[my3sons6]

My son is 37 months old and has ftt since he was 9 mo. He has had an endoscopy and they found bleeding in his stomach. he was put on prevacid. Previous to this he was put on periactin to stimulate his appetite. He is now 25 pds and 37 1/2 inches and is getting smaller as we speak. He has had every test out there and all are negative. Marinol was started today and i would like to know if anyone else has tried this course of treatment and its outcome. He does not eat food but drinks about 32oz of pediasure a day if im lucky.

[Admin-pattyandthemoos]

I have not used this. My son had FTT at nine months and continues to be small. He is on pediasure but he is starting to eat now. I wish I knew more about this.

What kind of therapy is your son getting? Does he have problems eating/chewing or is it mostly problems with his appetite and stomach problems.

There are only a few moms here on the board right now so I will see what I can find out for you on Marinol.

[my3sons6]

Originally posted by pattyandthemoos@Mar 31 2005, 09:36 PM
I have not used this.* My son had FTT at nine months and continues to be small.* He is on pediasure but he is starting to eat now.* I wish I knew more about this.*

What kind of therapy is your son getting?* Does he have problems eating/chewing or is it mostly problems with his appetite and stomach problems.*

There are only a few moms here on the board right now so I will see what I can find out for you on Marinol.
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[my3sons6]

Originally posted by my3sons6+Apr 1 2005, 10:37 AM-->

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[my3sons6]

Originally posted by pattyandthemoos@Mar 31 2005, 09:36 PM
I have not used this.* My son had FTT at nine months and continues to be small.* He is on pediasure but he is starting to eat now.* I wish I knew more about this.*

What kind of therapy is your son getting?* Does he have problems eating/chewing or is it mostly problems with his appetite and stomach problems.*

There are only a few moms here on the board right now so I will see what I can find out for you on Marinol.
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Thanks for responding, He does not have any eating or chewing or texture problems. He really does not like to eat. The marinol is a last resort before feeding tubes and another endoscopy. Marinol for ftt is controversial according to his GI however I dont know what else to do. We have seen nurtritionist. Noah just does not like to eat.

[Grantsmom]

Hi, I am sorry to hear that your son is facing these challenges right now. And its definetly no fun for you. I know first hand about dealing with a feeding tube. My son had one for the first 19 months of his life and was unable to leave the NICU without it. I will keep you both in my thoughts and pray that you will be able to avoid one.....but also know that many children do use them and for all the cons there are pros.


I was interested in the fact that you had a scope and where put on previcid.

Did your son get dx with GERD/Reflux??

Previcid is an acid blocker, that is it lowers the acidic level in hopes of preventing damage to the esophagus. Many children, including my son, lack from a desire to eat or develop oral aversions because of the pain eating causes. What is your dose?? Grant has been on Reglan, Zantac, and now his third dose of Prilosec. I was just reading into the info you gave and could be way off.

i am not familiar w/Marinol. Sorry !

[my3sons6]

Noah has gastritis (bleeding in his stomach) they have not determined why. He was first put on zantac with no results. He gets a 30mg capsule of prevacid. We open the capsule and split the beads into 3 he gets it 2x a day. We put the beads in a little water and he drinks it with a straw. The GI says the prevecid will help with the pain he is feeling in his stomach and also heal the stomach. We thought that might be his problem with eating. But, he is fine he has been on the prevacid for a year. He never was fond of food. He has been on pediasure for about 2 years. He drinks about 1000 calories a day but still does not gain weight. I can not put him in daycare or around to many school age children because if he gets sick he stops drinking as well as eating and falls very low in weight. His endoscopy was easy he was asleep and felt nothing. My GI may want to do it again because he is not eating and even though his specimen from the last endoscopy was negative for celiac he seems to think that is what is wrong. I just have a hard time watching my son say no to food. He says no mom Im not hungry and that could go on for days. Marinol was just started. It does not seem to help so far. He sees his GI again may 23. If no significant weight gain is seen we do the feeding tube and I have avoided it so far. I think my luck is running out though. I fear what if he gets a feeding tube and he is fine until it is removed and then he loses the weight again. Doc said it could be metobolic and wont present itself until he is a little oler. We have had every metobolic test known to man.

[Grantsmom]

That explains a little more.....the possible metobolic disorder. My son also takes his Prilosec very simular, except I have to put the little granuales in some applesauce. The GI system is such a complex thing and it can really effect a childs life. I am sorry to hear that you and your son are struggling with it so much right now. I will continue to hope for improvement and no feeding tube......but please feel free to post or vent....it helps sometimes...I know.

[Admin-pattyandthemoos]

I was just doing some reading on marinol. Marinol is this similar to marijuana? Sorry to be dumb but it says it is TSH and the name marinol so I kind of figured that was what it was. I also seen it was prescribed for AIDS patients and people with cancer so I am assuming it is similar.

I have had gastritis before as an adult so I can imagine how your little one is feeling to some extent. I remember when I had it I lost my appetite, I was nauseous all the time and just couldn't eat. It took me a while before I started feeling better. I rember taking tagimet and pepsid and can't really say any of them helped that much.

Are there any other tummy meds they could try. Or maybe work on a really bland diet. I wish I could be a little more help.

[my3sons6]

patty, thanks for the info on marinol. To answer your ?. We have tried everything re: his stomach. Prevacid so far is the best. I think his stomach is better. He is now having a problem with bowel movements. He was constipated once and after a painful bm he tore. Now he will hold his bm until he no longer can. The gastro put him on a laxative/stool softener with no luck. We had to give him baby lax which to everyones surprise he held the bm and had to redo the enima the next am with much luck. Now his Dr's think with a full stomach he may not be hungry. They took him off the laxative and told me to give him 2tbsp of mineral oil. What a joke!!! I could not give this child any of it. I had to fight him to give it to him. Then I decided to may a shake and add it to it. For calories I was told to give him 1 can of pediasure a little whole milk, 1 envelope of carnation instant breakfast a big scoop of ice cream a tablespoon of corn oil 2 Tbsp of mineral oil strawberries, blueberries. blend until smooth. I freeze the remainder for the next day. He loves it. The mineral oil he can't taste he has better bm but still cries. But the shake is full of calories. However, he does not drink enough per day to add weight. Noah is pooping out as much as he takes in calories per day. The Marinol does however give him the munchies. Keep your fingers crossed. If I can beat the feeding tube this time it will be a miracle.

Alisa, Noah's mom