Fixit Posted August 17, 2010 Author Report Share Posted August 17, 2010 Ok..Sorry all...i need SOME MORE support.. i emailed teacher earlier in th day to have a conference...she is very nice and the school is supportive. i didn't say anything just that i would like to talk. She said he is a smart boy..but she's noticing vocals and movements at school..have i notice anything the same at home....THe first 2 days his new teacher and last years couldn't beleive he had evan had a problem, consider last year the teacher thought he might end up having seizures???? came off the bus with vocals!!! :( DH starts with a new company next week, ins will be cigna.... Today, when he got home they were the worst since, I guess our now apparent backslide... today is 21 days post taper...... I guess it's time to call doc L back??? and arrange pheresis??? I'm so sad... i thought maybe we were going to be the lucky ones!!! i'm equally concerned not doing some bigger gun and not resetting his cells.. i feel like i cant make decisions anymore...should i wait till monday when dh is officially on with the new company..or let the administrator of the office know now.. or do you think he can still recover if i do the mortrin thing over the weekend... do you think a doc will prescibe another steriod... should i call doc l or b to tell the ent we saw just the week before our trip to take his tonsils out first...should that include atnoids??? Plus hubby, sees the worsening and keeps saying dont' worry about it...and we have been not in a great place lately.... Another thing..just want to get it out and hope for a response...i thought dh brother had rf,,he actually had scarletina??? is that close to the same thing..he had joint pain and couldn't use his legs when he was 6...does this correlate to autoimmunie or pitands Link to comment Share on other sites More sharing options...
thereishope Posted August 17, 2010 Report Share Posted August 17, 2010 If it will make you feel better to speak with Dr L, then I suggest putting the call/email in now. That way you have a few days for her to respond. As for contacting the employer...what do you need to contact them for? As for insurance, you are usually on it once you start, even if you don't have your insurance card yet. Unless, there is a window of waiting. sometimes employers do not give insurance until you've been there for a month. Really, the only info you need is the group # and subscriber #. You don't have to the the employer any medical details. Link to comment Share on other sites More sharing options...
Fixit Posted August 17, 2010 Author Report Share Posted August 17, 2010 If it will make you feel better to speak with Dr L, then I suggest putting the call/email in now. That way you have a few days for her to respond. As for contacting the employer...what do you need to contact them for? As for insurance, you are usually on it once you start, even if you don't have your insurance card yet. Unless, there is a window of waiting. sometimes employers do not give insurance until you've been there for a month. Really, the only info you need is the group # and subscriber #. You don't have to the the employer any medical details. so you think i should call her office tomorrow, even though we are lame duck till monday??? i guess if i ask her, (she asked why ds tonsils weren't out) that in the mnean time she can contact them to line upt the ectomy....should i ask about atnoids too??? Link to comment Share on other sites More sharing options...
thereishope Posted August 17, 2010 Report Share Posted August 17, 2010 It's pretty common to take out adenoids at the same time as tonsils. My son had them both out at the same time. But are you suppose to call Dr L for that or a local ENT? Perhaps if a local ENT won't supply you with adequate antibiotics and maybe a possible steroid burst, if needed post t and a, Dr L would. I say if you are freaking out and concerned, put the call in. If he was really improving then you are starting to see a consistent downward spiral, she may offer you something. I don't know. You don't know...not until you talk to her. It may take a few days for her to get back to you. I'm still a bit confused about the insurance. Even if you call her tomorrow, nothing would be done immediately, except for a possible refill on meds. If you need to wait until Mon to fill the rx so insurance pays for that, at least you have things squared away and ready. If it's a matter of making an appt, you can make an appt now and your insurance will be active by the time that comes around. If she can get the balling rolling fast on something, just tell her insurance won't be active until Monday. Offices are used to things like that. People change jobs and insurances all the time. Link to comment Share on other sites More sharing options...
matis_mom Posted August 18, 2010 Report Share Posted August 18, 2010 (edited) Hi Fixit! I know it's a horrible feeling when you think you are out of this nightmare and you see it creeping back up... I'm kind of there myself since ds is doing markedly worse this last week. Mainly I wanted to reply about that ear infection. My son did react when siblings had ear infections, and he actually got one himself even though he was on full strength antibiotics. He barely complained, but I took him in because I knew the others had it, and sure enough, his ears were infected. So if you can, take him in to make sure he is clear. Also try to keep in mind that stress does not help, and if you are stressed out, he will sense that. I know, it's VERY HARD to keep it together when you see your child suffer. On the bright side, we also have CIGNA and we LOVE it! They did mess up the approval for plasmapheresis (out patient only???), but I take that as Divine Intervention because I actually had strep at the time, it would have been for nothing! Hang in there!!! Isabel Edited August 18, 2010 by mati's mom Link to comment Share on other sites More sharing options...
Stephanie2 Posted August 18, 2010 Report Share Posted August 18, 2010 Yes, the motrin protocol calls for regular dose (by weight) every 3-4 hours while awake, for 3 days. I am going to start it tomorrow on DS5 cuz he went downhill today. BTW, spoke to Dr. Rossignol again today...he is really growing on me! Link to comment Share on other sites More sharing options...
Fixit Posted August 18, 2010 Author Report Share Posted August 18, 2010 Yes, the motrin protocol calls for regular dose (by weight) every 3-4 hours while awake, for 3 days. I am going to start it tomorrow on DS5 cuz he went downhill today. BTW, spoke to Dr. Rossignol again today...he is really growing on me! thanks and awesome....one of the moms called their office and was curious about Dr R.... i need to wait until at least friday..to dose in morning, go there for lunch and continue over weekend...it' hard to dose all these meds during the school week... Link to comment Share on other sites More sharing options...
Fixit Posted August 18, 2010 Author Report Share Posted August 18, 2010 Hi Fixit! I know it's a horrible feeling when you think you are out of this nightmare and you see it creeping back up... I'm kind of there myself since ds is doing markedly worse this last week. Mainly I wanted to reply about that ear infection. My son did react when siblings had ear infections, and he actually got one himself even though he was on full strength antibiotics. He barely complained, but I took him in because I knew the others had it, and sure enough, his ears were infected. So if you can, take him in to make sure he is clear. Also try to keep in mind that stress does not help, and if you are stressed out, he will sense that. I know, it's VERY HARD to keep it together when you see your child suffer. On the bright side, we also have CIGNA and we LOVE it! They did mess up the approval for plasmapheresis (out patient only???), but I take that as Divine Intervention because I actually had strep at the time, it would have been for nothing! Hang in there!!! Isabel Thanks isabel...i am looking forward to the new ins for many reasons and one is, i think you mentioned before they are panda(and the pits) friendly! Link to comment Share on other sites More sharing options...
parents4eyes Posted August 18, 2010 Report Share Posted August 18, 2010 (edited) x Edited September 9, 2010 by parents4eyes Link to comment Share on other sites More sharing options...
Fixit Posted August 18, 2010 Author Report Share Posted August 18, 2010 (edited) Can I expect 100%??? this azith pill is red…..could that be it and can I get it w/o color? My doctor told us our daughter will never be 100%. I think it is a matter of opinion. But chronic does mean chronic until someone finds a cure. If you are unable to find the azithromycin in the white pills, you can try a compounding pharmacy. Depending on your insurance, it could cost more. At a compounding pharmacy they mix it there for you. They can make things without preservatives, dyes, allergic ingredients, etc. They can also put it in whatever size capsules that are best for your child. That is good to know... i went in person to cvs this morning and they just called, saying they already order me the new WHITE pills and they will be in tomorrow!!! My doctor told us our daughter will never be 100%. That makes me too Sad... i'm sorry i don't remember..i think my hashimots has a strong hold on me...have you done ivig with your dd?? is she doing well right now??? EDIT...just went back and read she is at 75%---looking at ivig.. Edited August 18, 2010 by Fixit Link to comment Share on other sites More sharing options...
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