Feeding Aversions

[Anonymous]

Hey everyone! I haven’t posted in awhile but wanted to post since Addy’s feeding aversions are finally over with and have been for several months. This is for those new mommies out there that do not know why their baby will not eat and are so upset, concerned, confused and tired of hearing doctors say, “Its no big deal, she is not losing weight and even gaining from month to month.” That is the situation we were in when Addy was 4 months old and stopped eating. She was taking in 15-25 oz per day….usually 15 oz max. That was also with me waking her in the middle of the night and dream feeding her 6 oz. Doctors would not listen to me that there was a problem. Addy had mucousy stools, a rash, persistent nasal congestion, gas, etc. Finally a Ped. GI said she needs to be on Neocate. Immediatley Addy’s intake increased and within 2 months her other symptoms cleared up. She was and is on Neocate ONLY. It was our life saver! Addy was then diagnosed with Food Protein Induced Entercolitis Syndrome (FPIES). She will continue to be on Neocate only til she is 2 and then we will do a food trial to see if she can process protein. I would be happy talk with anyone about our experience or if you just need someone to vent to.. tracy t williams @ gmail .com (without the spaces). I remember how badly I needed help when Addy was going through the worst part of this. I hope all you little ones get better soon!

[Anonymous]

hey there-
just wondering how they diagnosed her with that?
and what were the symptoms?

[Anonymous]

Hi Tracy

I am so glad that you have a diagnosis – it is hard sometimes to go by without it. Sorry to hear that it is FPIES though. Matthew was tested a while back before they went for the tube – unfortunately for us, although we know the diagnosis is reflux, it has created a severe feeding aversion, volume limitation and delay in oral skills.

I just wanted to know if you are doing anything for oral skills, given that she is only taking Neocate, from either a bottle i assume or a cup? I am just wondering because one of the things we should have done when Matthew was not eating anything other than some formula through the bottle is do some oral exercises and keep his oral skills… now we have to work extra hard to get him to accept some exercises that will help later on with feeding

[Anonymous]

They basically diagnosed her with FPIES after ruling out everything else. She had an extensive food allergy testing (RAST and skin) and it came back negative for everything…even Milk!!! We had thought beforehand that it was a definite milk/soy allergy. But when she could not tolerate rice, orange veggies, etc…..any food of any kind besides neocate, we knew it was a larger problem. Her allergist actually diagnosed her with FPIES. It was nice just having a name for what was wrong with my child and knowing she would most likely outgrow it! 🙂

Her symptoms were: rash, mucous in stools, reflux, occasional bloody stools, perstistent nasal congestion, refusal of formula, projectlile vomiting…etc…I do not know if all of these symptoms were just concerning FPIES or if her system was all out of wack and many other things were bothering her.

She is only taking Neocate from a bottle and water from a sippy cup and regular cup now. We are not doing any oral exercises but I would love to hear what you are doing with Matthew. If you can explain them, that would be great! We go back to the allergist next month for her 1 year check up and he may mention going to a speech therapist or something bc he said something about keeping up her oral skills at her 9 month check up if she did not tolerate the rice cereal at 9 months (which she didn’t). And since now we have decided to keep her only on Neocate until 2 years, he may want us to do something else.

Thanks for all your support! Good luck with your little ones!

[Anonymous]

Tracy

Yes, my understanding is that FPIES is really hard to diagnose. What we did for Matthew was also some kind of testing to see how he reacted to different proteins – don’t ask me – i think it took a month to get results. Sometimes, the patch testing works… but i understand that 2 signs of it are constant vomitting adn constant diarrhea. We never had the loose stools…. we were just ruling everything out (my ped at the time did all the tests endo, biopsies, blood, metabolic, protein tests, brain scan the same day – he was awesome).

I would be happy to share with you everything we are doing with Matthew. I am going to email you next week if that is OK… trying to finalise everything for him to go to a feeding clinic and switching therapists, so it is a bit crazy around here. I will know a lot more about this when i get back from the feeding program but one thing i have learned is – they need to learn the skills… so if they are not eating what they are supposed to, you still need to teach them to lateralize tongue, to move tongue back and forth, to bite and to chew… it is a wonderful idea to see a speech therapist – there are so many stuff that you can look at – we use a NUK brush (we use this to stimulate the different muscles in the mouth), a Z-vibe – it is similar to teh NUK brush but vibrates and has tons of different tips to also allow for different textures (we are not really using it yet as he does nto tolerate it), toothetes (to massage his gums, some are flavored… tis stimulates swallowing too and the production of saliva), chewy tubes (these are used to teach them to chew)… i am giving you this list so that you can look some of this stuff up while you wait for your checkup… also, try to get her to drink from a straw cup (because it is good for lip closure)…as they grow a bit older, you can do bubbles and whistles etc.

Hope this helps… i learned a good lesson with Matthew… some of these babies need help with their oral skills

I will email you – glad that you have a plan re the Neocate…

matthewmama2006-12-14 20:35:22

[Anonymous]

Thank you so much! I appreciate any information I can get…this is all so confusing at times. I forgot to mention, we just started giving Addy small pieces of ice (Sonic ice-you can buy it in a bag from Sonic). She loves it and it gives her practice with swallowing and chewing…she doesn’t just let it melt in her mouth which I was glad!

I am definitely going to ask the doc in January about some oral exercises or going to a speech therapist. Thanks so much and I would love it if you had a chance to email me next week!

(I just realized next week is the week before Christmas…where did the time go?!! So if it takes you a few weeks to be able to email me, no rush…I totally understand everything is hectic right now! )

addysmommy2006-12-17 17:51:34

[Anonymous]

Glad to help – this week will be fine… we are done with all of Matthew’s evals right now and tests!! YEAH!! I have a ton of suggestions…. i am going to include a couple of people here that also have great ideas all of the time.

[Anonymous]

Thank you!!!

[Anonymous]

Here are some good websites to look into stuff that i was discussing

http://www.specialkidszone.com/Product_Level2.asp?SubCategor yID=98

They have a book called Lip Prints – i have a copy – if you want it PM me your address… it is OK, not great but has some good ideas… i hae already read it and we do a ton wiht Matthew anyway (but I am in Spain for a couple of weeks, so will take some time to reach you)

http://beyondplay.com/CATALOG/ORA1.HTM

http://www.theraproducts.com/index.php?main_page=index&c Path=6165&zenid=64393791f320981658f65d238be0b123

if you get the speech pathologist, they will probably bring one of these catalogs and ask you to get some stuff…

[Anonymous]

Thank you so much!

[Anonymous]

So glad to hear that you got a diagnosis and that her feeding aversions are over. I’m sure that Thais sent you some great information. Hailey’s oral motor skills were also behind from her feeding aversions, but they improved a lot with therapy. Now her oral motor skills are age appropriate, but her feeding itself is still very problematic.

[Anonymous]

Tracy – i sent it

Lori – i have not sent Tracy and email yet… will copy you and probably Heather because we all got the therapy (or are getting it for feeding) and maybe we can get something good together… now i cannot promise that is going to happen before teh new year… still have to pack!!

[Anonymous]

Oh, Thanks again….wow, you are so helpful! Addy and I really appreciate it!

[Anonymous]

That was so encouraging to read! Thanks for posting this!

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