Posted By Posting
Apr 11, 2009
mommato3
Feeding Team Appointment
Good morning! I hope everyone has a great Easter weekend. We had our appointment with the feeding team in Cincinnati this weekend. It was at 8:30 AM and they wanted him to be hungry. Well for some reason he is NEVER hungry in the morning. He has to be totally slept fed this bottle. WEll they couldn't believe how happy he was to not have eaten. An occuptational therapist, speech therapist, nutritionist, a couple of nurses and a doc all watched me feed him. They couldn't believe I had to do everything I do to get him fed. He also gags, etc. on his bottle. It takes me 11/2 -2 hours to get a bottle in him. He's never hungry. They said they see kids like this all the time but the ones that are as bad as him are on at least partial tube feedings. In fact the nurse suggested a NG to give me a break. I said absolutely not at least until we do all these tests and TRY to find out what's going on. I haven't worked this hard just to give up and "give myself a break" I know exactly how many oz it takes in a day for him to gain weight. I stay up until I get it in him. I have actually stayed up (not gone to bed) to 3 AM to get his 21 oz (24 cal. formula) in him several times. He sleep feeds most of this. He is VERY uncoordinated with his suck, swallow. Once the doctor examined him yesterday she said "Oh, honey. I can't believe what a great job you've done with him. Please don't consider the tube just yet. Give me a couple of weeks until these tests are over and I'll do everything I can to help you. You've kept him going this long and obviously worked very hard. Get some family to help you out with your other kids and I promise we'll get him eating better for you. If I saw him a couple months ago I would have prob. put him on a tube but just hang in there now." Well that made me feel good for someone to acknowledge everything I've done. I am so tired but very determined. The genetecist said he does have Pierre Robin without the cleft just a high arch palate instead which is why he is so uncoordinated which is a big part of the problem along with the reflux. Here are our test dates. April 15th-MRI April 16th-swallow study, impedance probe inserted, spend the night at hospital April 20th-FEES study (fiberoptic, endoscopic evaluation of swallow April 21 pulmonologist appointment April 22-sleep study April 29-Triple scope: EGD, larangoscopy, bronchoscopy, and lung wash
Apr 11, 2009
mommato3
I forgot to add that my son is still 48th percentile for his weight. Granted he was close to 90th but why in the world would I put him on a tube just yet. We don't even know how he's going to do with solids. Although, I'm scared he is just going to gag. I guess I thought it was NUTS that she suggested it after all that's why we're going there-for intervention. Now after we've done the tests and if he becomes FTT then that's a different story. I almost felt like the nurse acted like we're another number and go ahead and tube feed-it's no big deal. I thought it was their job to keep kids oral if at all possible. Well at least the doc acted like she was going to help. Pray we get some answers for our little guy during these tests. I'm getting very nervous about putting him through all this. Thanks!
Apr 13, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Hi Tracy - good for you! You must be working so hard. I am glad you are finally meeting up with some people who undrestand what is going on and are encouraging you. Good luck with the other tests. Understand that you are nervous but the more information you have the more answers you will be able to get. Susie
Apr 13, 2009
mommato3
Thanks for the encouragement Susie!! It is nice to finally have someone understand what is going on and that just because he looks happy doesn't mean he doesn't have problems. Looks can be deceiving at times. I just hope they try to hurry and figure out some things to help and not just say "put him on a tube" in the meantime. It worries me that they suggested it. As we all know and you've advised me too that tube feeding isn't usually temporary and would prob. make his aversions, gagging, decreased appetite worse. It will be hard to keep him oral after that I'm afraid. Is Charlie's endo. appointment today? When do you go to the orthodontist? Let me know what they say. I'm sure you're right his slow growth is prob. GI related. BTW-she seems to think Holden's PRS characteristics aren't genetic right now and we decided not to do further testing to check for other syndromes. She just told us to watch his vision and hearing periodically.
Apr 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I wouldn't take the word of the Geneticist that there is not a cleft present. I'd go ahead and ask them to add an Upper GI just to make sure. You don't want any surprises down the road.

It sounds like they are being really pro-active which is just fantastic. I'd be careful doing there feeding program just because I've heard from other Mom's who have said they do force feeding. To the point that they held her child's hands down and made him take the spoon. Now, I do alot of behavioral stuff with Jedd but even I would not go that far to get him to take the spoon.

I just can't believe someone would suggest a feeding tube, and NG at that, just to give you a break. Believe me when I say, getting a feeding tube in the nose will only make the issues 100X's worse. Now, getting a G tube wouldn't be as bad but an NG no way!!!!!

Glad they are letting you wait because that percentile isn't that bad. I hope all the tests go well for you, that really is wonderful to hear that they have gone ahead and scheduled them for you. Most of us have to fight to get that done.

Apr 14, 2009
mommato3
Thanks Jedd's mommy! I definetely don't won't to do force feeding. The way it works though is that b/c my son's probs are not all GI (although I think most are) he has to see the feeding team. They are the ones that ordered the complete workup and treat him. I guess as far as behavioral goes though after we get all the medical issues worked out we will try somewhere else if needed. He is already in our state's early intervention and gets nutrition, speech therapy, and physical therapy. I am very glad they take me seriously and are being proactive, but I have had to fight to get him there. It was a fight to get him in early intervention, get referrals to specialists. Finally our feeding specialist at our local hospital told my pedi to refer us to Cincy for GI. When we saw the doc for GI they said we needed to be at the feeding team for a complete workup. It is nice to have these big hospitals take you seriously. I think I have read that you had great experiences at Columbus with Jedd's testing. That is also not very far from here, further than Cincy though. Thanks so much. Also we did have a upper GI and an ENT appointment to rule out the cleft, but I think the scope should show anything they missed. The ENT is going to scope his airways at the same time (Bronchoscopy and Larangoscopy).
Apr 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Columbus was awesome. They only have a 2 week feeding program so kids need to be almost all the way there..KWIM It's really just for finishing off of tube weaning. We were not good candidates while we were there although I've heard it's an excellent program. Maybe in the future they will expand. I know they are doing ALOT of construction on the hospital so maybe that's in the works. We didn't hear anything about that while there though. Just wishful thinking...LOL
Apr 14, 2009
ttrumbo
Mommato3 - not sure if you're still watching this posting. I haven't caught your full story but it sounds similar to mine. My 5 month old daughter only drinks 10-14 oz a day. She has a reflux diagnosis but they are saying her eating issues are behavioral. Yeah, if it hurt when I drank I think I'd not take bottles as much too. What are your tricks to get your son to drink?
Apr 14, 2009
mommato3
hey ttrumbo. I wish I had some tricks. I have found my son to eat much better when his feeds are spaced very far apart. I also sleep feed him. His bottles are timed around his naps. When he goes to sleep I pop the bottle in his mouth and he eats the rest of the bottle although very slowly. We also have his formula at 26 calories per oz. His nutritionist says that she would rather get the calories in him through his formula and we'll start solids closer to 6 months. We are starting Erythromicin after his probe on Thurs. I see you're on that as well. Have you noticed any side effects from it? My son is also on Elecare which has done wonders. I really would give alimentum a try. The ready to feed tastes better. I would start out very slowly like 1/2 oz at a time mixing it with the soy formula. Over a two week time period I would try to wean her to the alimentum. If she had problems with milk there is a a likely chance she will have problems with soy. In my opinion it is worth a shot. Alimentum is also much easier for their tummy to digest. We were on soy for a long time and my son was fussy but after about 2 months on it, he had blood in his stools. We went to alimentum. I went straight to Alimentum no slow transition. The first day he took very little. After a couple of days he was taking it very well. He realized it wan't hurting his tummy anymore. Well after a month, it stopped working and we went to the next step up-Elecare. It will take about 2 weeks of being on a new formula full time for you to see the full benefits and if it is going to work. Then you can always go back to soy if you see no difference as there is no reason to pay for the expensive stuff if you don't have too. But I would give it a good shot. I also think the probe is a good idea. i'll let you know how ours turns out. I'm afraid my guy is going to jerk it out. We are also having a scope done. This will show if there is any damage in his esophagus. If there is, then we know his med dosage isn't working. If there is no damage, then the meds are working and his stuff is prob. behavioral. For a scope they do have to go under anesthesia but it is supposedly VERY useful information. I don't know if I've helped but you're right our kiddos are the same age and they both have very little intake. What all other meds are you on? What have you tried? Have you had any other tests done?
Apr 15, 2009
ttrumbo
Hi mommato3. I'm sorry you're going through this as well. Isn't it stressful? I feel like my entire life revolves around her feedings. I have to go to work 2 days a week and I hate leaving her with the daycare b/c I know they won't try as hard as I will. Luckily Anna has continued to gain weight even though she isn't taking much formula. We feed her baby food 3-4 times a day which is why I think she's gaining. She's had baby food since 3 months due to her slow weight gain. I think I'll try phasing in the Alimentum next week. I'm so nervous to change the formula since she's so not into drinking. We haven't had any side effects with the Erythromicin at all. Did your doctor tell you to stop the meds for the PH Probe? They told me yesterday to keep her on them. Anna is also on Prevacid 15 mg. Did your doctor say it was okay to give the Erythromicin and Prevacid at the same time? I've been doing that and I'm not sure if it messes up the Prevacid. We haven't done any testing yet. I just scheduled her upper GI for next Thursday and I'm waiting for them to call to schedule the PH Probe. It shouldn't be so hard for these little babies!
Apr 15, 2009
mommato3
We're to do ours on meds too. I have never heard of doing it on meds before so I'm glad someone else's doc is doing the same thing. I don't have the directions for the Erythromicin yet they are waiting until after the probe before giving this to him. Have you tried upping the calories in the formula instead of doing so much baby food. The higher calorie formula should help her gain weight as well as get the nutrients she needs from the formula? I have recipes for 22, 24, and 26 calories per oz formula but of course talk to the pedi about that first. Holden is on 30 mg of Prevacid split into 2 doses. That is a lot though but it has helped.
Apr 15, 2009
ttrumbo
Our GI doctor said to just put in an extra half scoop whenever making a 4 oz bottle. I've been doing that. Not sure if it is enough.
Check with your
doctor first!