Neocate Strike with PEG tube threats

[Anonymous]

[The following is written by Carsons_MomKM (she lost her password and signed in under a new name, but now she’s all set as Carsons_MomKM ]

I will try to keep it to relevant info only….

We love our GI @ Chapel Hill and hate all other MD’s we have seen- they are MORONS

born 6 weeks early

finally after 4 months of pleading, finally dx’d with severe reflux and possible MPI – Nexium 20mg BID and Neocate

EGD X 2 to date with no change in reflux- ruled out celiac

Chronic constipation to date (Miralax everyday!)

Ear tubes at 16 months- they worked! No more ear infections…..Now we have chronic tonsillitis. Every 3 weeks since March!

ENT refuses adenotonsillectomy-seeking referral to Chapel Hill ENT for 2x opinion

Diagnosed with FTT at 16 months ( he’s been about 20 pounds for 9 months due to all of the ear/throat infections according to Chapel Hill MD’s) I just fired our latest pediatrician on Monday…..

On our last visit to Chapel Hill to see the GI we were told they were less concerned about reflux and more with weight. They put him on periactin and Duocal. Currently he is on a Neocate STRIKE> No bottle in 2 weeks. The Dietician wants him on 1100 calories per day and if no significant weight gain when we go back August 19 then he gets a PEG tube. I am heart broken. It is impossible to get a kid who has a chronic sore throat to eat that much-even with soy milk and duocal and everything else I am cramming in his mouth.

To make matters worse, he is currently on day 6 of another Augmentin round with not a lot of improvement. It took 3 different MD’s to finally RX an antibiotic. Even after pleading about the feeding issues, FTT, and PEG tube.

We need help fast! If anyone has any ideas, please send them my way. In advance, I am truly grateful for any help you may be able to offer.

hellbennt2009-07-30 10:15:44

[Anonymous]

I am sorry that your drs have been terrible. I have fired 2 pediatricians and would have just fired our ped Gi if he had not left. We wasted years listening to people tell us that he was fine and he really wasn’t. We also avoided a feeding tube for almost 4 years but right before he turned 3 years old we gave in and did it. For Isaac it was the right choice. He really needed it and it has changed his life. It really was not as bad as I thought it would be and I don’t have to be stressed all of the time bc he won’t eat. Sure we have issues with it but for us the benefits outweighed the issues by far. Please don’t think that I am at all saying that you should go that route too but rather I just am telling how it went for Isaac.

He also has large tonsils. We are seeing his ENT tomorrow after having a scan done of them and we have already been told that the scan showed that they were large. The problem is that he has a ng tube and the large tonsils are causing bleeding with tube insertion.

Do you have the vanilla flavor packets for neocate? That may or may not help.

[Anonymous]

How old is your son now? Have they figured out the source of the tonsillitus? My son has had recurrent tonsillitus every 4 to 6 weeks since Jan. Source unidentified. I just took him to an allergist and he is think a combo of the reflux plus a Motrin issue or a food allergy. We know it is not bacterial and he does not think it is viral. Said that would be very rare. What is he on for meds?

[Anonymous]

And PS… I totally understand what you are staying about him not wanting to drink with a sore throat. We usually end up with IV fluids each time. My saving grace is that I have a little more time between episodes than you do so I pack on the calories while I can.

[Anonymous]

I am sorry to read about your sweet baby struggles. Your story is very similar to mine, so i would share with you what helped resolved some of our issues.

First of, it sounds like your child might have yeast overgrowth issues, very likely in his throat and esophagus (constant ear infections, soar throat), but also in his gut. A poo culture might be helpful Kendra had many ear infections, and after many rounds of antibiotics we ended on ear tubes. All the antibiotics use gave her an yeast overgrowth problem, which we battled with potent hypoallergenic probiotics (which she still gets up to this date), digestive enzymes, natural stuff and a couple of rounds of Diflucan.

Also i learned the hard way that reflux is a symptom that something is wrong and the real problem needs to be found. For us it was food allergies and yeast. Kendra was tested for celiac and it was negative, however we went on a very stricted elimination diet and found out Wheat (a long with many others foods was making her sick). Kendra did not tolerate Neocate very well and i assumed it was the Corn Syrup in the formula. Kendra had a peg, then we switch to a Button. Kendra turned the coner after we hired a dietitician who has experience working with kids with severe food allergies. I told her the foods Kendra could have and she had a menu worked out for us in 10 days. We then use the new menu and switched her to a Blenderized diet. We gave her the food through the tube. I bought a potent blender called Vitamix, mix everything together and gave her food servings according to what she tolerated (she used to throw up several times a day since 3 weeks old until about 2.3 years old). After 3 months on this special diet (plus her probiotics and digestive enzymes) Kendra’s throwing up issues was slowy going away and we were not at the ped office every week anymore.

I hope what i shared help you help your little one. If he doesn’t want the Neoacte, he might be reacting to it. You might want to consider a diet change to some hypoallergenic foods like, Amaranth, Teff, Buckwheat, etc. These don’t taste very good by themselves, so i add agave nectar, and blend them with fruits like, berries.

Good luck!

[Anonymous]

UPDATE and questions answered…

Carson saw the new family practice MD today and he said his tonsills are overly large (3+ out of 5). 3 months ago when the ST asked our ENT about his he said they were normal size?????? Either way, with all of the infection, they need to come out according to the new MD. He said we wold have a bear of a time getting someone to do it though. He has lost 5 ounces since Monday and is now an even 20 lbs. I am waiting on a callback from the GI. I feel like when she hears what we are going through and the fact he has lost weight when he was given 5 weeks to gain, she may expedite a referral to Chapel Hill ENT’s for removal????? Who knows at this point.

He changed his meds from Augmentin to Cefzil for different bacteria coverage since he hasn’t gotten any better since Thursday a week ago.

Now to answer the questions.

Carson is on Nexium 20 mg BID, Periactin 3ml TID, and Miralax 1T QDay.

He is almost 18 months old and was 6 weeks early due to PIH, born via C- section.

I know for a fact his tonsillitis is not b/c of reflux- he just has a 2nd EGD 2 weeks ago and that was one of the things they were looking for. No ulceration or inflammation. I love Nexium!!!!! All biopsies were clear as well.

They do not want to do allergy testing until he is a bit older. He has been on Neocate for 9 months for suspected milk allergy/intollerance and it was a God send! Unless you can become allergic to it- thats not it! He never slept more than 3 hours at one time until the Neocate.

We have tried every flavor of Neocate and added everything you can think of ( maple syrup, vanilla, etc.) We have even tried choc and vanilla soy and rice milk. He is just on a full blown bottle strike and we don’t have the luxury of this being an option. He is also refusing a lot of solids and anything warmer than room temp. That leaves gummy bears and Clif kids cereal bars. I am about to pull out my hair.

I have thought about the yeast issue but the previous peds discounted it. I will ask GI about it when she calls. Thanks Leo!

The only reason I am avoiding the tube is b/c Carson is a very active child- we spend 6-8 hours outside everyday and he is a true boy- stays dirty all the time- loves anything with water and stays in our pool most of the time. I was a nurse for 6 years and I know what kind of problems this much dirt and water can cause with a PEG. I just hate it for him but its looking like we don’t have any other choice at this point. I keep thinking if the MD’s had listened in the beginning, we wouldn’t be here in this position now- and it makes me mad as h**L. I guess I just need to move past this hu? It is hard when you know, from an RN stand point, what needs to be done but can’t make an MD see it!

I agree with you Leo, I think there is an underlying issue that has not been resolved but I am lost as to where to go next. Carson is so sick of MD’s to the point if we go to a restaurant with paper on the table, he thinks they are going to look in his ears or throat and starts to cry- it breaks my heart.

Thank you Both for all of your help. This place was my saving grace the first 9 months of his life!

I am open to any suggestions……

[Anonymous]

I know what you mean about thinking if the drs had just listened from the beginning. Hugs!

[Anonymous]

not much to add, but did want to say, that when we had Carter’s tonsils and adenoids removed, the eating was so much more comfortable for him and he took off like a rocket. He was under 2 when he had his done and so was my other son under 2, so just push for the ENT referral and if you find the right one, they will do it.

Hang in there!!!!!

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