Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 Just wanted to send some prayers to Maggie . Hope she feels better soon, and can rest and enjoy the holiday. Happy Thanksgiving to you all. Lani & , Diane Wiederholt <hockeytough@...> wrote: > > Good Morning Everyone, > > I apologize for not updating sooner, things have been just a little crazy here in the Peds unit! > Maggie has responded to the Vancomycin, Rocephin and Prednisone Cocktail. Fever is gone and Liver Enzymes are almost down to normal. However, they still have not found a source for her infection which makes me wonder if possibly all along this has been a systemic flare and there was never an infection to begin with. > Maggie had a temp of 105 for about 3 hours. Once they started the IV antibiotics and the Prednisone bolus, it came down. The problem is.....which was it that did the trick? > You can have an infection and not know exactly where it is, especially if you are a person with Primary Immunodeficiency, Maggie has had infections her whole life. > You can also run a temp of 105 and then have it be gone in 3 hours with Systemic JIA, she has done this before too. > What her Pediatric Rheumatologist and her Primary Doctor are looking at the most is her liver. > Maggie started to taper her steroids months ago at anywhere from 5mg to 1mg per week. She has been on high doses of steroids for over two years starting at 120mgs daily and was down to 4mgs daily. It might have been a flare because of the decrease..........it might have been an infection somewhere that caused the flare. What I do know is each and every joint in her body was huge, red ,swollen and VERY angry. Her liver enzymes started to climb on Monday and continued to rise to about 4x the norm. Once the meds were started the liver responded as well and today her liver enzymes are almost normal. > What her Rheumatologist wants to know (because it is very interesting I suppose) is if and when we drop her steroids once again, is Maggie's liver going to react the same way. If it does then they know it is the disease itself, if this is the case Maggie may not be able to decrease her steroids, at least not now. > The side effects of Prednisone are awful for anyone. But for a Child with Osteogenesis Imperfecta it is REALLY not a great choice of med. Not only does it decrease bone density, it interferes with an infusion that Maggie gets called Pamidronate, which is what helps with her bone pain and bone density. If you take steroids while getting Pamidronate infusions, it somehow thins out the center of the bone where the marrow is produced. When this happens it does not allow the bone to produce red cells. SO, if Maggie has to stay on steroids to keep her liver in control, she will NOT be able to continue her infusions of Pamidronate. This will mean a lower bone density and more fractures and pain. > As of now we don't have anymore information on what the next step is.. Yesterday the plan was to switch her to oral antibiotics and see if the fever returns, then drop the steroid to see if her liver flared. > To me it makes sense to just do one thing at a time and see if there is any sort of reaction period. If they do both things at the same time we will never know which one was helping her. Maggie is convinced it is the antibiotics (because she HATES the Prednisone) she will never give that medicine any credit, also she is a kid. > I am thinking if they would have just increased the Prednisone to begin with, she probably never had an infection at all and the Liver would have come back to normal without the antibiotics.(just my theory, what do I know) > Because I have to lie my trust somewhere, I will let her doctors do what they feel is best. I am glad that they are all working together on this, I feel better just knowing that. > It would sure be nice if this disease came with an owners manual. It doesn't seem to me that there are any two cases that are exactly the same, it is very frustrating! > > I will post more after we actually know something. Her spirits are up a little better, which was my biggest concern, that is half of the battle right there! > > Thank you all for your prayers and encouragement! For those of you that left carepage posts, she does read those every day and thinks it is awesome that she is not alone in the world of Arhtritis. > > Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis,PIDD) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2009 Report Share Posted February 13, 2009 Diane, I am very sorry to hear this. Please know you and Maggie and the rest of your family are in our thoughts and prayers. I hope she gets better real soon. If you need anything, please let us know. Sending much move and hugs! , , and Jayna > > Maggie's blood culture just came back positive for staph in her bloodstream.. > Please can you say some extra prayers for her she could really use them right now!! > > Thanks so much! > > Diane and Maggie age 11 (OI,CP,Systemic JIA,PID,Uveitis) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2009 Report Share Posted February 13, 2009 Diane maggie is in my prayers tell her i hope she feels better soon > > Maggie's blood culture just came back positive for staph in her bloodstream.. > Please can you say some extra prayers for her she could really use them right now!! > > Thanks so much! > > Diane and Maggie age 11 (OI,CP,Systemic JIA,PID,Uveitis) > > > > > Quote Link to comment Share on other sites More sharing options...
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