Siezures related to cleft - Anyone with this experience?

[tweed1@frontiernet.net]

My daughter has a unilateral cleft lip with only the alveolar notch of her gum involved, no palate. She has suffered from nocturnal seizures since she was 3 (now . The first diagnosis was epilepsy and put her on dilantin. None of the test were positive, and I didn't believe that was the problem and eventually the neurologist weened her off meds. A sleep disorder study revealed she was having apnea and recommended we see an ENT who decided to take out her adenoids (age 5). They were enlarged to 4x normal and thought to be the problem. The apnea disappeared and we had a new and rested daughter. The problem is it seems to have returned. THe ENT has checked and the adenoids have not grown back and her tonsils are not enlarged. Has anyone ever had an experience like this and what information do you have. We have also checked for allergies and are unsure of where to go from here. I have always had the gut feeling it was some how related to her cleft, but without a palate involved?? I don't know - Does anyone else??????

[awama2000@excite.com]

In connection with your article, I don't know much about the subject of seizures as I am not a qualified person, but does your daughter have any problems with overcrowding of teeth?

[ashirley@brtc.net]

Has anyone done any kind of brainscan on your daughter. My son also has a unilateral cleft lip without the palate. He is only 6 weeks old. He has something called holoprosencephaly and schizencephaly. You might check for these things. The schizencephaly is a cleft in the brain that sometimes goes with a facial cleft. Just thought that might help.
April and Ethan

[Jeff Alterman]

It is interesting to learn that a cleft of the brain may sometimes occur together with a facial cleft. Perhaps it explains a few odd things with myself. I have a submucous cleft hard palate, microform cleft lip (right side), submucous bilateral cleft alveolar ridge with a dropped pre-maxilla (1/16") and dental issues and a soft palate that is too low so I sometimes make a weak snoring noise when I breathe through my mouth hard and sometimes I tend to snort a little. The cleft sometimes hurts a little though it isn't very bad. I also have Asperger's Syndrome which is a mild form of autism. I think that on occasion I have tiny seizures that don't mean anything, but they could be related to the cleft and/or the Asperger's Syndrome. Though my speech is quite good, it does sound a little nasal and I find that the tonal quality of the speech is a weird cross between that of a grown man and a child. I sound a little strange when I speak. Though I'm pretty much used to the way I sound, some people find it disconcerting though.


Jeff Alterman at alterman@bestweb.net