Tue, 29 Nov 2005

don't get why you couldn't come up and cuddle and comfort me. Why is it so hard for you to just come up, hold me and stroke my hair and listen and tell me everything will be ok? Why do i have to always put on a happy dispossition so you don't feel uncomfortable. When you get weapy, i don't pull away. i hold your hand and stroke your head. Why can't you do the same for me. That is all i needed. i just needed some comfort and suppost. instead you kept saying "i am still amazed that he qualified" i am totally stressing out over the fact that you keep saying that you are "amazed that he qualified". it feels like every time you say that, you are saying he doesn't deserve this wish. it feels like you are saying i am abusing the system. You say the autonomic stuff is not part of the AHC, and that the AHC itself is not life threatening. Please read below. from Alternating Hemiplegia of Childhood : Clinical Findings and diagnostic Criteria by Jean Aicardi, Marie bourgeois, and Francoise Goutieres "Paroxysmal autonomic phenomena were also ealy symptoms and could precede other manifestations of an attack, or occur in isolaation. The most common were paroxysmal dyspnea (see below) and vasomotor changes that included blanching or flushing of one limb or of half the body, with cold, clammy skin localized to one limb. These were usually seen on the same side as the hemiplegia that they regularly heralded in some cases. Some children become hypothermic or hyperthermic during the acute episodes. Many appeared sleepy and yawned repeatedly but seemed to have difficulty falling asleep. Vomitting was only exceptionally observed and was never prominent." "Some such episodes were associated with paroxysmal dyspnea in nine patients. However, dyspneic episodes also occurred in isolation in six children. Various respiratory abnormalities could be observed including swallowing and slow breathing, expiratory difficulties with wheezing and episodes of polypnea. Such dyspneic episodes were usually mild but in at least one child, apneic episodes were responsible for a frightening deep cyanosis that appeared life-threatening." "The clinical features of AHC are remarkably similar with respect to both ictal and interictal phenomena. They include: 1) onset before 18 months of age; 2) repeated bouts of hemiplegia involving either side of the body at least in some attacks; 3) other paroxysmal disturbances including tonic/dystonic attacks, nystagmus, strabismus, dyspnea and other autonomic phenomena occurring during hemiplegic bouts or in isolation; 4) episodes of bilateral lhemiplegia or quadriplegia starting either as generalization of a hemiplegic episode or bilateral from the start; 5) immediate disappearance of all symptoms on going to sleep with recurrence 10-20 minutes after awakening in long-lasting bouts; 6) eveidence of developmental delay and mental retardatoin and deurologic abnomalities including choreoathetosis, dystonia, or ataxia." i guess i am writing this because you seem to be treating me the same way mom does. like i know nothing and that what comes out of my mouth is always wrong. You have been snappy and blame me for the littlest thing. You get mad when i show any form of independance. i guess what i am also saying is you either support me in this or you don't. if you don't, and if you truly think he doesn't qualify, then i will pull him from the list. i will turn down his wish, as you seem to think his stopping breathing is not part of his AHC, or his lowered heart rate is not part of his AHC, or his fainting is not a part of his AHC.