norcalmom Posted October 11, 2010 Report Share Posted October 11, 2010 Fixit, I feel your pain. I mean this literally since it exactly the same struggle I've had in deciding how to treat my DS. I'm really not in a position to offer specific advice, as unfortunately it seems only you can make those decisions.) I nearly had a nervous breakdown before deciding to move ahead with ivig . I do wish we had done more lyme investigation prior to ivig, we are doing that now. (myco P as well). BUT - ivig has been nothing but good. We may need another one (or two) but it has helped us tremendously. there are some old threads that ask about ivig, and if people will do it again - I think 100% of the responses were yes...or close too it. YOu are on your way with the T and A. Not everyone turns back pages - and for most its a minor thing compared to exacerbation. All you can do is try to figure out the odds, and get the odds in favor of your son. I bet the T and A is more difficult than the ivig. After the ivig, I felt like it wasn't nearly as big a deal as I made it out to be. Actually, the T and A surgery probably far worse! Im not trying to convince you what to do, but, plan for the worst and hope for the best. You may be surprised. Sounds like you are near Dr L...I'd make an appointment if you haven't already. Its a marathon. We may be dealing with relapses and looking for signs until they are 20 or beyond. BUT, there is so much hope. I think you need to talk to Dr L or B, or whoever is closest to you, so that at least a specialist is making the decisions, and you can try to get some sleep at night. Best- norcal Link to comment Share on other sites More sharing options...
Fixit Posted October 11, 2010 Author Report Share Posted October 11, 2010 (edited) teach sent another email Hi- He was having a hard time at the end of the day . . .he was trying to hold his nose to stop the noise. he came home and not as bad as i expected(i think i was used to it from the weekend..so how do i put a real gauge on it if the teacher is writing me)(how bad was he before that i think he isn't so bad now???)....but i am posting questions because it could be ALOT BETTER...it is pretty constant... i did give him about 375mg of nac when he came home and some benedry..... i will add nac anb ben to the mornings..... i reread the glutithione thread..and thought it said something about nac being precursor for glutithione...and i see nac is in d-hist..he is gettign 1000mg of c(which would be about 3x nac) and 500 quercetin already...so we will see how this does the next 2 days then ...i have in hand aller-max which contatines Q 125mg nac 100mg lhistine 100mg brom 50(which is in his moring Q) GSE 2,5mg (which makes me a little nervsous..but i think i need to retest) and some a, c 125mg and zinc 5mg... with the other 500mg Q/brom i will order d-hist jr.... oh yah...this fall was the first time i saw him pull hair in regard to alleries in the fall....the last to springs he did the same thing..... maybe this is my piece??? it's now 5pm and he sounds so conjested...more so than he's been Edited October 11, 2010 by Fixit Link to comment Share on other sites More sharing options...
thereishope Posted October 11, 2010 Report Share Posted October 11, 2010 (edited) Oh, I reread one of your posts, my son had some sawtooth without IVIG, but the bad setbacks didn't last long (not more than 3 days). Usually if it was more than 3 days, something was triggering it whether it be strep, allergies, virus, etc. The D-Hist Jr does have NAC in it. Not a lot, but has some. So if you order it, read the back of the bottle so you know how much to supplement it if you want more than that. Edited October 11, 2010 by Vickie Link to comment Share on other sites More sharing options...
Fixit Posted October 11, 2010 Author Report Share Posted October 11, 2010 is it possible that ds is more congested now than he was 3 hours ago???? he hasn't been outside since he came home....house is ALWAYS sealed tight... could it be the nac?...clearing things out.... his eyes are red like when you cry...around the outter rim... phasmid..suggested that might be a sign of sinus infection? i asked him if anything else was bothering him...he said no...of course i listed all possiblities... (if you miss one that's the one they go....yah that bothered me since 2 days ago ) again stonsils out 3 weeks/3 days ago Link to comment Share on other sites More sharing options...
thereishope Posted October 11, 2010 Report Share Posted October 11, 2010 NAC loosens mucus so it would make sense that he is coughing more since more drainage is able to occur. Link to comment Share on other sites More sharing options...
Fixit Posted October 11, 2010 Author Report Share Posted October 11, 2010 NAC loosens mucus so it would make sense that he is coughing more since more drainage is able to occur. thanks for getting back so fast!!!! almost sound likes he's going to choke ...really!!! Link to comment Share on other sites More sharing options...
thereishope Posted October 11, 2010 Report Share Posted October 11, 2010 (edited) I wonder if he does have a sinus infection! When you have a sinus infection, I've always been told to give something to loosen up the mucus since the swelling from the sinus infection prohibits the mucus from draining. Anyway, that drainage is good. Can he actually cough it up into a tissue so you can look at it? ps...you can get sinus infections from allergies too. Edited October 11, 2010 by Vickie Link to comment Share on other sites More sharing options...
Fixit Posted October 12, 2010 Author Report Share Posted October 12, 2010 I wonder if he does have a sinus infection! When you have a sinus infection, I've always been told to give something to loosen up the mucus since the swelling from the sinus infection prohibits the mucus from draining. Anyway, that drainage is good. Can he actually cough it up into a tissue so you can look at it? ps...you can get sinus infections from allergies too. quick replies woudl be great..getting ready for bed yah...i think i will be heading to doc.... giving benedryl would be counter productive right(dries it up) any suggestions for bed time...other than sleeping on a ton of pillows Link to comment Share on other sites More sharing options...
thereishope Posted October 12, 2010 Report Share Posted October 12, 2010 Sorry this isn't a quick reply, but yes, IF it is a sinus ifnection Benadryl won't help. Whne my son one, I was specfically told NOT to give him Benadryl. Hope your night went okay! Link to comment Share on other sites More sharing options...
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