AmberM

I appreciate all the responses. It's weird because both people expressing their concerns are parents of PANDAS kids and they've both done IVIG. But you guys are right, they should be able to show me some studies to back up their opinions. I talked to the nurse at the clinic as well yesterday and she said she has personally done IVIG on at least 6 kids with PANDAS under the age of 4 and only saw positives. I feel confident. And it's true, leaving my dd untreated would only lead us down the road of destruction and despair. Thanks for backing me up, I needed that.

I was wondering if anyone could give a link to any info specifying why IVIG would be dangerous or not recommended for children under the age of 4? We are getting ready to do our second IVIG with my 3 1/2 yr old dd and I've had a couple of friends voicing their concerns but I can't find anything to back up their concerns. We were only able to get half of the treatment done last month due to my dd's horribly tiny veins but we have only seen positives so far and absolutely nothing that seemed to be reason for concern. Any help or advice would be appreciated. thanks, Amber

There is a place here in California that is raising Camels for the purpose of healing people with gut issues etc. We are on the list. The way they get around the whole legality is that you have to buy the camel and then they will care for it and keep it on their property.It's called a "camel share". I inquired over a year ago and still have not heard anything though. The problem with Camels is that they are very shy about letting down their milk apparently and they will only do it if a baby is latched on. They also stay pregnant for 13mos. I got the whole lecture from the owners of the project. I guess they were getting an overabundance of male camels and not enough females. I's a really exciting idea though. http://www.cameldairy.com/CAMEL_MILK.html

Thanks for all of the concern. The nurse came back on Monday and tried again to find a vein with no luck. The company sent their two best pediatric nurses. The gammagard is sitting in my fridge right now...... pretty disappointing to say the least. As one last ditch effort, they wanted me to go down to the E.R. tomorow morning to have a line put in. I guess the hospitals have infrared machines to find veins. We've decided it would be too traumatic for my dd. When I talked to the people in the E.R. on the phone today, they didn't seem to understand PANDAS or autism and I just had visions of us waiting for hrs and then getting back there and having a nurse come over and manhandle my dd and possibly not find a vein. I found a company in New York that will rent one of those infrared vein trackers so I think we're going to go ahead a rent one for the next IVIG. I can take my dd to the hyperbarics clinic and they said they would use a little versed to sedate her and then the nurse can track the vein and do the infusion there. I think that will be the best bet for next month. It doesn't seem to be an issue of hydration with my dd, her veins are just tiny and completely invisible. I don't know how she got dealt such a bad hand. thanks again for all the support. -Amber

thanks for all the kind words of encouragement and support. I feel a little better today after sleeping a little. We did use the emla cream but I don't think it was on long enough. The first day, it was on much longer and she even watched the needle go in without anxiety. Today she is acting like nothing happened so hopefully most of the trauma is on my husband and I. I will need to just follow dd around with a syringe of water all day and make sure she gets a decent amount down. I bought a heat mit as well to try out. I'm also planning to build a little splint to tape her arm down..... I've seen this at the clinic my dd got hyperbarics at. If I can just prevent her from wiggling her wrist, I think we'll be ok. I can take it off once all the tape is down. Can you tell I've been up all night strategizing? I've got to get this IVIG into her and get her better! Thanks again......I needed to hear from people who have "been there and done that." -Amber

My 3yr old dd was scheduled to have her first IVIG yesterday and today. Everything went really well yesterday and she received half of the 24grams of medication. Today went horrible and after 3 hrs and 9 sticks, the nurse was unable to successfully get a vein. My dd has horribly tiny veins and we've struggled with blood draws in the past. We've had so many failed attempts but never anything this traumatic. I'm feeling really discouraged right now and concerned because she only received half of the treatment. The nurse isn't coming back until Monday so if that is successful, she will have received the first half on friday and the second half on monday. When I called our dr. he really didn't have anything to say. I asked him if the 12 grams she received would be better than nothing and he said he didn't know. I was wondering if this has happened to anyone before? Would the spacing between doses mess everything up? It's almost like getting two low dose treatments. I've read on here that low dose is not good for PANDAS. The nurse that the company sent out is their best pediatric nurse. They said if he couldn't get the vein, they wouldn't be able to help us. I do think he was good but those darn i.v.'s are so flimsy. If she even flinched a tiny bit, the whole thing would shift and he would have to start over. I've never been so stressed and upset in my life. Our dr. prescribed vallium but that stuff didn't do anything to calm her nerves. Any help would be appreciated......I'm feeling totally deflated and depressed. -Amber

Dr. Sears was the first DAN! I took my dd to. He's very nice but I didn't get the feeling that he knows a lot about PANDAS. He ran ASO/ ANTi d-nase and they were fine so declared dd was fine. She's a PITANDS kiddo though. I went to the TACA meeting that he spoke at in Cali and I liked the talk but felt it really catered to the families that were just starting out. It almost sounded too easy to recover a kid. Maybe I'm just jaded..... we've been through a lot lately. He does know a lot about vaccines though. -Amber

We did 80 hrs of hard chamber hyperbarics with my then 2yr old daughter. We did it before she was dx'd with PANDAS and we did see quite a few gains. I'm hoping to try it again after we get some IVIG under our belt. Our pedi gave us an rx for LDN but we haven't started it yet because my dd's sleep pattern is so bad that I'm afraid she'll wake when I apply the cream at night. She's 3yrs old and I know of several other young children using it. We also use curcumin for inflammation. It seems to really help my dd. The brand we use is Longvida.

My 3yr old goes insane if her food gets broken or cut up at all. We are gluten free and a lot of the crackers and bars are super crumbly so it makes for a very stressful situation. We just finished a 30 day steroid taper and she ate nothing but potato chips and apple sauce for the month. It was awful. I was really hoping the steroids would help with her feeding issues but they actually got worse. I think it was due to her reflux flaring. -Amber

[i couldn't get the link to open. We were planning to do the infusion over one day.... is that a really bad idea? I'm worried about trying to keep my dd busy and she also has horrible veins. I worry that the nurse won't be able to find a vein on the second day and we'll only get half the therapy. We've been turned away from blood draws several times. -Amber quote name=browneyesmom' timestamp='1297908155' post='103794] I saw this on the web recently and sent this to another mom who is having trouble getting IVIG approval - click on the link and scroll down - near the bottom, you should see info something like this: * GAMMAGARD Therapy Coding Guide * GAMMAGARD Therapy Coding Guide A handy reference sheet with suggested codes for GAMMAGARD LIQUID therapy, GAMMAGARD S/D therapy, and immune system disorders. https://webforms.bax...mune/order.jspa As for dosage, my dd11 had 2g/kg of Gammunex over a two day period in patient at Christmas when she was in severe exacerbation. Dr. B did 1.5g/kg Gammugard (same thing as Gammunex) three weeks ago and I understand we will be doing that again in one week at his infusion center - over a two day period. My dd11 has CVID (Common Variable Immune Deficiency) also, so her case may be different, but my understanding is that 1.5g - 2g / kg is commonly used for IVIG in PANDAS kids.

Amy, thanks for the info. Were you able to see a lot of progress with just one IVIG for your son? My dd doesn't have tics. Her main issues are emotional lability, rages, anxiety, and ocd. She also lost all language at onset around 18mos of age. Because of the timing, everyone assumed autism so we've been treating it that way until recently when a dr. told us about PANDAS. We're not sure now if it's both or just PANDAS. I would love to travel to Sonoma for IVIG but we're in such a bad situation right now. My dd will only sleep in her own crib in her own room. We also have a 6mos old baby that I'm nursing and dd wants nothing to do with him at this point. The car ride would be insane. I have big dreams of taking a trip with her though.......hopefully with some healing. -Amber

I'm sorry you're going through such a rough time. I'm at the point that I'm willing to do just about anything to get some relief and it sounds like you're in the same boat. I just wanted to say that the first 9 days of our steroid taper were insane. My dd turned into the incredible hulk and just raged out of control. She didn't eat anything other that potato chips and applesauce for the first two weeks either. So just be prepared for insanity. But after those awful first days, things got really nice. Everyone around us was commenting on dd's progress. We stopped the steroids a little over a week ago and we're already seeing regression.

We just finished a 30 day steroid taper with my 3 1/2 yr old dd and saw some really big gains. She went from a 12 mos cognitive level to a 26 mos level in 2 weeks! OCD came down with certain behaviors but not all. Anxiety came down quite a bit as well. Her food related anxiety/ocd did not improve at all. Overall, we saw at least 50% improvement. We've decided to proceed with IVIG in hopes of seeing more progress. Our insurance denied us..... big surprise. Our DAN! recommended doing 3 infusions, each one 30 days apart at 1.5 mgs per kilo of body weight. I didn't think we could afford to do all 3 infusions so told the DAN! we could probably afford 2. I talked to the infusion center today and they said he sent the rx for 2mgs per kilo of body weight so the price was much higher than the estimate they quoted me. I thought it might have been a mistake and of course he's out for the day. I don't know if he upped the dose since we're only doing 2 infusions or what. I was wondering if other people are using this high of a dose? I'm concerned about the side effects. Any help would be appreciated. -Amber

We've been battling c. diff with my dd for 2 yrs now. We used to do cycles of flagyl but as soon as we stopped it, the clostridia would come right back. In between cycles, we would give 4 culturrelle caps a day and kyolic garlic. It would still come back though. We even did hyperbaric oxygen therapy and that worked great but a very expensive therapy if that's the only reason you're trying it. So we've been using vancomycin straight for the last 6mos and have seen amazing results. The stuff is outrageously expensive though, even through our insurance. If you're only doing short term spurts of vanco, you need to follow it up with a second round because the bacteria is spore forming. You may already know that though. We used to do 10 days on, 5 days off to let the spores hatch, then another 10 days on. -Amber

We've been using vanco for a couple of months straight now and have seen a huge reduction in sleep disturbances. My dd struggles with clostridia and it really messes with her behavior.