This post is going a little bit out of order, but we saw a specialist today, so I thought it would be the perfect time to talk about it. Throughout most of last winter, Connor always sounded phlegmy and just sort of junkie when breathing. He also seemed to have frequent fevers. We brought him to the pediatrician several times and were always told that it was probably just one cold after another. They did put him on antibiotics two times; once for a possible ear infection, and once for a possible sinus infection because the fevers and junkie sound just didn't seem to go away on their own. Connor's physical therapist was the first to suggest that it was possibly a problem with silent aspiration after drinking his liquids, but we really weren't sure about this because he always had that sound, not just after drinking which is when it would commonly be heard. When Connor finally had his first speech therapy consult through early intervention, the speech therapist recommended that we start thinking about possibly having a swallow study sometime down the road just to rule out the silent aspiration. I scheduled the Modified Barium Swallow Study and during the test back in June 2011, the speech/feeding specialist and radiologist found that Connor does in fact silently aspirate on thin liquids which could eventually lead to pneumonia and other related problems. At that time, it was advised that we thicken all liquids to nectar consistency and he was ok on pureed and solid foods. Just when we had finally switched over to just plain whole milk without any mixing required, we were back to mixing, this time with commercial thickeners! We were told that this can be fairly common in children with Down Syndrome and that kids typically will outgrow it. Therefore, a follow up Modified Barium Swallow Study was scheduled for September. During this test we found that Connor's swallowing problems actually got worse and he was now aspirating on nectar thick liquids as well as the thin liquids. So, we now have to thicken to honey consistency which is like a very thick milkshake. A spoon can basically stand on its own in an open cup of this consistency. They referred us to an Otolaryngologist to see if there is a structural reason for Connor's silent aspiration. Connor already has an ENT that we see for his ears, so I was able to move that appointment closer up and we will be seeing that Doctor next week. They specifically referred us to an Otolaryngologist who works at the Aero-Digestive Disorders Department at Children's Hospital and we have an appointment to see him in November as well.
Today we met with a Feeding and Swallowing Specialist as well as Nutritionist from the Special Medical Services from the State of NH. They watched Connor eat solids as well as drink his liquids and are concerned that he may still be aspirating. It is believed that he drinks his liquids too quickly without taking breaks between sips. So one thing that we need to work on teaching Connor is to sip, sip, stop, sip, sip stop. Since he is always so easygoing, he found this song and game fun and seemed to catch on right away. Hopefully he will continue to remember to sip, sip. rest! Some other oral motor exercises were recommended as well including pressure moving along his tongue with a NUK brush among others. We are now supposed to work on those 4 times a day to help teach his tongue the proper techniques for eating and swallowing. The good news is they are also found to help with speech development!
So, once again, we have our work cut out for us, but will do anything to help Connor. It is great that he is so accepting and willing to try new things! We now have some new fun games to play and songs to sing while eating =)
Will keep you posted when we go back to the ENT. Hopefully we will hear some good news!
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