Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Congratulations! I'm so glad they listened to you! Mom to , 5 - GSD and PI Meredith, 3 - GSD and PI , 8 - healthy Carmel, IN _____ From: [mailto: ] On Behalf Of Deska Brown Sent: Wednesday, July 30, 2008 11:26 AM Subject: update on Jayden Ok ... so I got a call from the immunologists office this morning, and I guess they got the letter. They have called ish Rite and are trying to get everything set up with them for Jayden's IVIG. They have to call the insurance company and see if it's going to be covered. I told them to let me know if there is a problem. I will do whatever I need to about seeing about coverage and making sure it's ok. I am just glad that my letter did some good .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 FANTASTIC!! and yet I know this is scary. He is going to be fine. Now it is time to talk about the day of infusion. We started IV when my son was 3 and I was sure I wanted a port ( especially as a nurse) but we did his infusions every 3 wks for 6 years before we went to sub Q and we only had a few very bad situations ( when he was on Prednisone for lungs or other sever infections). What we did was made Lucas " king of the day " on his IV days. He got to eat anything he wanted for the day, buy a small toy up to a certain amt. and rent a movie to be viewed at his infusion) Lucas is Bipolar and has numerous other issues but this worked for him. He NEVER gave us a hard time about his infusions. Although he gives a terrible time about everything else in life. Just begin thinking about what you want to do to set it up and get other ideas from people here. An IV only hurts for a few seconds. As far as reactions. The RATE needs to be very slow to start ( we always started at 5cc and then added 7cc per 15 min until we were up to rate and for years that was a max of 35cc per hour. He eventually was able to go up to 75cc but several years down the road. Each child is different. We also premedicated with Zyrtec and Ibuprofen and did very well. ( We found that Benadryl made him very agitated and he had a nasty hangover so we stopped it) others use steroid IV and other things be we never had to. Your son is going to feel better over time. I also would continue looking to Sub Q for us it has been a God send and I would not go back. Your Journey has taken a new turn. BARBIE update on Jayden Ok ... so I got a call from the immunologists office this morning, and I guess they got the letter. They have called ish Rite and are trying to get everything set up with them for Jayden's IVIG. They have to call the insurance company and see if it's going to be covered. I told them to let me know if there is a problem. I will do whatever I need to about seeing about coverage and making sure it's ok. I am just glad that my letter did some good .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 Well ladies. I'm still frustrated. I took Jayden to his normal ped yesterday for the blisters/boils all over his head. They are filled with puss or liquid. The doctor popped one to do to a culture and is supposed to call me back as soon as the results come back. BUT no answers yet. The doctor was actually puzzled cause the blisters are ONLY on his head and nowhere else on his body. They look just terrible. They now ares starting to get crusting and ...ick! I hope they do not scar!!! I was given an antibiotic to give him " just in case " its an infection. I wish I had a more clear answer. He's going to the Orthotist tomorrow at 11am to see what they say there and possibly getting an adjustment. One I'm upset they couldnt get him in sooner. I'm definately going to ask about the soap thing again. My paperwork from Hanger as well as verbal instructions were to wash with baby shampoo and water and rinse well, and that I could alternate that with rubbing alcohol. I think just to be safe Im going to stay with alcohol just in case for some reason there was some soap residue that caused this. Cross your fingers we get the helmet on asap so that everything gets back on the road. Im really hoping my son isnt allegic to the inside of the helmet but if he were wouldnt he have reacted sooner than two weeks? Sigh. Thanks for thinking of my little Jayden Bug. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 I fogot to ask, are there blisters where the hole is open on the top of the band? I'm just wondering, if they're only where the foam has contact with the skin, it definitely sounds like a contact rash/reaction (though I've never heard of one that severe). But if they're completely covering his head even in places where there is no contact with the foam (like the hole opening or velcro opening), then maybe it's unrelated? Or that could also mean it's just more severe than a simple contact reaction, I guess. I don't know! I just hope you can get it worked out! Jake-2 (DOCBand Grad 9/19/08) Jordan-4.5 > > Well ladies. I'm still frustrated. I took Jayden to his normal ped > yesterday for the blisters/boils all over his head. They are filled > with puss or liquid. The doctor popped one to do to a culture and is > supposed to call me back as soon as the results come back. BUT no > answers yet. The doctor was actually puzzled cause the blisters are > ONLY on his head and nowhere else on his body. They look just > terrible. They now ares starting to get crusting and ...ick! I hope > they do not scar!!! I was given an antibiotic to give him " just in > case " its an infection. I wish I had a more clear answer. He's going > to the Orthotist tomorrow at 11am to see what they say there and > possibly getting an adjustment. One I'm upset they couldnt get him in > sooner. I'm definately going to ask about the soap thing again. My > paperwork from Hanger as well as verbal instructions were to wash > with baby shampoo and water and rinse well, and that I could > alternate that with rubbing alcohol. I think just to be safe Im going > to stay with alcohol just in case for some reason there was some soap > residue that caused this. Cross your fingers we get the helmet on > asap so that everything gets back on the road. Im really hoping my > son isnt allegic to the inside of the helmet but if he were wouldnt > he have reacted sooner than two weeks? Sigh. Thanks for thinking of > my little Jayden Bug. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 Antonia, don't worry about scars. Little ones are so amazing at healing. I'm sure it will be gone quickly. I think the main thing is to try and figure out why and avoid it again. Allergies don't necessarily come the first day or two. Sometimes it takes a certain amount of exposure to trigger it. However it could be bacteria etc. When you are ready to put the band on again, obvously you'll have to go very slowly and do lots of skin check. Please keep us posted. -christine sydney 2.5 yrs starband grad > > Well ladies. I'm still frustrated. I took Jayden to his normal ped > yesterday for the blisters/boils all over his head. They are filled > with puss or liquid. The doctor popped one to do to a culture and is > supposed to call me back as soon as the results come back. BUT no > answers yet. The doctor was actually puzzled cause the blisters are > ONLY on his head and nowhere else on his body. They look just > terrible. They now ares starting to get crusting and ...ick! I hope > they do not scar!!! I was given an antibiotic to give him " just in > case " its an infection. I wish I had a more clear answer. He's going > to the Orthotist tomorrow at 11am to see what they say there and > possibly getting an adjustment. One I'm upset they couldnt get him in > sooner. I'm definately going to ask about the soap thing again. My > paperwork from Hanger as well as verbal instructions were to wash > with baby shampoo and water and rinse well, and that I could > alternate that with rubbing alcohol. I think just to be safe Im going > to stay with alcohol just in case for some reason there was some soap > residue that caused this. Cross your fingers we get the helmet on > asap so that everything gets back on the road. Im really hoping my > son isnt allegic to the inside of the helmet but if he were wouldnt > he have reacted sooner than two weeks? Sigh. Thanks for thinking of > my little Jayden Bug. > Quote Link to comment Share on other sites More sharing options...
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