Hi!
We finally managed to have bram's reflux under control,but we are really struggling to feed him.
The point is that he is gradually getting worse, to the point at the moment he doesn't really accept a bottle unless he is asleep or drowsy...When he is awake he looks for the bottle by opening his mouth,but can't really drink without putting his own hands in his mouth too and always end up getting stessed and eventually refusing it.Sometimes he eats enough, but the majotiry of times we don't go beyond 16-20 oz.
The funny thing is that even while asleep he pulls away from the bottle and looks for it a second later...he also chokes often with a lot of cough.The way he sucks from the bottle is also weird, he open and closes his mouth around the teat as opposed to sucking (not always, but very often).
All this is new.I'm seeing a huge difference to the behaviuor he has now compared to when the reflux was not on the right medications.
The GI told us we need a feeding therapist, but unfortunately there is none in my city, i would have to travel to london...
I tried for about 3 weeks (under nursing nurse advice) to feed him when he wants it only for 20 mins and without forcing him, but he didn't work, he wasn't eating enough and lost some weight...
Also this plan doesn't really fit with me as it makes more anxious.
Do you think feeding therapy may help me?
Thank you very much!

Francesca:

I got that "worried mommy feeling" when I read your thread. I should say worried therapist. Bram has dysphagia, or weakness in his swallow. This must be addressed immediately or else you will have a baby who will not eat at all, and your physician will want to stick a tube down him in order to get nutrition in him. I realize getting medical attention is an issue due to your location from what you have indicated. What Bram really needs is a modified barium swallow (MBS) study. What we can do in the meanwhile is thicken his feedings. This is typically the outcome of a MBS study.

If you are using expressed breast milk, you must use a commercial thickener. Breast milk is so wonderful that the enzymes in it break down cereals such as rice and oatmeal. Your breast milk would be thin again after 3-4 minutes. You can use Simply Thick (www.simplythick.com (http://www.simplythick.com)) or Hydra-Aid (search engine is Links Medical Supply). These are the only 2 products I have found are not broken down in breast milk.

If you are using formula, you may use baby rice cereal or oatmeal. If Bram has the tendency to be constipated, I would go with the oatmeal. If the cereal is not ground up (fine like flour), I put it in a coffee bean grinder or blender. It will go through your nipple better. Another thickening option would be Thick It or Thicken Up, which are commercial products found typically in a pharmacy. I do not typically use these products on little ones under one year because it can make babies hyper-stool or have diarrhea. Some infants do well on it.

Lastly, your flow rate (bottle nipple) must be compatible with your liquid consistency. Do not cut a hole unless you have to. Try and get a X cut or cereal cut nipple. If you are using formula, use 1 1/2 - 2 1/4 tsp. cereal per oz. of formula. If you are using the Simply Thick or Hydra Aid, try a nectar consistency first. If he is still choking, go to a honey consistency.

Francesca, if Bram is only eating in his sleep, you have a small window to fix this. If feeding aversion lingers beyond 6-7 months as you have described, I typically see these babies get g-tubes. Please write back with more information, if needed.

Robynne

Is the dysphagia from laryngomalacia? I am curious on how many gerd babies have it? does he sound f unny when he sleeps or crys? has he been diagnosed .. until about 2 months ago carson couldn't even drink anything liek water without it being thickened........ and he has that.

Hi Angela:

That's a good question, but no, the two are not related. Laryngomalacia is softening of the larynx or "floppy airway" as we commonly refer to it. Many infants have a high pitched squeaky sound that tends to get louder when they eat. Dysphagia literally means difficulty swallowing and typically is diagnosed when a child is aspirating (when the liquid or food is going into the lungs). Only 2-4% of babies with laryngomalacia have corrective (typically laser) surgery. Most little ones grow out of it. This is the same with dysphagia. However, if they do not grow out of the dysphagia, I start my patients on VitalStim Therapy (electrical stimulation to strengthen the swallow function). That's a totally different thread! I hope that clarifies the difference in the 2 conditions for you. Babies can have both conditions :)

Robynne

Angela:

Oops, I just saw that you are an RT. You know the anatomy and jargon then! Glad to have you here as part of our support network :)

Robynne