Posted By Posting
Jun 01, 2004
Sara in Fairfax
*BIZZARE* but thought provoking treatment of feeding issues with SID component
My daughter was not accepted into the Kluge feeding clinic. While I was disappointed to hear that, I expected it. They don't like to take very young children, and they don't want to take children that are too skinny (ironic as it seems). Primariy they are used to tube fed children being transitioned to oral feedings, and those children tend to be older and a little better nourished. So, they can bribe and/or reward older children better, and they can use hunger as a motivator. Anyway, the intake person, Polly, was very nice on the phone and we plan to keep in touch. She suggested Periactin, which I have heard a lot about. But, this is the strange part: she said they have seen major immediate improvements in children who have high sensory issues related to feeding with *PAXIL*, which "calms the nerves" in highly sensitive children. I was really surprised to hear Kluge uses that medication in their program. Anybody hear of this or try this?????
Jun 01, 2004
Anonymous
No, but
Hi, I can't say I've ever heard of this, but this is not an area I've had to get involved in yet either as my daughter used to be very enthusiastic about eating, even if she didn't keep any of it down! Interesting idea - "calming" the nerves. But, I would have a few words of caution for you if you're considering the use of Paxil, even later on, as I do have experience with Paxil with my older daughter when she was about 6yo. Feel free to e-mail me if you want more information: wge376@hotmail.com. Terry
Jun 01, 2004
ptyler
Feeding clinics
Sara, You may be able to find another clinic that would accept your daughter. Jan Burns did an article about clinics in the Summer 2002 issue of Reflux Digest and listed serveral clinics (most on the east coast). Many inpatient programs do use a behavioral approach but others offer developmental or child-centered approachs. I have sent many children that I have seen on an outpaitient basis who have needed an inpatient program to Kennedy Krieger in Baltimore. They use a behavioral approach but do not have limits on age. The behavioral approach is not effective for all. My favorite would be New Visions in Va. It is run by Suzanne Evans Morris who is an occupational therapist. She is the guru of sensory integration and feeding disorders. Her program uses a sensory/ child-based approach to treatment. It is very expensive. Also it is not new to use anti-depressant medication with children with "highly senstive" children and since SSRIs (like Paxil)are now approved for younger children they are also being used. I personally have seen children put on anti-depressant medications and sometimes they are somewhat effective but not necessarily in relation to feeding issues. It has given them a claming effect that sometimes allows other treatments to be more effective. I personally am more wary of SSRIs as some studies have shown them to increase anxiety.
Jun 03, 2004
Elizabeth in VA
Sara
My son went to Kluge last June. I am sorry to hear your daughter was not excepted. It is an awsome program and Polly is great. That being said the program did not work for my son. He did really well while we were there but he has had so many respitory virus' he has regressed quite a bit. Polly was telling me about the Paxil too. I don't know though, I'd have to read more on it. We tried the Periactin and it worked for about a week. Have you tried the Periactin yet? if not, I would definately give it a try. Elizabeth
Jun 16, 2004
Alex
Who has had success with transitioning from tube feeding???
Does anyone have any advice for people who have had success with transitioning from being tube fed to oral feeding? My daughter is 12-months old and had first an NG tube for four months, and a g-tube for the last five months. Prior to her tube feedings, she did eat well orally...due to a cardiac condition and a severe gastric motility issue which causes unexplained cyclical vomiting and wretching (despite fundo) she simply could not ever eat enough to help her gain or even sustain her weight. Because she is fed through a j-tube (because of the severe vomiting)--she never uses her stomach and does not seem to experience true hunger. I turn the continuous drip off for 3 hours a day, which does seems to give her enough hunger to eat about half a jar of baby food or a can of Boost pudding. I know she has it in her...what ages do most people begin to see a real success in transitioning??? Any help or advice would be appreciated.
Jun 16, 2004
Anonymous
Alex
Hi Alex.....I hope transitioning to oral feeds is easy for you and your daughter. If you want your daughter to experience hunger there is a medicine that makes them hungry, it's called Periactin. You can ask your GI Dr about it.
Jun 25, 2004
Mom of a G-tube transitioner
Re; Transitioning from feeding tube to oral
I just thought I might shed some light and hope on your situation as I struggled through the same. My son stopped eating due to refluz at two months old and had an ng tube for about three months before the G-tube was placed, Shane is now 5 and eating however he is facing surgery but it was a struggle to get him to eat. Shane recieved four rounds of occupational therapy before it stuck and there were periods of non treatment inbetween rounds. Trust me it is not easy but you find their favorite food and work with it, Shane was very orally definsive with certain textures and it took patients and reasurance of him not vomiting to get him to try new things but he got there. What worked for him was puffy cheetos of all things and now he eats a large variety of things. The other sugestion is if your daughter is already in Occupational therapy ask them for a cataloge re oral stimulation tools there are a lot of different things in thoes cataloges that you would never think of. On a lighter note let your daughter enjoy some home made popcicles trust me you can add all kinds of fat to a cool summer treat. feel free to contatct me if you have any questions but just remember it is a slow process and it doesn't happen over night good luck- Jen
Jun 26, 2004
Alex in Boca Raton
Jen-What is your email?
I would like to contact you to discuss your situation in greater detail...thanks!
Check with your
doctor first!