My baby can hardly swallow and no one can tell me what is the matter. We are losing ground here with feeding and while I am thankful that we have alternate-means to administer nutrition, we didn’t expect to become completely dependent on it.
Corrigan has had strep throat twice since December. Both times he had no signs of strep upon physical examination but the swabs came back positive. He is limited in his ability to tell us if something hurts, we have to watch him closely for limping or pained expressions, and in this case-furrowed eyebrows and hard gulps with every bite of food. He has had two endoscopies and there were no issues with his throat. We have had his tonsils checked as well, they were enlarged during his three week cough/cold, and two doctors have told me that while they are a little big, they are not worrisome. We are trying to get an appointment with an ENT in Baltimore.
He hasn’t been able to swallow well for months. Probably close to three months now and it seems to be getting worse. Hopkins has scheduled a swallow study but the only Speech professional that works with children is so overbooked that we can’t see her until mid-Spring. In the meantime, we are now down to only 3 grams of protein by mouth (the rest of his needs are now through his feeding tube) and most days I resort to giving him drinkable yogurts to make our quota. Even strawberries and bananas cause him difficulty with swallowing.
It is heartbreaking to watch him try to eat. He usually tries two bites and then is finished. He loves french fries and lately I have found them chewed, and then spit into a bowl on a table in my living room. He wants to eat them, this doesn’t seem to be an oral aversion but something is changing and getting worse. It looks painful for him, just as if you or I had a terrible sore throat, but again-we have had him examined and nothing seems amiss.
He has no problems with drinking as long as it is from a straw.
The video below is Corrigan chewing a 1.5 inch piece of mushy waffle fry from Chic-fil-a. He had chewed severeal times before I could get the camera to start recording. See how he struggles to swallow? This was his second bite, the first looked so hard for him that I nearly cried. This one went down a bit easier than the first.
Any ideas? Suggestions?
If we don’t figure this out soon, we will be relying on the tube 100% and this is not what we wanted when we had it put in nearly two years ago. His school has mentioned extra therapy to focus on helping him more with self-feeding but have asked us to make certain there are no medical issues before they start.