Saturday, February 23, 2008

The investigation continues ...

So I've been on a mission to figure out what exactly the doctor was talking about with Payton's palate and it seems it is called "submucous cleft palate". Sob sob sob. What in the heck?! The description of this explains it exactly and part of this ... which the doctor also mentioned ... is that the uvula is split. The uvula is the little punching bag thing that hangs in the back of the throat. So WHY has nobody ever noticed this before when they have looked in her mouth? Because they don't even really look! Here goes my beef with doctors. GRR! Here is a little of what I have found about this condition ...

A submucous cleft is a cleft in which the surface tissue of the palate is intact but the musculature beneath the surface is not adequately or properly joined. Usually the only outward sign of the cleft is a bifid uvula (the punching bag in the back of the throat is split). However, it is often completely not detected at all until the child develops speech difficulties (at about age 2).

Even though there is not an actual hole between the oral and nasal cavities, the musculature does not work as it should, and sometimes the growth, particularly of the maxilla (upper jaw) and the alveolar ridge (upper gum line) is compromised.

The most significantly noticeable loss of function is in the soft palate. The soft palate is absolutely vital to proper speech development. It must be flexible enough to make the kinds of closures necessary to produce normal speech. If closure is not reached, air will escape into the nasal area because it is simply not blocked off at the back of the throat as it should be.

Kids with submucous clefts do not always have to have corrective surgery. Sometimes the cleft is not large enough to create insurmountable problems and the problems that the child experiences can be overcome with aggressive speech therapy and orthodontia. On the other hand, many times the surgery is necessary in order for the child to achieve the kind of control needed.

I'm so mad. I'm mad that the doctor sort of blew it off as nothing. I'm mad that she made it seem like leaving a little adenoid tissue in there would help the situation. From what I can tell, even if you have all your adenoid tissue, there are still issues! As if Payton doesn't already have enough speech hurdles to jump, now we have to deal with this. Does it ever end?! Can ANYTHING in her life be normal!? It so isn't fair.

1 comment:

  1. submucous cleft palate can cause problems with pressure sounds you make in your mouth...I think if I can remember 'g' is one of those sounds. Kallie ENT also just did a partial adenoidectomy as well. Kallie does not speak nasaly sounding but she had speech therapy for years to help her with the pressure sounds and proper formation of words. I know this is scary and new and ANOTHER freaking diagnosis but it is treatable with good speech therapy. Also, Kallie still had her uvula(tonsils) and her's are not split so maybe that was the case with Peyton? I sent you and IM feel free to IM me back or email me if you want any other information.