peglem Posted September 16, 2010 Author Report Share Posted September 16, 2010 Peg Does she get solimedrol with her iVs I don't know. What is that? Link to comment Share on other sites More sharing options...
RNmom Posted September 16, 2010 Report Share Posted September 16, 2010 If it is solumedrol it is a steroid. Link to comment Share on other sites More sharing options...
peglem Posted September 16, 2010 Author Report Share Posted September 16, 2010 If it is solumedrol it is a steroid. Oh, no she doesn't get steroids w/ her IVIG. I don't think she needs to as we are not seeing any side affects. Link to comment Share on other sites More sharing options...
Lori Ann Posted September 16, 2010 Report Share Posted September 16, 2010 Sorry for what you are going through and praying for you! Link to comment Share on other sites More sharing options...
melanie Posted September 17, 2010 Report Share Posted September 17, 2010 Hi We havent had any side effects at all either.Dr J wants to continue with the solimedrol(sp) .Now I know why.Danny does real well for about 11 days after the IVs The life of the solimedral ...11 days coincidence ??? Does Allie get benadryl? Also Dr J said this time of year is THE WORST!!! Barimetric Pressure throws our kids .Dannys doing asthma meds right now .He hasnt needed any meds for asthma since he was 3 yrs old.. Im thinking about you and Allie all the time Peg..Read your posts from last month ,things were real good and they will get better again Melanie Link to comment Share on other sites More sharing options...
peglem Posted September 21, 2010 Author Report Share Posted September 21, 2010 Update...I'm more than a little miffed now. Allie's ped was back in town today. He called me near the end of the day- When he got in to the office this morning, those associates (who would not okay Allie's rifampin last week) decided they had to have a meeting with him @ Allie's treatment. Since its not a standard protocol, he needs to get a specialist to sign off on it. So he called around locally(specialists at PCH) and could get nobody to approve the treatment. So, he wants me to contact Dr. Latimer so he can discuss it with her. If she gives the okay, then we can use this treatment. I don't know what will happen if she doesn't agree. Hopefully she'll have another suggestion if that's the case. We really need more prayers here- I'm scared. Link to comment Share on other sites More sharing options...
Fixit Posted September 21, 2010 Report Share Posted September 21, 2010 Update...I'm more than a little miffed now. Allie's ped was back in town today. He called me near the end of the day- When he got in to the office this morning, those associates (who would not okay Allie's rifampin last week) decided they had to have a meeting with him @ Allie's treatment. Since its not a standard protocol, he needs to get a specialist to sign off on it. So he called around locally(specialists at PCH) and could get nobody to approve the treatment. So, he wants me to contact Dr. Latimer so he can discuss it with her. If she gives the okay, then we can use this treatment. I don't know what will happen if she doesn't agree. Hopefully she'll have another suggestion if that's the case. We really need more prayers here- I'm scared. we are here peg... you will get someone to help... try to be calm till the phone call... i have a long list on my prays tonight..your dd will be there too!! Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted September 21, 2010 Report Share Posted September 21, 2010 (edited) Update...I'm more than a little miffed now. Allie's ped was back in town today. He called me near the end of the day- When he got in to the office this morning, those associates (who would not okay Allie's rifampin last week) decided they had to have a meeting with him @ Allie's treatment. Since its not a standard protocol, he needs to get a specialist to sign off on it. So he called around locally(specialists at PCH) and could get nobody to approve the treatment. So, he wants me to contact Dr. Latimer so he can discuss it with her. If she gives the okay, then we can use this treatment. I don't know what will happen if she doesn't agree. Hopefully she'll have another suggestion if that's the case. We really need more prayers here- I'm scared. Oh Peg, I'm so sorry! Surely Dr. L. will validate the treatment! Why wouldn't she?! I have to admit, this has been a big fear of mine with our own ped. So I've been a little paranoid about leaving detailed messages with anyone else on the staff. I'm always afraid someone will question her decision to help us with abx long-term, and then she'll get skittish about prescribing them any more. I don't suppose reminding him (and his partners)of their Hippocratic Oath would help at all? ("I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.") Hopefully, Dr. L. will set all this to rest for him and you. Cyber hugs! Edited September 21, 2010 by MomWithOCDSon Link to comment Share on other sites More sharing options...
peglem Posted September 21, 2010 Author Report Share Posted September 21, 2010 I hope you guys are right. We only had the one appt. w/ Dr.L in January, and have not kept an ongoing relationship. But, her attitude was, "Why isn't this child getting immune treatment?" And so, she rubber stamped that so that the immunologist felt "covered" to give IVIG. Honestly Allie's doc has been treating her w/ this tension of probable disapproval from his colleagues...but feeling duty bound to do the best he can for her. I love that man! But, there's something wrong w/ the whole medical community if my child can't get treatment because she doesn't fit into some established medical protocol. Her doc has CAREFULLY done what seems to make sense and when we find something that works for Allie...he considers that reason enough to use the treatment. Its just common sense. And, my baby knows she is in trouble medically. She's been using her comm. device to ask for another IVIG...she wants help. She knows that helps. Her next IVIG is on the 30th- not too far away, but I don't think that by itself is going to turn things around. Thanks so much for the prayers...wonder what God has in mind for us this time! Link to comment Share on other sites More sharing options...
matis_mom Posted September 21, 2010 Report Share Posted September 21, 2010 I hope you guys are right. We only had the one appt. w/ Dr.L in January, and have not kept an ongoing relationship. But, her attitude was, "Why isn't this child getting immune treatment?" And so, she rubber stamped that so that the immunologist felt "covered" to give IVIG. Honestly Allie's doc has been treating her w/ this tension of probable disapproval from his colleagues...but feeling duty bound to do the best he can for her. I love that man! But, there's something wrong w/ the whole medical community if my child can't get treatment because she doesn't fit into some established medical protocol. Her doc has CAREFULLY done what seems to make sense and when we find something that works for Allie...he considers that reason enough to use the treatment. Its just common sense. And, my baby knows she is in trouble medically. She's been using her comm. device to ask for another IVIG...she wants help. She knows that helps. Her next IVIG is on the 30th- not too far away, but I don't think that by itself is going to turn things around. Thanks so much for the prayers...wonder what God has in mind for us this time! We will be praying for you guys, and for your doctor too. Did you ever consult an infectious disease specialist? Maybe they can help you find a antibiotic protocol that works, or at least give your pediatrician something to hang on to. Link to comment Share on other sites More sharing options...
peglem Posted September 21, 2010 Author Report Share Posted September 21, 2010 I hope you guys are right. We only had the one appt. w/ Dr.L in January, and have not kept an ongoing relationship. But, her attitude was, "Why isn't this child getting immune treatment?" And so, she rubber stamped that so that the immunologist felt "covered" to give IVIG. Honestly Allie's doc has been treating her w/ this tension of probable disapproval from his colleagues...but feeling duty bound to do the best he can for her. I love that man! But, there's something wrong w/ the whole medical community if my child can't get treatment because she doesn't fit into some established medical protocol. Her doc has CAREFULLY done what seems to make sense and when we find something that works for Allie...he considers that reason enough to use the treatment. Its just common sense. And, my baby knows she is in trouble medically. She's been using her comm. device to ask for another IVIG...she wants help. She knows that helps. Her next IVIG is on the 30th- not too far away, but I don't think that by itself is going to turn things around. Thanks so much for the prayers...wonder what God has in mind for us this time! We will be praying for you guys, and for your doctor too. Did you ever consult an infectious disease specialist? Maybe they can help you find a antibiotic protocol that works, or at least give your pediatrician something to hang on to. We haven't done that- but, probably the only one we could find is at Phoenix Children's Hospital. We've not had good experiences w/ specialists there, as far as stepping outside the checklist protocols. The thing is we know the rifampin/augmentin combo works- we've done it twice before. It just came to the attention of the other pediatricians in the practice this time, because her pediatrician was out of town. Link to comment Share on other sites More sharing options...
tired mom Posted September 21, 2010 Report Share Posted September 21, 2010 I hope you guys are right. We only had the one appt. w/ Dr.L in January, and have not kept an ongoing relationship. But, her attitude was, "Why isn't this child getting immune treatment?" And so, she rubber stamped that so that the immunologist felt "covered" to give IVIG. Honestly Allie's doc has been treating her w/ this tension of probable disapproval from his colleagues...but feeling duty bound to do the best he can for her. I love that man! But, there's something wrong w/ the whole medical community if my child can't get treatment because she doesn't fit into some established medical protocol. Her doc has CAREFULLY done what seems to make sense and when we find something that works for Allie...he considers that reason enough to use the treatment. Its just common sense. And, my baby knows she is in trouble medically. She's been using her comm. device to ask for another IVIG...she wants help. She knows that helps. Her next IVIG is on the 30th- not too far away, but I don't think that by itself is going to turn things around. Thanks so much for the prayers...wonder what God has in mind for us this time! Just want to say thinking about you and Allie today! Don't know what God has in his mind for you this time but I know He chose a very special mom for Allie!! Link to comment Share on other sites More sharing options...
peglem Posted September 23, 2010 Author Report Share Posted September 23, 2010 So, to update...I called Dr.L's office on Tuesday morning and spoke to her office staff. They said the best thing would be to have Allie's doc call her directly w/ his questions. So, I called and left that message with her doc's office. Then, I waited all day yesterday and all day today. Finally, the nurse just called and said that her doc wants to see her tomorrow to "check her skin"? So, I'm guessing he spoke with Dr.L and she recommended another treatment. Maybe doxycycline? That's all I can think why he'd be wanting to check her skin. Her skin looks pretty good, actually- hope that won't be a problem! I didn't say anything or ask any questions, I almost feel like I have to be sneaky about her treatment w/ other employess at his office. So, okay, all you prayer-type people out there- I really appreciate those prayers thus far...keep them coming a little longer, please? Link to comment Share on other sites More sharing options...
melanie Posted September 23, 2010 Report Share Posted September 23, 2010 what about her skin Link to comment Share on other sites More sharing options...
peglem Posted September 23, 2010 Author Report Share Posted September 23, 2010 (edited) what about her skin exactly. I don't know why he told the nurse that- unless the tx he has in mind is rx'd normally for skin problems. I guess I'll find out today. Edited September 23, 2010 by peglem Link to comment Share on other sites More sharing options...
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