Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Anne - We have only used Chloral Hydrate and Versed. I hope that you are able to come up with some others . . . . Does the anethesiologist have any ideas? Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 please tell me your experience with sedatives and pain meds that have worked the best for your children. Currently we use hydromorphone, (dilaudid) which is about 10 times more potent than morphine dose for dose as well as valium, chloral hydrate, Benadryl and vistaril. What else is there????? We are not able to gain control of 's migraines and he is progressively becoming tolerant to these. For example the doses we give now would come close to killing an adult who had never had them before. Sam is only 10 kg. He is now in need of O2 during these episodes. If you have any ideas please please share them. We are working with our attending doctor and an anesthesiologist who are both superb and they would be open to anything that would help . Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 In a message dated 04/02/2000 3:24:10 PM Eastern Daylight Time, juhlmann@... writes: > My 6 yr. > old was hysterical last night watching him scream so out of his mind. She > is a really sensitive child and it was equally as heart breaking watching > her pain at his pain. > Anne Anne - I am just so very sorry that Abby has to go through this, as I am for the rest of you. I can imagine it is heart breaking. I feel heartbreak about it, too, and that is from a huge distance, never having met your children, not seeing the episodes, and so I can only imagine how horrifying it must be for you guys. How about the new nurse? She has a hospice background, right? Was it pediatric? Hospice nurses push a lot of heavy meds . . . of course, she probably doesn't know much about mito, and that is probably what you need. I hope that someone on the list has some experience which will help! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 The 2 doctors are going to talk tomorrow. Previously the anesthesiologist has called Dr. Cohen and Dr. Cohen recommended beta blockers. But neither of our local docs want that for Sam as he has autonomic insufficiency and they would have to admit him to ICU and think it is an accident waiting to happen if we do that. the other option Dr. C recommended was riboflavin but it does not come IV and Sam can ONLY have IV products. Between the IV only and the autonomic issues the choices get very slim. Dr. B, (our anesthesiologist) said he will talk to anyone anywhere if they can help him with Sam. It is just a very heart breaking thing for all of us. My 6 yr. old was hysterical last night watching him scream so out of his mind. She is a really sensitive child and it was equally as heart breaking watching her pain at his pain. Anne ---------- > We have only used Chloral Hydrate and Versed. I hope that you are able to > come up with some others . . . . > > Does the anethesiologist have any ideas? > > Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 For migraines, I take Tenormin/atenolol as prophylaxis, 2 or 3 times a day. The dose depends on weight. Caffeine is also a help to me. For use during an attack, I used to take Imitrex inhaler, now my doc has me on Zomig. The Zomig takes longer to work, but lasts longer. Staci's birthmom, Ann takes Excedrin Migraine, that has asprin, acetaminophen, and caffeine in it. The migraines were an important of her history that led to the diagnosis of partial Complex I in Staci... and Ann. Years ago, before the Imitrex and Zomig came out, I took a Compazine suppository and laid down for several hours. Thank God for the new meds! Hopefully these will help. Hugs, Kt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Anne, Valium is about the only thing that has help . All other cause obstruction. It does not take away pain, but helps him to deal with it. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 > > How about the new nurse? She has a hospice background, right? Was it > pediatric? Hospice nurses push a lot of heavy meds . . . of course, she > probably doesn't know much about mito, and that is probably what you need. > We'll meet her tomorrow and see. She supposedly also has NICU experience. At this point it would just be nice to have a nurse not quit or have even a small clue what to do. I'll let you know how it goes. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 In a message dated 04/04/2000 12:06:27 AM Eastern Daylight Time, juhlmann@... writes: > We'll meet her tomorrow and see. She supposedly also has NICU experience. > At this point it would just be nice to have a nurse not quit or have even a > small clue what to do. I'll let you know how it goes. Anne > I can imagine. I will keep my fingers crossed (and toes, too, if that will help!!!) Hope all goes well!!!!!!!!!!!!!!!!!!!!!!!!!!! Kathy C. mom to , and Meg Quote Link to comment Share on other sites More sharing options...
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