Stephanie2 Posted September 16, 2010 Report Share Posted September 16, 2010 Aye yi yi!! Horrible! Also, if you suspect strep go get some Olive Leaf Extract or Oil of Oregano. I have been able to pull my 5yo out of the worst of exacerbations temporarily with that stuff while waiting to get abx. For OLE I use Gaia brand, 500 mg 3 times a day (may want to use more for your daughter), and Oil of Oregano I use Oreganol brand, 2 drops, 3 times a day (again you may need more). I feel for you and sorry about the advice part...I'm not a good listener!! LOL! Link to comment Share on other sites More sharing options...
trggirl Posted September 16, 2010 Report Share Posted September 16, 2010 I'm so sorry. The medical system can be so frustrating. Praying for both of you. Link to comment Share on other sites More sharing options...
peglem Posted September 16, 2010 Author Report Share Posted September 16, 2010 Next IVIG is the 30th. It will be very difficult if she is like she is now! Link to comment Share on other sites More sharing options...
dut Posted September 16, 2010 Report Share Posted September 16, 2010 Hi - I don't suppose there are any refills at pharmacies that you may have forgotten about.. would it be worth a call? My kids have had so much that I forget what they have left on unfilled scripts unless I ask the pharm.. good luck. Link to comment Share on other sites More sharing options...
matis_mom Posted September 16, 2010 Report Share Posted September 16, 2010 (edited) I would be so mad! How can they do that? I think I would just bring up the words "law-suit" or "malpractice" and see what kind of reaction I get I think leaving someone with positive bloodwork untreated over the weekend is criminal! I know you didn't ask for advise, but I would insist. Oh, no, no, the labs were only ordered to check liver and kidney function and to rule out thyroid problems- to make sure it would be safe to use the rx. She did not have positive labs for illness (actually the opposite). Since we are on IVIG every 4 weeks+ zithromax, its really not possible to get reliable "check for disease" labs. And really, I so appreciate that her pediatrician has been so willing to do what it takes to treat her (even though his colleagues do not approve) I would never, ever sue or even threaten to sue. So sorry, I misunderstood. I thought you had positive labs for infection and the other docs were playing chicken on you! So your regular doc was on board with prescribing just based on increased symptoms, but of course no one else in the practice gets it. My "clever" strategy would be the worst thing to do! Sorry again! Hopefully with motrin and maybe some natural antibiotics you can keep her stable until your dd (dear doctor!) comes back. If you want to try Oil of Oregano, you can put it into veggie caps so it doesn't taste so awful. Praying for your family! The crying must be heartbreaking Edited September 16, 2010 by mati's mom Link to comment Share on other sites More sharing options...
kimballot Posted September 16, 2010 Report Share Posted September 16, 2010 Peg - I am feeling for you! Have you tried valerian root or 5HTP... I think you had mentioned that one or both of those helped you in the past. This is why we NEED to get more PANDAS docs! Link to comment Share on other sites More sharing options...
peglem Posted September 16, 2010 Author Report Share Posted September 16, 2010 Peg - I am feeling for you! Have you tried valerian root or 5HTP... I think you had mentioned that one or both of those helped you in the past. This is why we NEED to get more PANDAS docs! Allie gets valerian every night at bedtime, and we've not had stellar results with 5HTP, so have dropped it (w/ everything else she takes!). I do have scrips for both valium and ativan which help some. I try to use them only when she's up against a known stressor, but have been using them more lately. I will get through this fine- been there, done that so many times. I'm just a little disappointed that we're not getting the help sooner. Thanks for all your prayers, support and sympathy. You guys ROCK! Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted September 16, 2010 Report Share Posted September 16, 2010 I am so sorry! The pain with this illness is still so incredible to me. We had a really rough time with monthly IVIG's, but I know every case is so different. Have you ever thought of doing the high dose IVIG's every 12 weeks instead? Elizabeth Link to comment Share on other sites More sharing options...
peglem Posted September 16, 2010 Author Report Share Posted September 16, 2010 I am so sorry! The pain with this illness is still so incredible to me. We had a really rough time with monthly IVIG's, but I know every case is so different. Have you ever thought of doing the high dose IVIG's every 12 weeks instead? Elizabeth We're doing 1.5g/kg every 4 weeks. But, doesn't the donor IgG last the same amount of time regardless of how much of it is infused? She had a port installed last month, which has made the hookup much easier. Its the anxiety over getting past the elevators that seems to be the biggest challenge now. Once we get the infusion going, she is kept entertained and is waited on hand and foot, and she gets a special store trip that day after the infusion...I think she has a pretty good time! Its like she's queen for the day. Link to comment Share on other sites More sharing options...
laure Posted September 16, 2010 Report Share Posted September 16, 2010 Hi Peg, Sorry for your sad and frustrating story. I have been there already as well. My daughter was diagnosed in July, and after 2 weeks of improvement on amox, the doctors in our practice wouldn't treat anymore unless she had a sore throat. OCD was still present, although she improved about 60% from her initial overnight exorcist-like behavior. I bailed on that idea, no way am I going to doctors who know less about this condition than I do...don't get me wrong, I really respect a good, thoughtful, diagnostic doctor, who can steer us towards the healthiest and least damaging path. Right now I am most worried about emotional issues/depression in my 9 year old. I now have a healthy supply of abx I purchased online without a prescription, thank God. We are waiting for first appt with Dr. B in 13 days (yes counting!) After that I am stashing this stuff for future use, because, while I wouldn't want to be self-prescribing for the long run, I have no problem doing it for a few days/weeks. Good luck! Link to comment Share on other sites More sharing options...
Fixit Posted September 16, 2010 Report Share Posted September 16, 2010 I WILL SO PRAY FOR YOU!!!!! Link to comment Share on other sites More sharing options...
thereishope Posted September 16, 2010 Report Share Posted September 16, 2010 (edited) Like everyone else has said, I'm sorry you're going through this! When you think back to when the ramping of symptoms started, can you think of anything that changed or can be seen as a possible trigger? How soon did she begin to decline after her last IVIG? Have you asked her school if strep has been in her room to their knowledge? Prayers being sent your way. Please keep us updated. Edited September 16, 2010 by Vickie Link to comment Share on other sites More sharing options...
peglem Posted September 16, 2010 Author Report Share Posted September 16, 2010 Like everyone else has said, I'm sorry you're going through this! When you think back to when the ramping of symptoms started, can you think of anything that changed or can be seen as a possible trigger? How soon did she begin to decline after her last IVIG? Have you asked her school if strep has been in her room to their knowledge? Prayers being sent your way. Please keep us updated. She started a slight decline @ a week before her 9/02 IVIG, but she was also premenstrual at that time, so I was waiting to see if the IVIG would help, or if it was just PMS. She was a bit improved after the IVIG, for about a week (and did get that Aunty Flo visit). Then started a slow decline...and we got a note from school about that time that somebody had gotten strep. So there are just a lot of variables. But also, we've done the rifampin/augmentin treatment 2X before, both with great results that were sustained for about 3 months. So, I'm wondering if we have some slow growing, intracellular pathogen that gets knocked for a loop with this treatment, but is not completely taken out, so that it grows back to symptom-producing strength in about 3 months. We'll see what happens with this round- and 3 months later. Link to comment Share on other sites More sharing options...
melanie Posted September 16, 2010 Report Share Posted September 16, 2010 Peg Does she get solimedrol with her iVs Link to comment Share on other sites More sharing options...
RNmom Posted September 16, 2010 Report Share Posted September 16, 2010 (edited) I will definitely pray for your daughter. I am so sorry that that this is happening. Please let us know how it works out... Edited September 16, 2010 by RNmom Link to comment Share on other sites More sharing options...
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