St Mary’s feeding clinic

[Anonymous]

I know that not many of you have kids with aversions and/or tubes but i just want to put this here in case in teh future someone is looking for info.

Went to St Mary’s yesterday – it is a special needs children’s hospital in Queens. They have a feeding program that was started by the person who was responsible for the inpatient feeding program at KKI (kennedy krieger) so their philosophy is the same.

They do an evaluation of the infant – usually there is a team of people there – NP, dietician, sometimes GI (we did not really need one because the GI there and our GI are close and do teh same things etc etc so we would continue with our GI during treatment), SLP. They do an interview and they watch Matthew eat different things and they recommend a course of action: for us it was the day program which is usually an 8-10 week program where child goes every weekday and they get therapy and therapeutic meals.

The waiting list is ONE YEAR – so if anybody ever thinks they have an issue, the sooner they get in contact with them, the better.

It is state or EI funded – i think they probably go to your insurance first and then they go through EI funds – i guess that is why the waiting list is so long.

Big program – there were several kids there – spoke to some moms who were thrilled.

Vs St Josephs – St Josephs is nicer setting… but at St Marys you stay with your baby all day (except therapies etc) and at St Josephs you leave your baby in the morning and she does not see you untl the end of the day (although you do look through mirror etc etc).

I will post about KKI on friday as we are leaving for Baltimore…

[Anonymous]

Oh sorry what i also asked about is reflux-related feeding aversions – they said what St Josephs said – that a huge percentage of the kids that do their programs are there solely because of reflux (and this number is increasing) (allergies, immature systems, hernias, bacterial infections….etc fall into that category). They said that usually all of them have terrible and painful reflux but they also said that some babies do have terrible reflux but they do not get an aversion. They know that babies are very quick to learn and they said that it may really just take a few days to make the connection between feeding and pain.

They think that unfortunately, meds do not change anything (in relation to the aversion) because they seem to be given too late – they have babies who are medicated from day 1 or 2 and still get an aversion… But they feel that the reflux needs to be controlled as soon as possible….

They get more and more reflux kids every year and as i said, these babies’ reflux is bad but they do not see a pattern (ie it is not the babies who are more sensitive, not the brighter, not the less bright, nothing really) – it just happens to some of them.

That is in relation to feeding – they also told me that the babies with aversions do a lot of the time require PT for the same reason as Matthew – they do not want to use trunk muscles, either because it hurts or they think it will hurt. They also have babies who are not able to do tummy time because of the constatnt throw up etc….

So, they think Matthew’s case is their average case

[Anonymous]

Thais,

Thanks so much for posting your clinic updates and information. I know that Bryce will probably be going through some of the same things that Matthew is someday, and it really helps me to know somewhat what to expect.

Good luck with the therapy – It sounds like you’ve made some big steps forward already. I hope everything will continue to improve.

Thanks again for the info! I really appreciate it, and I’m sure others will also.

[Anonymous]

Thanks – there is actually so much info around about feeding clinics it is crazy, but there are so many philosophies and approaches. But it is so hard to find… and if you are starting your journey, it can be hard to hear that there is a one year waiting list! so i thought people who are intimidated by other boards can still get the info here.

Don’t give up…. Bryce may not need it!! Will post about KKI tomorrow.

I need to post about a couple of SLP who have their own clinics too…. one in Denver (Dr toomey) and one in Arizona (i think… Lori help me out – Marsha Klein right?) – will do that Friday… there is a 2 year old who is totally tube-weaned (and doing well) who attended one of these only one time a week… (Camleaky in other board)

Heather – also wanted to let you know that one of those SLP has so many books out and videos about tubue feedings etc adn she is really well known. Her name is Marsha Dunn Klein (and i know that Lori prob will correct my spelling because i can never remember)… maybe you are interested…?? Do a search – some of them are at beyondplay.com – they sound really interesting and i am going to ask tomorrow at KKI whether i should read/look into something.

[Anonymous]

Thais, Thanks so much for the update. It sounds like the clinic is great! I hope that KK goes well too and that you get your first choice without too long of a wait.

Interesting about the feeding aversion! I’ve often wondered if more meds sooner would have helped Hailey. But she really wasn’t feeding properly from the first week, and by the time we even found out she had reflux, it was because the feeding aversion was in full force. Our doc always kind of made me feel like Hailey had an aversion b/c she was too sensitive, so it’s nice to know that they don’t think this is the case.

Good luck with your other appointment. I wish that we had a similar program here.

[Anonymous]

Thanks Thais,
I’ll have to look into those books/videos and the website.

I know there is a feeding clinic of some kind in Salt Lake City (near where I live). Nobody from IE has mentioned it to me though, so maybe Bryce doesn’t need it. Hopefully he doesn’t! I actually don’t think it’s an aversion that is Bryce’s problem – more just learning to eat orally despite the reflux. Either way, he needs help though. Our OT has been really good though.

[Anonymous]

Thais, you got it right! LOL, about the spelling!! I must have corrected someone elsewhere!

I love both of those programs! I’m a big fan of Marsha Dunn Klein. I love her approach for our situation, though don’t know too much about her approach to tube weaning. She has a program in AZ called “mealtime notions” and she has a website. And Toomey is so popular and well regarded in the feeding world as well.

If I had to travel out of country to attend a program I was thinking of those two.

[Anonymous]

Ha – i just think you know these things Lori!!

Heather – not to say that Bryce may need it but be aware that there is someone else in the other board who also lives in NY and whose baby is almost 2 and has been getting therapies from EI and nobody mentioned the program to her… she had to find out through the board and then when she mentioned it to the EIOD officer adn her coordinator they were like – oh yes, that is a great program… tells you how much these people know!

[Anonymous]

Thais,

Is Matthew on the waiting list, or is he in one of the programs (St. Mary’s or St Joseph’s)?

[Anonymous]

Thanks for the update Thais – keep us posted!

[Anonymous]

Good luck at KKI tomorrow. I’ll be thinking of you guys!

[Anonymous]

Christine – waiting list but we got into KKI so we are going there!!

Thanks Karen and Lori – got an update on KKI. We are thrilled.

[Anonymous]

Oh, that’s great! I was confused with all of these programs. I hope the KKI program is just what he needs.

[Author]

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