momaine

We went for a recheck with Dr. B on Thursday and Louise said that my dd would be havinig her second IVIG with two other girls who had it together before and who had exchanged email addresses. I would love to share those email addresses with my dd13 who will be there the next time. I think it would be nice for them to be able to get to know something about each other before hand. Dd made a lot of progress after the first ivig. Still have one catagory of issues hanging on and we're hoping the next ivig will hasten her recovery. Angela

Breastfed 16 months, exclusively.

even if it is just for your own peace of mind, I would do a strep throat culture and a blood draw to check ASO and antidnase. That's just me. Sounds like it could possibly be PANDAS. You would want to catch it early. Angela

Dr. T only prescribed 5 or 6 day courses for my dd when she was under his care. It would take 10-12 days to kick in and she'd get 5-10 days of relief from it. We did that monthly for 3 months, I think. It was not enough to sustain relief. Dr. B prescribed a 20 day taper (started with 40mg, ended up with 10mg) which he then extended at my requets to get us up to the IVIG date. (20 more days) The extension was only 10mg every other day but it brought her great relief coming on the end of the taper. Angela

my 13yo 100lb dd did 40mg 6 days, 30mg 5 days, 20 for 5 days, 10 for 5 days then 10mg for every other day for 20 more days. It helped her TREMENDOUSLY. No noticable side effects except her face got puffy. Angela

One of the best tools I've used to help me evaluate how things are going has been to keep track of behaviors on a spread sheet. I got the idea on this forum and it works well. I list each behavior on the side then each day I assign a number to each behavior. 1-3 is there, but barely, not interfering with life too much 4-6 is prounounced, not constant, interfering with life, but not disabling 7-9 is huge impact, disabling. If you use excel, you can graph it afterwards and see the ups and downs. It's really helpful to look back on. I have 13 behaviors listed. In February when I started charting it, she had been on antibiotics for 3 months and was having prednisone bursts. During prednisone, she would get a total number often in the teens or low twenties. Those were our good days. On difficult days while on antibiotics but not prednisone, she would hit 50's, 60's and 70's. If I had done it last fall without antibiotics she would have been close to 100 most days. She is now 4.5 weeks post ivig and the last two days have been more difficult than the previous week. (her period is also due) But the last two days were only in the low teens. Though the last two days have FELT difficult to me, its nice to put it into perspective because now a bad day is what used to be a really good day. When I'm feeling impatient, I need to remember that.

Thank you! Angela

On Facebook on the Saving Sammy site, in response to me saying that 37% of children with PANDAS did not show a rise in either ASo or AntiDnase titers, according to Swedo, I got the following response from Beth M. "That is not correct information about Dr. Swedo and 37%. She specifically disputes the figure. Dr. Swedo's statement was that 75% to 78% of children with strep will have their ASO titer rise, and in 90% at least one of the anti-streptococcal titers will rise. I am going to post the Autism One email blast in full so that the information is out there again. Susan Larsen's point is covered." I would like to be able to point out the study that showed this statistic. Can you help me with that? I've searched the Latitudes site but I'm not able to find it and I'm having trouble with this new format to just look up things by the author of the posts. I can get to some of them but can't seem to find older ones. Thanks for your help. Angela

There is an awful lot on that web site that goes against all of the things we discuss here as truths. I hope it doesn't do more harm than good. Angela

Did you do a high dose, at least 1.5g per kg?

3 weeks before I was sure. from 3-4 weeks she made great gains. But before the 3 week mark she was also less emotionally unbalanced. Hang in there. Angela

My dd took both prednisone and Advil under a doctor's care for weeks with no problem. Always give both of those medications with food to prevent any stomach issues. Angela

I don't know what the future will bring but our dd is 4 weeks post ivig and doing really well. I just hope it lasts. Angela

Today was amazing. She babysat for 5 hours and i left her home with the kids for several hours. she did many chores to earn some money, including going down cellar alone to clean the cat box alone. she has been totally independent today except for brushing her teeth, which she wanted me to watch. Now she is on her pc, which she couldn't do two months ago becasue she could only repeat with the mouse. and her friend is coming over later. I am so elated today. I hope tonight goes well too. she appologized for yesterday and told me she had no trouble sleeping alone last night and plans to sleep alone from now on as long as things stay like they are. *little happy dance....with trepidation Angela

Last fall my dd could not dress herself, shower, or brush her teeth. She could not concentrate to play a game of cards when Grammy came to visit. She often wished aloud that she was dead. Antibiotics helped for a time. Prednisone was great when combined with the antibiotics and Advil. I couldn't even stop the advil during the prednisone taper because she would fall apart. We are 4 weeks post ivig. She is off Augmentin but still on Zith. She is off prednisone for 4 weeks, off Advil for 4 weeks. Still on 40mg celexa, and something to fight yeast, as well as singulair for allergies. She has kept herself VERY busy these last few weeks. There have only been a few days that she has slept home without a friend over all day long and all night. That makes it hard to see exactly where she is because she is always better around people. Her worst symptoms were reapeating things (or having urge to repeate so doing nothing) and asking reassurance questions. (worst times, all day long...every few seconds or minutes) She has not asked a reassurance question in days. There have been a few when the friends have not been around but like one or two during the few hours that freinds weren't here. (and then she let it go) She went to sleep in her own room last night with NO friends over. (first time in more than a year, if I could guess) she was mad at me because I was frustrated with her because she's been acting like a teenager lately. but when I left, she did not call me back. She did not cry and scream that she couldn't do it and beg me to come back. She covered herself up (peeked in this morning and she was covered up) She let me turn the light off. The reason she has been grouchy with me lately is becasue she thinks I treat her like she is stupid or a baby. I am doing all the same things I have done for the last year, reminding her to get her stuff, to not forget to something, to brush her teeth, to take her medication. I don't say it once, I tell her agaian and again because she never used to remember until I got after her. It's hard to stop a habit that you've had for a year. I plan to talk to her about it. Now I remind her about something and she gets rude about it like I think she isn't capable. She wasn't capable 4 weeks ago. She is still repeating things when people are not around. walking in a room, brushing her teeth, walking in the house or through the door, doing most anything, really. But only for a few minutes then she gets through it. I still watch her with trepidation. I wonder if it will last or begin to go backwards or even just stall out where she is. She wants to sign up for classes at the high school this year. She has been homeschooled all her life. I'm not against it..but I fear that if she back slides and cannot dress herself for school that it will turn into a battle. I hate having to have her anywhere at a specific time because it adds stress to my already stressful life. But I hope she is well enough to try it. so far, so good. I'm still scared. But very thankful. Angela

Good luck!

My dd also got PANDAS in the late summer/early fall of 2006. Hmmmm... Angela

Awesome Brandy! I recently read on Dr. K's site that in children under age ten, results from the IVIG are seen in days, while kids over age 10, it takes weeks, often seeing progress around the 3rd week post IVIG. Angela

I too thought a high C3d was indicative of an autoimmune process going on. If you google it, it says autoimmnue, commonly elevated in Lupus and another autoimmune disorder. (can't remember which one off the to of my head) I'm certain that Dr. B told me that the elevated number would help get IVIG coverage. He never said anything about IVIG being less effective in people with elevated C3d. Also, my dd has had one ivig with Dr. B 3 weeks ago and is improving despit eher elevated C3D. Angela

From the time he got our last blood test results, it was less than a week before it was approved. I think it was almost a month before he could get her in though. (then they called back and could have gotten her a week earlier, but I couldn't make it) Angela

Best of luck to you! Angela

my 100lb dd had 40mg prednisone and 400mg motrin on each day of infusion and had NO side effects on those days. Good luck! Angela

Dr. B allowed my 100lb 13 yo dd to be on prednisone the 20 days leading up to ivig at 10mg every other day after I asked specifically if she could continue on it as her life goes from ###### without prednisone to bearable while on prednisone and I just couldn't bear to watch her slide backwards again. This kid has been through ###### and back. He also gave her 40mg prophylactically on the days she had ivig with a short taper afterwards. (30mg the following day and 20mg the day after that) He never mentioned that the IVIG would be any less successful having done that. During the month leading up to IVIG while on prednisone, her facial motor tic lessened drastically. Angela

I can't say enough about how glad I am that Dr. B gave my dd prednisone prophylactially to prevent a headache. She had NO symptoms whatsoever until the second day after the IVIG and then it was only a headache that went away with Advil. She had 40mg each day of the ivig and then 30 the following day, the 20 the day after that. It was on the 20 day that she got her first headache. She got a head ache each day after that until day 6, so I know the prednisone helped. Advil took care of those headaches for the most part. Angela

I thought I'd share a brief update since I have a moment. It's been 2 weeks and 3 days since the completion of dd's first 1.5g/kg ivig with Dr. B. After her IVIG we stopped Augmentin, stopped Prednisone 2 days later, and stopped giving Advil daily. She is still on 500mg Zith per day, Singulair, Diflucan, and 40mg Celexa. (as well as probiotics and some vitamins) We have kept dd VERY busy since coming home from her IVIG. She always does better with other people around so its sometimes hard to know exactly how she is doing until we are alone, which hasn't been often. Some things worsened right after she had the IVIG. She has walking issues like Sammy Maloney and those worsened as well as her need to repeat physical things. Her verbal repetitions however, have eased by probably 60%. One thing about my dd's symptoms however, is that they have always morphed. So, I'm not positive if this is just a change of symptoms or an improvement, though if I had to bet money, I'd put in on improvement. (trying not to jinx us) I haven't been journaling, which I should be, but I realized last night when she asked two reassurance quesetions quietly in front of company, that she had not asked any reassurance questions for at least a few days. (this has been her worst symptom by far and one that she still did quietly even when she had company if they stayed for an extended period) Bedtime on the days that we have not had overnight company have continued to be somewhat challenging (repeating walking in room, getting in bed, needs me to cover her up multiple times), however, the amount of reassuance questions she asks at bedtime is down significantly. (except for one night two nights ago) She had one night a couple nights ago where she went to sleep quickly and peacefully without asking any reassurance questions and with a peaceful look on her face. (Best night since probably early last summer) Typically at bedtime she struggles the most with reassurance questions and facial motor tics. The facial motor tics had lessened to almost gone in the month before IVIG when she was on prednisone for most of the month. Those have not returned except very occasionally when she is very anxious. One of the biggest changes I have noticed though, is that her frustration level is down a lot. Even thought she is repeating more and having more trouble walking, she is less frustrated and angry about it. She also takes it better when I refuse to participate in some of her rituals. If I had refused to repeat something for her before (like hand her a drink twice instead of just once), she would sometimes on a bad day pitch a huge fit and cry and sometimes rage on the really bad days and there was no reasoning with her. It was so out of character and so out of context. She has been really stable emotionally since the IVIG with a normal reaction to her frustration. When I've asked her if she is feeling any different, up until yesterday she said she was worse, even though I feel I've seen some positive changes. But yesterday when I asked her quietly (she had company) she said she felt like she was doing a little better. I read on Dr. K's website, that kids over the age of ten, usually see the most improvement around week 3 post IVIG. I'm hoping that is the case for my dd as well but I'll also be satisfied with slow and steady improvement, if that is what we get. I'm very happy that we went ahead with the IVIG. No regrets so far. We took a friend with us for the IVIG and I'd recommend it to anyone whose child does better in the presence of company. She did so well that the nurses had to ask me privately what her symptoms were because she seemed normal to them. If they had seen her last fall and this last winter when she couldn't shower or dress herself or brush her teeth without crying and raging because the urge to repeat was so strong, they wouldn't have recognized her. I hope that is behind us for good!