peglem Posted May 13, 2010 Report Posted May 13, 2010 Today was more difficult than our last 2(low dose) IVIGs, not because of the dose, but because Allie is not in as good a place as she was then. It took us 15 minutes just to get her in the van to go this morning-she was self injurious and just refusing. I had to throw an object she was obsessing over to the far side of the van to get her in! Once the IV was in, the rest of the day went okay. I just know we'll have a struggle tomorrow, too. And probably it won't work to throw in an obsessive object! We'll get it done. The staff is wonderful and supportive. Gave us a # to call when we leave the house, so they can send down to the pharmacy for the gammagard and it'll be ready to go when we get there. We have an appointment with her pediatrician on Monday- possibly going back on rifampin for awhile, but need to get the BM testing back 1st.
Megs_Mom Posted May 13, 2010 Report Posted May 13, 2010 So glad you made it through today - will be thinking of you tomorrow! You always make me smile, even when you are telling about an awful event. I laughed at the idea of tossing an obsessive object into the car to get her to go. You are the best mom.
Mary M Posted May 13, 2010 Report Posted May 13, 2010 Today was more difficult than our last 2(low dose) IVIGs, not because of the dose, but because Allie is not in as good a place as she was then. It took us 15 minutes just to get her in the van to go this morning-she was self injurious and just refusing. I had to throw an object she was obsessing over to the far side of the van to get her in! Once the IV was in, the rest of the day went okay. I just know we'll have a struggle tomorrow, too. And probably it won't work to throw in an obsessive object! We'll get it done. The staff is wonderful and supportive. Gave us a # to call when we leave the house, so they can send down to the pharmacy for the gammagard and it'll be ready to go when we get there. We have an appointment with her pediatrician on Monday- possibly going back on rifampin for awhile, but need to get the BM testing back 1st. I appreciate reading your post because I have fears about my dd struggling with going for the IVIG also. I will send positive thoughts your way for a restful night and an easy day tomorrow. We have our consult with Dr K 2 weeks from today. It took both my dh and myself to get her to the lab today to get the Cunningham test drawn. Do the docs who do IVIG ever use versed or something similar to calm the pt in order to get teh IVIG done?
coco Posted May 13, 2010 Report Posted May 13, 2010 You're a great, Mom...your strength is amazing! I am so hopeful this will help Allie!!
MomWithOCDSon Posted May 13, 2010 Report Posted May 13, 2010 One day down, one to go! You KNOW you'll make it through . . . every post I've read of yours puts your strength, wit and resolve on full display! Hang in there and know that you're probably more than halfway to the finish line! All the best tomorrow!
peglem Posted May 13, 2010 Author Report Posted May 13, 2010 Thanks, everyone! Gosh, you make me sound so special! Maybe dealing all these years w/ this stuff has made me good at it? It took both my dh and myself to get her to the lab today to get the Cunningham test drawn. Do the docs who do IVIG ever use versed or something similar to calm the pt in order to get teh IVIG done? My daughter was on 30mg! of valium this morning when we had the tussle over getting in the van! The immuno who ordered Allie's IVIG told us that her pediatrician would have to be in charge of pre-medication. Since we already have an "as needed" valium rx that we used to fly her to DC and back- we just use the same dosing strategy that got her on the plane! And we use emla cream for the needle stick. It takes 10mg of valium to do a blood draw, unless she's in exacerbation, then it takes 20. I don't like that I've had to resort to this, but, if she didn't need the valium, she also wouldn't need these procedures that she takes it to get through.
melanie Posted May 13, 2010 Report Posted May 13, 2010 Thanks, everyone! Gosh, you make me sound so special! Maybe dealing all these years w/ this stuff has made me good at it? It took both my dh and myself to get her to the lab today to get the Cunningham test drawn. Do the docs who do IVIG ever use versed or something similar to calm the pt in order to get teh IVIG done? My daughter was on 30mg! of valium this morning when we had the tussle over getting in the van! The immuno who ordered Allie's IVIG told us that her pediatrician would have to be in charge of pre-medication. Since we already have an "as needed" valium rx that we used to fly her to DC and back- we just use the same dosing strategy that got her on the plane! And we use emla cream for the needle stick. It takes 10mg of valium to do a blood draw, unless she's in exacerbation, then it takes 20. I don't like that I've had to resort to this, but, if she didn't need the valium, she also wouldn't need these procedures that she takes it to get through. Good luck today Peg,tell allie were thinking about her.Dannys having #6 tomorrow Melanie
peglem Posted May 13, 2010 Author Report Posted May 13, 2010 Day2 went very well. The nurses where we go are so good with my daughter! One of them mentioned that they have been getting several PANDAS patients from Allie's immunologist and had done some research on PANDAS because of that. They asked about Allie's symptoms and when they started. I explained to them about all that and told them about Dr. Cunningham's research and gave them the refresheverything/PANDAS address and asked them to vote for us!
kimballot Posted May 13, 2010 Report Posted May 13, 2010 Speaking of "refresh everything"... YOU are refreshing. It is so great to read your posts and how you just keep moving forward. Good job with the valium... why risk not getting her there? I am so hoping that this helps to get Allie back to a good place for you. Please keep us posted!
peglem Posted May 14, 2010 Author Report Posted May 14, 2010 We've only been home @ 3 hours, and I have the sinking feeling that the easiest part is behind us and we indeed, as others before us, are in for a bumpy road to healing. The past 2 hours have been a series of "fixating" on items that for some reason upset her terribly. She clutches the object tightly in her hand while she totally freaks out and smashes her knee into her face. If you can manage to get the offending object away from her (with minimal injury to yourself), and hang on for 10 minutes or so, she can calm down. But then the whole thing starts over about 10 minutes later with a different object. I'm so tired. I need to keep reminding myself...this means its working, this means its working, this means its working....I hope I can send her to school tomorrow, I hope I can send her to schoo....whoops! this means its working....
melanie Posted May 14, 2010 Report Posted May 14, 2010 Hate to laugh at this Peg but that was funny,and it is working. Glad the treatment is done we have our tomorrow Melanie
peglem Posted May 14, 2010 Author Report Posted May 14, 2010 Hate to laugh at this Peg but that was funny,and it is working. Glad the treatment is done we have our tomorrow Melanie Good luck with it Melanie- happy for you....and sorry, too!
peglem Posted May 16, 2010 Author Report Posted May 16, 2010 Well, its only been 2 days since we completed the 1st high dose IVIG. I expected really bad...and we've had a bit of bad stuff, but overall, this is much better than she reacted after the 2nd low dose IVIG. I can keep her pretty even tempered w/ ibuprofen, tylenol, and valerian root, as long as she gets something to eat @ every half hours. We've had several outbursts of aggression, but they are short. I can handle this!
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