Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 We premedicate with Benadryl, Tylenol and prednisone. gets 25 mg of Benadryl 1 hour before the infusion, 5 hours into the infusion and 5 hours after that. He gets 650 mg of Tylenol if needed. He takes 20 mg of prednisone PO for the 2 days before infusion, 20 mg IV 1/2 hr before the infusion and then 20 mg PO night of infusion. Then if he gets a reaction at all (headache, temp, etc.) he gets 20 mg. He usually needs it 2 days after the infusion. is only 6, so he gets the same thing except he only takes 15 mg of the prednisone and no Tylenol for him. It depresses his temp for some weird reason. Hope this helps in some way. It has taken us a long time to get to this point, but it really helps us........ weighs 44 lbs and Jake weighs about 76 lbs. How old is Adam? His treatment is set for the 9th of August? We just had a treatment last Sat. The boys get one every 2 weeks. We go see the immunologist on the 27th. He will probably move Jake to every 3 weeks and leave where he is. His levels just don't improve.......Jake's have gone up to 1040. Chris's stay around 740-840 range....and he is getting more per kilo then Jake is......Go figure. It anyone can explain this to me please do........ Anyway hope this helps. Sue W Mom to Jake (10) and (6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 We premed Alissa with motrin and benadryl one hour before the infusion this seems to calm the headaches a bit. We will infuse on the 4th of August will ask my IV nurse if she has anymore suggestions. But I think all the parents have it pretty well covered. Take care and hope the kids are doing better. regards, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Sue >Date: Tue, 20 Jul 1999 18:22:09 -0400 > > > >Please tell me about pre/post meds.... Adam's first infusion is Aug 9th. > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Dear Sandy, It sounds like you have it all covered then. I know how anxious you are. The first few times are so scary. You never know what to expect. He will be much better off getting the IVIG then without. It might not seem like it at first, but just give it some time. I really wonder sometimes if these guys (Jake and Chris) would even be around now if we weren't getting the IVIG. I will keep you in our prayers. Autumn---How are Mark and doing? What is the latest? I pray for your continued strength in this journey. I really hope you are getting some rest. I wish you the best..... Sue W Mom to Jake (10) and (6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Dear Autumn: Hope Mark will be better. Will keep him in our prayers good luck with the GI visit. annette mom to alissa cvid,asthmatic >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Sue >Date: Thu, 22 Jul 1999 23:05:21 EDT > >From: Autti@... > >Dear Sue (mom to Jake and Chris), > >Thanks for asking about the boys. We leave for Cleveland in the am for the >day...GI visit. The biopsy went well, but Mark was TERRIFIED. Sad news >is....they need another one. There were so many bruises that it was as >though Marks legs were one big bruise, make sense? They took two biopsies >and sent one to a local lab and one to the Mayo Clinic. We met with our >local immunologist the same day as the biopsy procedure and he mentioned >the >possible treatment of an anti-mylaria (sp?) drug if the test is positive >for >their suspicions. In the meantime, we will keep Mark on the anticoagulent. >Mark seems generally " un-well " . He has a fever, looks like some possible >thrush in his mouth and has was might be cellulitis on his leg. We had him >looked at today again by our local immunologist and he wants to see him >again >next Tuesday. So at least they are keeping a close eye on Mark. > >I will let you know what happens. > >Hope all is well with your boys! > >Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, Samter's > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Thanks for the pre/post med info. Adam's already on IV prednisone (daily), so I guess that won't be a factor. I'll ask about the benedryl, but since he's scheduled for a PICU administration of IVIG, I'm guessing they've got it all covered. (He's 45 lbs). Thanks Again! Sandy Adam's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Dear Sue (mom to Jake and Chris), Thanks for asking about the boys. We leave for Cleveland in the am for the day...GI visit. The biopsy went well, but Mark was TERRIFIED. Sad news is....they need another one. There were so many bruises that it was as though Marks legs were one big bruise, make sense? They took two biopsies and sent one to a local lab and one to the Mayo Clinic. We met with our local immunologist the same day as the biopsy procedure and he mentioned the possible treatment of an anti-mylaria (sp?) drug if the test is positive for their suspicions. In the meantime, we will keep Mark on the anticoagulent. Mark seems generally " un-well " . He has a fever, looks like some possible thrush in his mouth and has was might be cellulitis on his leg. We had him looked at today again by our local immunologist and he wants to see him again next Tuesday. So at least they are keeping a close eye on Mark. I will let you know what happens. Hope all is well with your boys! Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, Samter's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 1999 Report Share Posted July 23, 1999 Autumn I hope you get the results soon. Will be prayying for you family especiallyMark. God Bless --- annette lennon wrote: > > > Dear Autumn: Hope Mark will be better. Will keep him > in our prayers good > luck with the GI visit. > annette mom to alissa cvid,asthmatic > > > >From: Autti@... > >Reply-To: PedPIDonelist > >To: PedPIDonelist > >Subject: Re: Sue > >Date: Thu, 22 Jul 1999 23:05:21 EDT > > > >From: Autti@... > > > >Dear Sue (mom to Jake and Chris), > > > >Thanks for asking about the boys. We leave for > Cleveland in the am for the > >day...GI visit. The biopsy went well, but Mark was > TERRIFIED. Sad news > >is....they need another one. There were so many > bruises that it was as > >though Marks legs were one big bruise, make sense? > They took two biopsies > >and sent one to a local lab and one to the Mayo > Clinic. We met with our > >local immunologist the same day as the biopsy > procedure and he mentioned > >the > >possible treatment of an anti-mylaria (sp?) drug if > the test is positive > >for > >their suspicions. In the meantime, we will keep > Mark on the anticoagulent. > >Mark seems generally " un-well " . He has a fever, > looks like some possible > >thrush in his mouth and has was might be cellulitis > on his leg. We had him > >looked at today again by our local immunologist and > he wants to see him > >again > >next Tuesday. So at least they are keeping a close > eye on Mark. > > > >I will let you know what happens. > > > >Hope all is well with your boys! > > > >Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, > Samter's > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 1999 Report Share Posted July 23, 1999 From Kirstie - Mum to Stef, Cam(CVID), Isaac and (CVID) Thanks for the support, Stef has gone off doctors in a big way. I am going to go and talk to our family doctor on Monday about our next move. Better go for now and get some housework done. Going to a friends for takeaways tonight - Her husband is on your side of the world at the moment (North Carolina) and mine is away playing squash for the weekend, so we are going to open a bottle of wine (or two) and relax. Don't know if I mentioned it to this group or not, but I am going to be in Reno next May for the International Parent to Parent Conference, if anyone from the group is going I would love to meet you and put some names to faces. Bye for now, Kirstie Quote Link to comment Share on other sites More sharing options...
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