tag:blogger.com,1999:blog-6185629626254877517.post6044727305043383987..comments2023-10-12T05:47:43.156-07:00Comments on The Mounce Family: Rett Syndrome AttacksThe Mounce familyhttp://www.blogger.com/profile/10258427917999094104noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-6185629626254877517.post-48996974191941197792009-04-14T11:11:00.000-07:002009-04-14T11:11:00.000-07:00I find holidays are the hardest. Certain things ar...I find holidays are the hardest. Certain things are 'expected' to happen in the day and most times the kids are just not up to them. It is just too much. I still struggle with this with my Sarah and she is 12. I do not know what the solution is, but know you are not alone.lesleyhttps://www.blogger.com/profile/09501503992952033631noreply@blogger.comtag:blogger.com,1999:blog-6185629626254877517.post-35570878172627369362009-04-13T17:15:00.000-07:002009-04-13T17:15:00.000-07:00Thanks everyone for the comments. He is on reflux ...Thanks everyone for the comments. He is on reflux meds but I don't think they are working and we are trying Bethanochol- a recommendation from the GI. He uses Melatonin everynight and it works but it doesn't keep him asleep. With Vital Stim he always tolerated a level 10-12 on his throat but he gets cyring and screaming at a level 4. Maybe I will try to up it and see if he can handle. I never thought about the teeth. We go to the dentist this week so I will ask then.The Mounce familyhttps://www.blogger.com/profile/10258427917999094104noreply@blogger.comtag:blogger.com,1999:blog-6185629626254877517.post-36149577630516573062009-04-13T10:03:00.000-07:002009-04-13T10:03:00.000-07:00I would definately look into the reflux issue. Als...I would definately look into the reflux issue. Also have his teeth checked to make sure he hasn't ground one of them down to a nerve. It is so frustrating to our kids because to him he is telling you.<BR/>Hang in there. It is so hard. Big hugs.Abbysworldhttps://www.blogger.com/profile/18291271430939849263noreply@blogger.comtag:blogger.com,1999:blog-6185629626254877517.post-24633791865139182702009-04-13T09:47:00.000-07:002009-04-13T09:47:00.000-07:00Brandi, let me just join the ranks of those who kn...Brandi, let me just join the ranks of those who know exactly how you feel! The screaming...The not eating...For us it is the seizures right now...As she fell asleep on my lap yesterday my sister said "boy I wish mine would still nap.." and I wanted to say "well, if she had just had 5 seizures, yours would too!Rebeccahttps://www.blogger.com/profile/07083975974025991852noreply@blogger.comtag:blogger.com,1999:blog-6185629626254877517.post-20120271481754838112009-04-12T21:45:00.000-07:002009-04-12T21:45:00.000-07:00We too, know exactly how hard the screaming can be...We too, know exactly how hard the screaming can be! After a few days worth, it can certainly be trying on the nerves ;) and i can't imagine how our kiddo's must be feeling! Have you tried Melatonin? We've had moments where it's been the only thing that works and also seen it not work at all! I'll be praying that you all get some much needed rest and for the little guy to have better days! I'm curious about his VitalStim. Are you doing it on his cheeks or neck and what number are you starting on? When we first started with Karlie, she would scream after the first ten minutes or so. We were starting on a four then the lady doing it was told that b/c of sensory issues, we should start much higher. We had success starting anywhere between seven and ten with cartoons and easy to eat foods. Most days she could handle an hour at a time with increasing intensity. Wishing you guys all the luck and sending big hugs your way!Karlie Gracehttps://www.blogger.com/profile/10967734276821475106noreply@blogger.comtag:blogger.com,1999:blog-6185629626254877517.post-2124818783594673202009-04-12T16:35:00.000-07:002009-04-12T16:35:00.000-07:00Brandi, is he on reflux meds? Also, with both my ...Brandi, is he on reflux meds? Also, with both my kids, Zoloft for anxiety has made a huge difference in living a semi-normal life! Hang in there, it will get beter.<BR/><BR/>Hugs for Alabama XOXOCarrie and Averyhttps://www.blogger.com/profile/14047033694894816381noreply@blogger.comtag:blogger.com,1999:blog-6185629626254877517.post-46609405815815388982009-04-12T15:30:00.000-07:002009-04-12T15:30:00.000-07:00I am praying for you!! It is times like this that ...I am praying for you!! It is times like this that we all HATE Rett - when the good days get farther and farther apart and your lack of sleep sets in. I am so sorry. We are going through major feeding issues to and our wake up call is about 2:30.....I know EXACTLY how ou are feeling and I too long for the day our kiddos to not have to suffer with Rett Syndrome. Hang in there....better days are coming!<BR/>Big Hugs from Indiana!Kellyhttps://www.blogger.com/profile/13680795280261614317noreply@blogger.com