Hi there,
I am new to this site, and could use all the help I can get. I have twin boys that are 8 months old. They were diagnosed with silent reflux around 8 weeks of age. They do vomit from time to time, but their biggest symptom is food refusal. They are in approx. the 20% for weight, but I believe this is only because I force them to eat more than they want, just to get the minimum amt. for their age in. I know this is wrong and believe it is making their eating worse so I would like to stop, but then they start to lose weight and I panic. One of them was actually hospitalized and put on NG feeds for 2-3 weeks when he was 6 months because he actually became dehydrated due to refusing formula. I used to be able to sleep feed, but around 6 months they stopped eating in their sleep so that strategy is no longer available. We do go to feeding therapy, and that has helped with accepting solids (they will take a few bites of purees, but no textures), but my real problem is getting them to actually want to eat so I don't have to force. They are on prevacid and they no longer arch or fuss after feedings so I think the actual reflux is well controlled. They have had upper GIs, endoscopies with allergy testing, pH probe and have been fine. Nothing else has been found. I am trying to follow their hunger cues this next week to see if a break from the forcing helps them develop a happier attitude about food.
In the meantime, our ped GI has recommended periactin to stimulate their appetites. Do any of you have experience with it? If so, what should I expect and how soon will I see any result?
I am sorry this is such a confusing and long message. I am just so desperate and after 8 months feeling very down.
Thank you in advance for any advice you can offer,
Kristina

Kristina -- Your story is very familiar! I also feel my son's reflux is well-managed by his meds, but he still does not want to eat. Wegot him to gain weight with sleep feeding bottles and force feeding solids, but he always gagged on textures. Like you, I knew forcing was a bad idea, but no one could tell me how to keep this kid from dehydrating. We tried periactin and saw some results for awhile, but that's also when I began force feeding purees because I was determined Daniel would make the connection between the rumble in his tummy and the satisfaction of eating.

I suggest giving it a try. The biggest side affect is sleepiness, but it actually made D wakeful. :? Sorry, but I can't remember how long it took before seeing results. It's been about 14 months since we used it. I would certainly talk to their feeding therapist about when to give it, when to attempt a feed, and so on. Good luck! Let us know how it goes.

I dont have any advice, I would just like to say Welcome to the boards and I'm glad you found us. You will find a lot of support here. Thank you for joining us!

Sounds interesting. I've never heard of it, but I would LOVE to hear about your results. Noah, who is almost 8 months, refuses his bottles as well. I am also confident that we have the reflux controlled for the most part, but he just hates to eat. I feel the same way about Noah only gaining because I am so persistant and sometimes obnoxious about feeding him. I am 100% sure that if I let him eat when he acted hungry, he would fall right off his curve. Do your boys have any favorites? Noah hates just about everything. Fortunately, my little man loves yogurt, so its been our savior. There is also one type of Gerber organic oatmeal, bananas, and peaches that is completely smooth and he likes it as well.

Hi-
I just started Sarah on periactin. She has very similar symptoms. She refuses her bottle - will only take about 50cc then stops and I have to sleep feed the rest. She would go all night without eating then only take 2 oz in the morning so I set my alarm to feed her. She is very tiny ( below the 3rd %) so I feel like I need to get as much calories in her that I can. I started periactin last friday and she ate well for 1 week- there was a definite improvement in her eating the day after I started the periactin. The only problem was that we also went up on her prevacid dose at the same time. I heard that htey need to be cycled off or the affect wears off so we stopped the periactin over the weekend and then restarted on monday. I haven't really seen the same change yet that I saw the first week but she is having a tough week anyway . What dose were you put on? Sarah weighs 12 pounds and was started on 1 ml every 8 hours. Does this sound similar to your child? But anyway I think you are supposed to see the affect right away. Let me know how you do with it.
karie

Welcome to the boards! Your story sounds a lot like where we come from. Have you already checked into feeding therapy with a speech language pathologist and an occupational therapist? That can do wonders! When I looked into periactin a year or more ago, Evan's ped. refused to let us try him on it, since it has only recently started to be used for appetite stimulation and since there was still no scientific proof that it would work for that. I'd love to hear how it works for you though!

Hi there,
Thank you for your responses. The peds GI is calling it in today so I am not sure of the dose yet. I really, really hope this works. If not, I think as a last resort I might travel with them back East to one of those day-treatment feeding programs for 4-6 weeks. It would be a major hassle, my DH wouldn't be able to come, and who knows how much insurance would cover, but I don't know what else to do. We do go to feeding therapy with an OT once a week and I feel like she is giving me great advice to help with learning to swallow solids and start finger foods, but I don't feel like we are making any progress with their dislike of eating or lack of appetite. With both of them being bad eaters I spend pretty much every waking minute either trying to get them to eat, or worrying about how much they haven't had to eat.
Thanks again and I will let you know what happens,
Kristina

Let me know how it goes. I live in california and I haven't found any day programs. You mentioned going eat for treatment. Do you know of a good feeding program? I feel the same way you do. My whole day revloves around her eating. Worrying about her eating and getting her to eat. We can't go ou for more than an hour because she has to be home to feed her.
karie

Karie,
I have just gotten off the phone with St. Josephs in NJ and Kennedy Krieger in MD. I am only at the point of getting information. I know that Kennedy Krieger has a 4 month waiting list. I am just going to start doing everything to get ready now so if they don't improve by the time I get through all the insurance approvals, referrals, and everything else at least we will be ready. I really hope it doesn't come to that, but I can't imagine continuing on like this much longer.
Take care,
Kristina

I would like to say hi and welcome to the board. I am so sorry that your little ones are having so many problems. I so have to agree that your sons sound like the reflux is under control at this time. The feeding issues can continue on even after the reflux is better due to the child corolating pain with eating. My son had difficulties with food at one point and was placed on periactin to help stimulate eating. For him it worked very well and helped increase his appetite. I am sorry dont remember how long it took for the med to take affect with him. I do hope that it helps and makes a difference for them.


Melanie