We waited all these weeks for Ty’s third swallow study and we got a big fat “INCOMPLETE” on it. I talked to Ty on our trip down to Phoenix Children’s Hospital about what they would do and got him all geared up to drink his “chocolate milk”. We got there, I set him in the little chair, all was going according to plan. Then, as sometimes happens with Ty, the unpredictable set him off. The X-Ray machine. It terrified him when the tech moved the machine up next to his face. He got bugged eye and started pushing it away and then went into a full blow panic attack. I tried tried tried to calm him down but was unsuccessful so we had to quit. I was a little frustrated with the hospital staff because comments were made that indicated they believed the issue to be a “typical 2 year old temper tantrum”. It was not. I can’t recall Ty ever having a full blown temper tantrum. It isn’t in his nature. He may cry and get upset but he doesn’t have the stamina to keep it up – he is too happy natured. A panic attack is different. Ty doesn’t go into panic attacks often but they are usually triggered by something atypical…ie..a gloworm baby, a crib mobile, a light up moving dinosaur, Uncle Daniel’s Polaris Ranger…and more recently he went into a panic attack when I put him in his playpen in an unfamiliar environment. Some of these things MAY be two year old stuff because two year olds do get scared from time to time (duh) but not usually from the types of things that Ty gets afraid of which makes me suspect that most (though likely not all) of these incidents are SPD related (sensory processing disorder). Now before anyone say’s it, yes I know that many 2 year olds would get scared by an X-Ray machine. I was only irritated that they treated the situation like an out of control toddler, instead of a former 25 weeker who is no longer in the “ignorance is bliss” camp. He knows what happens in hospitals and he has learned to be afraid. This may not bode well for future appointments.

At any rate, the speech pathologist said that she wasn’t surprised based on the report of Jan 2005, that Ty is still having trouble with aspirating and choking. Bottom line is still, don’t give Ty anything that is thin liquid or could be “juiced” to a thin liquid. If you smash it and thin liquid comes out, not on the menu for Ty. She didn’t believe (based on previous reports) that he would get over this anytime soon and that in the future I will have to teach Ty to tell other people what he can’t have.

I have a new theory though based on my conversation with her. I told her that Ty was given an official CP diagnosis yesterday and asked if mild CP could also be affecting the muscles in his throat/swallow reflux. She said “definitely”. If that’s the case, it shouldn’t get worse but there is also not much we can do about it except hope he learns to accomodate for it. After thinking about this all afternoon, I think CP makes more sense than anything. The “quadrapelegia” form of CP affects all four limbs and trunk/throat areas as well. Those that have this diagnosis are usually in a wheelchair and on a ventilator. I brought up quadrapalegia to the pediatrican once and he instantly disagreed because quadrapelegia is associated to the severe forms of CP which obviously and thankfully, Ty doesn’t have. But, the Orthopedic Dr. yesterday confirmed that Ty does have CP in his feet/legs and based on my descriptions, also in his hands. So my question is, why WOULDN’T it affect his throat and swallow reflux too thus making him more uncoordinated with that sensitive muscle as well. Doesn’t that just make sense? If he is in PT for gross motor delays and OT for fine motor delays all because of a root cause of CP, then why wouldn’t it also be a strong possibility for other muscles that he is struggling to control too? I realize that the medical definition of “quadrapelgia” is reserved for the extreme cases, but I would think that a person could still have muscle weakness in all the same areas and just be very mildly affected. Nobody knows what areas of his brain were scarred so how can they say what muscles groups it did NOT affect? Following my reasoning? (You can see on a CAT scan what areas, but associating that to specific muscle groups would be more difficult. )

I’ll ask the neurologist about that next week but in the meantime, the next time I have to tell someone why Ty can’t have certain foods, I think I might attribute the issue to CP. I think there is a strong case for that and I think people that don’t understand an unknown cause (and therefore don’t validate my request), would be more likely to “get it” if I tell them that mild CP has affected Ty’s muscles and makes him less coordinated, THUS he has trouble swallowing thin liquids and foods that juice thin liquids.

When we got home, Jim say’s “Ty were you scared today? What made you afraid?” Ty answers “THE MACHINE!”

So much for that.