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Help! When does the pain end for the baby? I've been in tears...
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Anonymous
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OP, what did the scope show? I'm wondering if he could have something like EOS or MSPI. Does he vomit blood or is there blood in his diapers? Lots of mucous?
I was relieved when you were admitted and am relieved that you have a temporary tube for the time being. I've known several kids with eating aversions that have had tubes placed, it keeps them safe and buys you time. He is so little and the dehydration can be so dangerous. We've been in the situation of not being able to get a vein and it's horrible. Have they done any allergy testing? Ask for a RAST test when he is more hydrated. How is he acting? I posted on your other thread about the site http://www.kidswithfoodallergies.org/ I really think that other parents there will be able to help you, seriously, post today. The dairy should be completely our of your milk in another 7-10 days or so. I'd call the Breastfeeding Center and ask for a copy of their elimination diet if he is more willing to take bmilk. You and your family will be in our thoughts. |
Anonymous
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OP - I am so sorry to hear how difficult this has been for you, your baby, and your family. It sounds like you are doing the right thing trying to get a second opinion. Our GI was Ali Bader at Children's Hospital (202-476-2258), who is in the same practice as Dr. Benny Kerzner, who is also well-regarded. I find it disturbing, if I read your post correctly, that a GI would just, in essence, give up and not really have a plan for treatment for a baby in this much distress. The results of the endoscopy are really critical here -- I agree with a previous poster that the existence and extent of damage should be able to tell you (and the GI) a lot, not the least of which is whether your baby really suffers from reflux or whether it is something else.
You are a great parent and your baby's will and toughness is epic. He is strong, and he, and you, will find relief with the right diagnosis and treatment plan. Thank you so much for taking the time to update, with everything else that is going on. I will add my positive thoughts for your family to those of all the other posters. |
Anonymous
OP here. Hello, we are actually working with Dr. Pluta already. Although she has been great to us by making herself available, my husband and I feel that a second opinion is necessary at this point given that the oral intake has not gotten any better. As a matter of fact, it is becoming even more difficult. A week ago, I was still able to "dream feed" my son. Now, his suckling reflex is diminishing and he does not suckle as much particularly when he senses that it is the bottle. We have continued stimulating him with lots of touching near the mouth area and providing him with a paci. As to one of the other poster's question about whether an upper GI had been done. It has been done and and the procedure confirms the acid reflux although our doctor believes that the esophagus should be significantly healed at this point and the intake might be due to oral aversion. We are still awaiting the results of the biopsy to rule out allergies although frankly I have been on the elimination diet and DS has been on Neocate. As a parent, I believe there is something else in the mouth / throat area that is bothering him. For the first few minutes of the feeding, he acts hungry and tries to suckle on the bottle nipple several times and gasps for air with eyes sometimes tearing up. Then he just gives up and wants nothing to do with oral feeding. He is now also beginning to vomit during feeding which has never been the case previously. |
Anonymous
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PP here - I posted about swallowing disorders. Check out this website to see if any of this looks familiar. I would insist a swallow study be done.
http://www.asha.org/public/speech/swallowing/FeedSwallowChildren.htm |
Anonymous
| OP, I am so sorry that you are still struggling so much. I think that you should insist on a swallow study ASAP. You should trust your instincts. Is his intake better with the feeding tube? Unfortunately, proceedures like the scope can increase oral aversion. Which hospital were you at? If he didn't vomit during feeding before, what were his reflux symptoms besides the arching and aversion? |
Anonymous
| OP - How's it going? Any progress? There are a whole bunch of us (apparently) waiting to hear from you again to make sure your DS is doing better. |
Anonymous
| OP, I've been thinking and worrying about you and your baby all week. How are things? You've got a whole community here pulling for you. Thoughts and prayers continue to go out. Please update us when you can. |
Anonymous
| OP I have absolutely no experience with troubles like yours, but I did read a post here or elsewhere about a kid who was tiny and not thriving but who had their tonsils or other throat glads removed, and then gained a ton of weight and started eating more. In addition to the "swallow tests", perhaps this is something you can add to your list of things to investigate? I just also wanted to give my suppor to you. I have faith that you and your child will make it through this. |
Anonymous
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I have a friend whose child was ultimately diagnosed with low muscle tone and reflux. He aspirated liquids that weren't thickened and had a strong gag reflex, particularly when starting solids, that led to lots of vomiting.
When your son sleeps, does his jaw go slack and his tongue stick out? (more so than your other child did at that age?) If so, that could be a sign of low muscle tone. This could be causing some swallowing issues. Not to be too dense, but have people checked the muscle under his tongue to make sure it is not too short? I had issues swallowing and with speech when I was young due to this. Just another idea. I'm really pulling for you and your family, OP. Please hang in there and continue to update. |
Anonymous
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Just another mom that wanted to express my support for you and your family...I have thought about you everyday and am keeping you in my prayers. (If you don't believe in prayers, then I am sending you lots of supportive and positive thoughts!) |
Anonymous
| I'm another Mom who thinks about you often, and I'm sending you lots of positive thoughts and prayers. |
Anonymous
| OP, I hope that things are a bit easier. Another mom who thinks often of your family. |
Anonymous
| OP - if it helps, my daughter wouldn't breast feed well (took in very very little - 1 oz after 20 minutes) and refused a bottle. We had her weight checked every other day and she was not gaining. We ended up starting solids early and that kept her going until around 5 months she just started taking a bottle on her own. I know it is so frustrating, especially when you don't know for sure what is causing the problem. We never found out with our little girl. But now she's 14 months and takes a bottle with the best of them. Good luck! |
Anonymous
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OP
I am so sorry that you are going through this; it just makes me want to cry. I tried to read all the posts and you are doing a great job trying to handle the situation. I also have a friend whose child was a premie and she had acid reflux and low muscle tone. I will try to find out what is is called and if/what they did about it; i remember her saying that her baby always used to drool out the food--they had to put about 6 bibs on her. In addition, I know someone else who had problem with the membrane underneath the tongue. I think there is surgery they can do to clip it and make it less painful to eat. Again, so sorry for all your are going through. Pls let us know if there is anything we can do to help. |
Anonymous
| OP, how is it going? I'm guessing that was you who posted about the G tube? Has he been able to gain any weight? |