leave cups etc about for her to play with and hope that she might take an interest.

One thing I have noticed in the couple of days she has been tube fed is that her solid intake has got better. Previous feeds were

1 jar baby food if lucky
15 - 20 oz peadiasure

When on the tube feed she is eating

2 big  jars food
2 fromage frais
20 peadiasure
14 water
bits of finger food through the day

Will let you know how we get on with the doc on tuesday

Thanks for the support 

xKx

[Luke-n-Me]

Okay, Nicole-the way to thicken is with a true liquid thickener like thick-it or thicken-up which is a powder that can be found at any pharmacy, you may need to ask the pharmacist to help you find it.  It's cheap and you can thicken to any consistency with it (nectar, honey or pudding).  I recommend trying nectar first and because of the age of your lo it may take him a while to become comfortable with it so give it at least 3 days before you try honey thick-if you still don't see any results-come back and ask me more questions and we'll try to problem solve!
Do NOT thicken with cereal.  It can cause lots of problems and while a dr. may even tell you to try this-DON'T!  It doesn't thicken things evenly, your lo will get some gulps that are super thick with cereal and some that are thin and runny. 

Your lo may not be a fan of being spoon fed either because the food is also too runny and he may need it thickened a bit too.  Just add a little of the powdered thickener to the food and try that.  Some of the foods are plenty thick, but things like peaches and squash are pretty thin and could be thickened.  I did this for my son for quite some time.

If you dr. won't just look into dysphagia if you've brought it up to him, then definitely go to him with the info that you've researched so that he knows how serious you are about it and he  knows that you want something done about it.  Yes, you may have to be pushy, but this is your baby and you need to do whatever you can to make things better for him.  If you have more questions, let me know!

Karen-

I'm definitely glad that she's eating better with the tube feed and definitely keep letting her play with the bottles and cups, that's the best you can do for now and just keep giving her trials of liquids in them.

As for the occupational (OT)/speech therapist (ST) situation, what do you mean that they are the same person?  This individual has separate degrees in each of these areas?  That seems a bit strange to me and almost impossible that she practices in both fields.  Is there another facility where you can seek these professional out?  I tried to look up some info online for you about oral-sensory therapy and really couldn't find anything that fabulous for you, you may want to try a search yourself and see if you come up with anything helpful to you.  Please let me know how things go with the doctor!  Good luck!



 
 

[colenliam]

thank you for your help,
I will post later to let you know how things are going.

[xxxkizzixxx]

Hi

well we saw the doc tuesday and she has booked appointment for Keely to have blood tests and also a ph test!  Finally we are going to see a doctor who knows what they are doing !!!!
Take about 8 weeks for the appointment but atleast we have one. Bloods etc should be in the next 2 weeks.
Will keep you all posted 

xKx

[Debonair]

Hi

Check for my posts my story is very similar with DS but lukily it got sorted when he was six months. I used to administer the NG tube in the end because he pulled it out so often, any questions, happy to help

Take Care

I know exactly how you feel HUGS X

[xxxkizzixxx]

Had the blood test done ..... no results yet! got the ph probe tomorrow.
Just got the appoinment through to see the doc and get the results etc ..... in MAY what a bleeping joke. That will mean we have waited over a year to try to get this sorted. How i hate these people at the moment. makes me so mad that they expect my dd to suffer a few months longer etc when they could just take 5 mins extra to sort this out.
well im not waiting that long im going to insist that they have this sorted out by next week as TUBE feeding her is not the answer! Its just more pain and upset for her everytime it comes out or has to be changed.  Rant over

karen

[Debonair]

Oh Karen.....

I could just scream at them for you. I know, I know and the tube is not the answer, I went through this all and it's not on.GO back and demand they get it sorted now. And even if they say there are other sick children... yes you know... and you feel for them... but this is your baby and I know what it's like to go through this. BE STRONG. 9 MONTHS IS CRUEL. FULLSTOP.

Here for you and you are such a good mummy for fighting for your DD. A true mummy, a good mummy, keep going I promise it will be over soon X BIG HUGS X

The other thing you can do I'm not sure if your in the Uk are you if so I'll tell you?

[xxxkizzixxx]

yes Im in the uk........ sometimes wish i wasnt lol

[Debonair]

here goes worth a try.

When my Ds was going through all this I rang Bupa and asked if they cover babies they said yes, I said even who is already diagnosed with reflux and has had bonchulitous they still said yes, I asked how much it would cost to cover my DS as at that time we hadn't had any tests and they said £20 a month. Now I don't know your financial cir!@!stances but it was the best £20 a month we have ever spent.
A) we got our son to see a specialist pead that week, tests and results the next week.
b) our doctors woke up and listened as soon as I mention the specialists name
c) the specialist had more time to listen to me and the symptoms, he trusted me, he even dismissed the DISGUSTING letter the local hospital had written which I have kept as proof of our battle, he said "forget about this and waived it in my face, he said they haven't got the time or resources to know what is wrong, but I have, start at the beggining & what a relief!",
d) he left no stone unturned  (we even had our DS tested for latex allergy),
e) we have had a stream of true proffessionals helping us on the specialists team that he had worked with for years and had hand picked himself, and they have been so, so supportive at one point our dietician rang us at 8pm to see how our DS was doing after a day of me ringing her about 5 times begging her to find a way to make our DS drink so we could take the tube out, they never stopped offering us hope.
And today things are a different story for us but that £20, WOW it was just so worth it. i think in total after one year our bill with buppa has been about £2000 that they paid for and we've paid £240. It may be more but it's worth a call if you haven't already tried.
Let me know how you get on.
Hope your not too low today, HUGS again as I said from 1 mum to another who's been through this, you really are amazing to be fighting her corner and as someone said to me once when I was too low noone else can fight thier corner you must be strong for them, your time to break down when it's all over will come, but for now take every ounce of love you have for her, and turn it into strength mental and physical, and as nature intended, protect her with all you instinct gives you, if you want answers now you fight for them now. If your partner/hubby has to be out getting food to go on the table that's what men were ment to do the HUNTER this is what mother nature intended for us mums, I think now only the lucky in a funny way get to know what true nuturing,protecting, caring and loving & ultimately bonding is really about.