Hey!

[Anonymous]

I have 2 sons one is 7 months born at 30 weeks and a 19 month old born at 34 weeks. they are almost 1 year apart =). Jacob my 19 month old has reflux, MSPI and gastroparesis. He had an upper Gi last month which still showed reflux. he currently take prevacid, bethanecol and periactin. Hes currently 22lbs. His symptoms are pretty much under control however Gunner my 7 month is suffering badly at the moment. He only spits up through his nose never out of his mouth. He has done this since the NICU, they would have to change out the CPAP contantly. We are currently seeing our 2nd GI for him bc the first was doing absolutly nothing for him. He has had 2 swallow studies both show aspiration and nasopharnygeal reflux. We have our 3rd swallow study the 20 on this month. he is currently on prevacid,zantac, bethanacol,periactin,carafate, and levsin. Hes in pain and i cant take it but the drs are doing nothing for him. We are seeing craniofacial and ent to rule out cleft palette and velopharngyeal insufficieny and anything else that could be causing the nasopharngyeal reflux. We also see a speech path and pulmonolgist for swallowing/eatting issues and lung problems. Hes currently up to 13lbs thanks to 30cal/oz elecare We had an endoscopy and it showed minimal damage so themeds are working but again hes in pain. just wondering if someone could help me in the right direction or that to do?

[hellbennt]

hang in there, mama!

THIS LINK, Groupie Intro, Is a good place to start!

also: I would think w/ known aspiration, you’d be told to thicken feeds to a specific consistency?

[Anonymous]

Yes we r doing half Nector now, we were doing Nector thick and side lying position during feeding. We r going to be seen in the aero digestive clinic at our children’s hospital on Tuesday. They told us las week that if his pain doesn’t get under control they would need to do the fundo but they scared us with all the complications of the surgery

[Anonymous]

WOW!!! I’m sorry your children have suffered so much! HUGS!!! I hope that soon you can find some relief. I know how hard it is to have watch your child be in pain and not know what to do about it. When I was in those shoes it made me feel like a bad mom. But please don’t let yourself feel that way. I am SURE that you are a great mom and doing everything you know to do for your children.

I am not at all suggesting this as a cure but rather as something that could possibly lessen some pain…. Have you ever tried probiotics and/or digestive enzymes?

From days after birth my boys had acid reflux and couldn’t tolerate dairy and later I found out there were other foods they couldn’t tolerate. They drank Nutramigen, and were on Prevacid avoided many foods. When they were ages 2 and 4 someone suggested giving them a supplement of probiotics and digestive enzymes. We have been very surprised and thankful at how much of difference this has made in our childrens lives. Here is a little of what I have learned about how and why they help.

The reason that my children had so many digestive problems is that they had an enzyme and probiotic deficiency. The pancreas is what makes digestive enzymes and puts them in our stomach to break down the food we eat. All foods have enzymes in them but anytime a food is cooked or processed it kills the enzymes. With our diets today of mostly cooked and processed foods it’s hard for our pancreas to be able to produce enough enzymes. Without enough enzymes in the stomach to break down the food the only thing our stomach knows to do is produce more acid to try to break it down. Too much acid in the stomach will cause heart burn, acid reflux, indigestion, irritable bowel syndrome, etc.

If a parent has a pancreas that isn’t producing enough enzymes then it is possible that their children can be born with a pancreas that doesn’t work well either. If the mother will take a supplement of enzymes and probiotics while pregnant she will pass these on to her baby and have a baby with a healthy digestive system.

Probiotics are the good, live bacteria that live in our body. One of the things they do is coat and protect our entire digestive tract (and also the ears and nose). When the stomach produces too much acid then it is forced up the esophagus and down the intestines and will kill probiotics. (Antibiotics also kill probiotics.) When the probiotics are depleted then the acid is traveling right up next to the , throat, esophagus and intestines with no protection. This can cause them to get raw, inflamed, and even bleed sometimes.

Again…. although my children were helped tremendously, every child is different but it might be something worth a try for you.

[Anonymous]

My daughter had to have a fundo a week before she turned 10 months old—and i can tell you that i would do it again in a heartbeat. My daughter was failure to thrive, anemic, refluxing almost 25% of the time and her esophagus was getting ulcerated at only 8 months old.

she was on oxygen for the first month and I remember a couple of time the relux would come up through her nose and right into the oxygen tubes. When it would come out her nose she would scream hysterically—-it had to burn something fearce—-that’s why I could never do a summmer sault in the swimming pool–water up the nose hurts too much!

My daughter actually had more reflux when she was upright than when she was lying down. She had one prolonged episode that lasted 44 min.–and she slept right through it.

I find it interesting that they are checking for a cleft palate–I am assuming they are looking for a sub-mucous cleft palate since a regular one would be easy to see.

One of my twins has a sub-mucous partial cleft palate and a double uvula–it just looks like a fatter than normal uvula with a little uptward indent in the bottom. I guesss we were fortunate that it closed most of the way. The only way we found out about it was when she had her tonsils out around 5-6 years old and the ENT could feel a little notch under her soft palate. I have heard that this condition can sometimes affect their speech–but it never affected my daughter in any way–it is just fun to tell people that she has a double uvula!!LOL!!

When my little Sylvia had her fundo, they discovered that she had a good sized hiatal hernia–it had not shown up during two upper GIs nor had it shown itself during her scope.

She has never had any problems from her fundo, although she continued to be failure to thrive until she was two–we had a bout with esophageal thrush and then she developed obstructive sleep apnea and an inguinal hernia–she had her tonsils and adenoids removed and her inguinal hernia repaired a week after she turned two.

She Is 9 years old now and doing great. She cannot throw up, but she can burp.

If your son shows minimal damage, than the pain he is having sounds like it is not esophageal pain, but possibly [ain from the reflux in his sinuses. I have severe reflux and when I take meds, it can control the pain, but it does not stop the reflux from coming up—and it leaves you with all kinds of uncomfortable sensations. Our ped Gi told me that they thought that sometimes that is why babies cry with reflux even when it is treated well–they still are uncomfortable and crying is the only way they can tell us. however, I think your son is feeling more than just uncomfortable sensations.

I have an appt tomorrow with a GI. I have had to have my esophagus dilated 3 different times because my food gets stuck sometimes–that is really painful. I would really like to have a fundo done—I have been dealing with this for almost 22 years—our surgeon tried to tell me aboput 14-15 years ago that I needed surgery–wish I had listened.

Good luck, and remember that a lot of these babies come through fundo surgery with flying colors–and even some of the side effects go away after a little while.

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