Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Mandy, A couple of things about Tobi--ask your doc for a starter kid and you get a free video and a free pari neb cup (that is def. worth the money...), the pharmacies provide these free to the docs as starter kits, so be sure to get yours... Also, remember you need to use the pari neb cup if you aren't already using that. Ask for a prescription for a pari baby mask (probably a size 2 for Seth) so that he actually gets most of the meds and half of it doesnt hit the walls or go in his eyes, etc as typically happens when you just blow it in their faces... (if you are already doing this, sorry for the additional info...) the other masks that come with the cheap, throwaway neb cups are not compatible usually. We did have some trouble finding the masks locally and finally ordered them from Grandmom Bev's pharmacy in Florida. We love those masks, there is no strap and the kids can hold them themselves. both have been holding their own neb cups since about 12-15 months old... (and they are soft, too) there is a pari mask for older kids with a strap, but hates it...its the plastic variety and he hates the strap...the other still fits so we let him use it. Also, you can twist and turn them in any direction, so you can even give the neb while they are asleep lying down (which you can't do with other styles of neb cups/masks) Can you tell we just love this neb system? Also, one more thing, my kids had lots of trouble " not coughing " after Tobi....so a couple of tips.... give a regular albuteral neb first so they don't get bronchospasms. then, if you do pulmozyme, do it second and then cpt after the pulmozyme. You don't want him to cough out the Tobi, so we wait til after CPT and we always do the tobi while they sleep at naptime and in the middle of the night. Just a tip! Good luck! Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Mandy, A couple of things about Tobi--ask your doc for a starter kid and you get a free video and a free pari neb cup (that is def. worth the money...), the pharmacies provide these free to the docs as starter kits, so be sure to get yours... Also, remember you need to use the pari neb cup if you aren't already using that. Ask for a prescription for a pari baby mask (probably a size 2 for Seth) so that he actually gets most of the meds and half of it doesnt hit the walls or go in his eyes, etc as typically happens when you just blow it in their faces... (if you are already doing this, sorry for the additional info...) the other masks that come with the cheap, throwaway neb cups are not compatible usually. We did have some trouble finding the masks locally and finally ordered them from Grandmom Bev's pharmacy in Florida. We love those masks, there is no strap and the kids can hold them themselves. both have been holding their own neb cups since about 12-15 months old... (and they are soft, too) there is a pari mask for older kids with a strap, but hates it...its the plastic variety and he hates the strap...the other still fits so we let him use it. Also, you can twist and turn them in any direction, so you can even give the neb while they are asleep lying down (which you can't do with other styles of neb cups/masks) Can you tell we just love this neb system? Also, one more thing, my kids had lots of trouble " not coughing " after Tobi....so a couple of tips.... give a regular albuteral neb first so they don't get bronchospasms. then, if you do pulmozyme, do it second and then cpt after the pulmozyme. You don't want him to cough out the Tobi, so we wait til after CPT and we always do the tobi while they sleep at naptime and in the middle of the night. Just a tip! Good luck! Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Daelynn, NOPE, Daddy gets Daddy of the millineum.....I go to sleep at 5 (right now, cause Mall still needs hourly nebs....) but he has to get up at 5. To me, staying up is NOTHING but ask me to get up at 5, and I am worthless and probably a few choice names as well...but none of them flattering.... I just read your post, hehehe we both had the same suggestions (and poor Mandy probably heard them all about 10 times already.....) Oh well, nite Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Daelynn, NOPE, Daddy gets Daddy of the millineum.....I go to sleep at 5 (right now, cause Mall still needs hourly nebs....) but he has to get up at 5. To me, staying up is NOTHING but ask me to get up at 5, and I am worthless and probably a few choice names as well...but none of them flattering.... I just read your post, hehehe we both had the same suggestions (and poor Mandy probably heard them all about 10 times already.....) Oh well, nite Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 <<<so we wait til after CPT and we always do the tobi while they sleep at naptime and in the middle of the night. Just a tip! Good luck! Jennie >>>>> So Jen do you ever get any sleep. Wow. In the middle of the night... definitely a nominee for Mom of the Millennium!!! Daelynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 Mandy.... When my kids with CF have gotten sick, they dehydrated much much easier. Last yr. we had to do IV fluids twice for that reason at home..... this year we managed to force the fluids, basically. You need to do everything you can to get fluids into him, popsicles, sprite, frozen anything liquid, ice chips, gatorade....anything, and lots of it. Take care and hope seth gets better Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 Okay,so Seth has been sick this week and I thought he was getting better untill he threw up his dinner last night,and then he ppuked all over me this afternoon.He has been drinking alot of gatoraide this week,but yesterday he kept on the same diaper for 7 hours,and the same todat,hardley anything at all.We had his blood drawn,and it came out like brown,thick mud.His electroliytes[sp] and his kidney function tests both came back okay,but I still feel like somethings not right.Any opinions? Mandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Mandy, It was good to hear from you, but am sorry that Seth is having a rough time. I hope that he is doing better now - and that you are taking good care of yourself. I just wanted to let you know I'm thinking of you. Hugs, Mo At 10:01 PM 04/03/2000 -0600, you wrote: > > >Okay,so Seth has been sick this week and I thought he was getting better untill he threw up his dinner last night,and then he ppuked all over me this afternoon.He has been drinking alot of gatoraide this week,but yesterday he kept on the same diaper for 7 hours,and the same todat,hardley anything at all.We had his blood drawn,and it came out like brown,thick mud.His electroliytes[sp] and his kidney function tests both came back okay,but I still feel like somethings not right.Any opinions? > Mandy > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click./1/937/3/_/480698/_/952229811/ >------------------------------------------------------------------------ > >*********************** >This is a secular list. >*********************** > >-------------------------------------------------- >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > >Our webpage is at http://www.eohio.net/malbright/cfparents.htm > >_________________________________________________ >Post message: cfparentsonelist >Subscribe: cfparents-subscribeonelist >Unsubscribe: cfparents-unsubscribeonelist >List owner: cfparents-owneronelist >_________________________________________________ > ><font color= " red " >WE HAVE A CHAT PAGE!!! http://www.onelist.com/chat/cfparents </font> >_________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.