Hoping for a g-tube
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Anonymous
| Hi, my son is 18 months old and not 20lb quite yet. He fits the infantile anorexia profile to a "T". He is much more interested in everything else going on and doesn't care to eat much or drink much. He takes no more than 4oz from a cup per day no matter what I put in there. I can't do pediasure, smoothies etc because of this. (He still nurses 4-5 times per/day but my supply is very small. I am still nursing out of necessity!) Hi is active, inquisitive, has great motor skills, socially normal and is completely developmentally on target in every other way. The eating problem is not new, from a very young age there have been difficulties. I could only get him to nurse in a dark quiet room when falling asleep or first waking up from about age 6 months. He refused to eat baby food or be fed with a spoon. He still refuses to be fed with a spoon. My best luck is using my fingers and putting the food in his mouth. He can pick up food, use a spoon, and handle advanced textures because I have seen him do it before, but choses not to. He is interested in touching and exploring the food and sometimes eats a few bites (that's how I know he can do it!) but doesn't take in adequate nutrition by a long shot. He has been worked up by a ped GI and been seen at Children's. I have not found the method that has been suggested at Children's helpful in our situation. I used to think of a G-tube as a last resort, but now am hoping for one! It would give me peace of mind that my child is receiving the nutrition that he needs to grow and develop to his full potential until we are in a place where he can get adequate nutrition from oral feeding. Anyone else in a similar situation? Any g-tube moms out there? I am praying KKI will call back early next week. |
Anonymous
| Sometimes feeding tube has a reverse effect of making the child more dependent on it, thus squelching his ability to want to eat at all. I had written a post on another message referencing http://tubefedkids.ning.com/ . If you choose to have a g-tube, make sure you have a plan in place on how to wean him. For us, it was not as easy and was the most difficult thing with which we had to deal. The experience might not be the same for other parents. |
Anonymous
| 20 lbs at 18 months is not grounds for a gtube. |
Anonymous
| I so know how you feel. My son is now 9 and there are days I still have feeding tube envy. No advice, just wanted to let you know you are not alone. Fwiw, my son weighed 17 pounds at 30 months. |
Anonymous
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I found the approach and docs at Children's really not that helpful and offered nothing new that I wasnt doing already. But please don't go with KKI. Their approach to feeding is barbaric and their GI's are very old school. Please call one of the GI docs at Georgetown. You can usually be seen pretty quickly.
Having said that, my kid sounds a lot like yours. He had his G-tube put in at 18 months, and within about 2 months, he was eating practically nothing by mouth. Now, a year later, we're struggling to get him to eat again, even if little bits. Also, for a lot of kids, a g-tube will increase vomiting, which we see a fair amount of. I'm glad our child got the tube because of the amazing difference we saw in our child with adequate nutrition, but it certainly has down sides. |
Anonymous
| What does KKI do that is barbaric? |
Anonymous
| Thank you for your replies. It is nice to know that I am not alone in having these issues. To be exact, he's 19lb and 11oz. I realize that there are smaller children, and that he is not on the brink of death, but the point is that he does not receive the nutrition that he needs for optimal growth. I do appreciate knowing the difficulties or problems and plan to look through the site that was linked. Could you share the name of the doctor at Georgetown? What is the set-up there. Like any mother, I want what is best and would like to know about the different options out there. To the poster who had a very negative experience with the tube, how is your child with eating now? To the moms with older ones, have they grown out of it to some extent? Will they eat lunch at school? |
Anonymous
I am the mom who had the negative experience with the tube. Unfortunately, through my own hardship with trying to wean my child off the tube, I found many other parents with similar difficulties. They, too, had children who either had kids who had some underlining problems that eventually resolved, or had children who for one reason or another never wanted to eat. For us, the tube became a nemesis, as we saw how our children went from difficult eaters to virtually no eating at all. Nothing really worked for me. We went through multiple therapists, GI doctors, neurologists, KKI, Children's, Georgetown.... all futile efforts. No one wanted to remove my son off the tube because he forgot how to eat and be hungry. We came up with our own weaning plan, and monitored my son very closely for the next few months. He was taking very little but enough to stay hydrated. He had lost some weight, but then the lost eventually plateau out. It wasn't until 6 months later until we noticed any kind of weight increase. We had to re-teach him what hunger felt like and what chewing/eating were, as we truly believed that he became so dependent on the tube that he lost all impetus to eat/drink. I took some time off of work, and did extensive research on ways to stimulate the oral muscles. My motivation was to never see the feeding tube again, and that kept me sane and patient through the hard times. Fast forward two years and my son is now thriving. He grew from 1% to 35% in weight. He does not have a large selection of food that he eats, but whatever he is comfortable with he can chow it down. Before you choose the feeding tube, please make sure you have exhausted everything else, and be sure to have a weaning plan in place for the tube.. |
Anonymous
Exactly - I have to laugh at that post. KKI and Johns Hopkins have done for us what no hospital or Doctor in the Washington DC area could; not sibley (where she was born, ill equipped for special needs), not Georgetown (great care, compassionate and caring doctors, but not enough thinking outside of the box), and certainly not Childrens (useless - don't return calls when they promised to do so, nursing staff and doctors that seemingly knew less than us throughout multiple visits across multiple disciplines). He's no longer at KKI, but if you can track down a doctor named Dr. Anil Darbari, he would be worth a shot. He worked at Hopkins, and was the head of GI at KKI. He did a number of studies on our daughter, and was the one that ultimately performed the GI tube surgery. BTW - I will note, that GI tubes are not without their risks, and special care needs. Please research that before making your final decision. For us it was absolutely worth it. I mean, aside from the wonders it's done for keeping our little girl fed, it's even been a blessing in so far as enabling us to administer medicine while she sleeps. |
Anonymous
I have met the most compassionate doctors at KKI. |
Anonymous
|
http://health.groups.yahoo.com/group/InfantileAnorexiaForum-OneBiteAtATime/
Have you joined this yahoo group? My child has infantile anorexia. We see Dr. Chatoor and we have found it very helpful. I'm pretty sure my child was 0 percent weight at 15 months and 50 percent height. The method with Dr. Chatoor worked, he got up to 10 percent weight. Then he had his adenoids removed and he is up to 25 percent weight. I would also see an ENT and get an xray to see if his tonsils and or adenoids are enlarged. They haven't done a study on it, but I posted in the above forum the amazing results of removing adenoids for my child. Who is your doctor at Childrens? What exactly are you doing? Post in the above forum, say what you are doing and ask for help from the members. Most of the members have a child with IA, but some have one with another eating disorder. |
Anonymous
| I'm the one who called KKI barbaric- To clarify, I was referring to the methods of their feeding clinic, which we had the misfortune of experiencing, not their GI doctors, which I'm sure are more than competent. |
Anonymous
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OP here, just got a call from KKI and all services were covered by insurance except the behavioral psychologist which was $500 per visit. I asked if we could do the docs, nutritionists, and speech or OT that were covered but not the behavioral psychology. We can not. It is a "complete system" and you have to participate in all elements. I understand that, but when you are expecting frequent visits, it is just too much ($590/visit including the other co-pays). I guess that I don't need to worry about the controversy about KKI's feeding program because we can't afford it!
I cant find much about Georgetown's program, could someone please post more info? Names, contact etc... BTW why is KKI's feeding program barbaric pp? Why is ABA controversial? Just heard of it for the first time on another thread on this forum. Thanks! |
Anonymous
When we signed up for Gtown over a year ago there was a 2 month wait list. They put us on the list right away when we called, but when they called back in a few weeks with an appointment, we needed to have our pediatrician send them a referral for them to hold the appointment. Here is the link to the page (click on the appointments tab to get the direct dial): http://www.georgetownpsychiatry.org/body_dept_home.cfm?id=1389 We met with Sheila Skinner if I recall correctly who was great but she didn't think DD was a candidate for feeding therapy (DD just starting self-feeding when we had the appointment) so I can't tell you anything more. |
Anonymous
| Thank you pp I called today. |