tapiash

I am just curious how many children on this forum continue to have side effects 2nd IVIG, 3rd IVIG or do they eventually stop after the 1st one The side effects I am talking about are the fever, headache and vomiting.

Thanks for the information. How wonderful to be able to meet Dr. Cunningham and all her staff. I wonder how many kids with high Cam K have diagnosed Lyme? My son has High Cam K,anti lyso and Anti D1. Its amazing how he fits right in with research. everyday I still doubt I have made the right decision to teat PANDAS because there is no concrete eviddence. He is getting better, but still it is frustarting that there is no sound research to back up the reason behind him getting better.

Shirley, Can you clarify this? The way I am understanding it is...your doc doesn't want you to use the prednisone yet, and you want to do it anyway? Personally, I think I would listen to the doctor. I think I am probably wrong in this assumption (because of reading other posts by patient's of Dr. but...if prednisone suppresses your immune system, and you are trying to "reboot" the immune system with high dose IVIG....aren't they kind of contra-indicated? parents4eyes, Can you clarify "short one-time burst"? I don't think anyone will dispute the side effects of steroids after about a month of use. However, for us, we had great success (so far twice) with a month-long, tapering course with approx 8 months in between each treatment---I was told there really aren't any long-term effects of pred with this type of use. Can you point me in a direction that will educate me on the Long-term health risks of this type of use? I googled, and couldn't find much in this area... As for 20mg 2x week indefinitely that Shirley's doc is recommending...I would have fears of long term side effects then Thanks! My doctor wants me to use the steroids again and I dont. We have an IVIG scheduled so I wasn't sure if I should keep my appointment. The doctor suggested suggested for me not to do both. I hate that my doctor is so far away. when we had our consult, I just wanted to talk about IVIG. He told me we should see immediate results like we di with the steroid and thats when he said we would use the steroid for maintaining. We have had wonderful results on Steroids but I don't like the idea of using them again. We have only been off of them a month. Our IVIG is scheduled for Monday. I agree with the contradiction. My son starts school soon and I need him better.

Which do I do? IVIG makes more sense, right? It doesn't have long term side effects I don't know that much about steroids, but I believe it is dangerous to use them too frequently, and you cannot stay on them all the time. My daughter gets IVIG every 4 weeks and does not get side effects at all. Do you pre and post treat with steroids? Have the IVIG's been successful

Which do I do? IVIG makes more sense, right? It doesn't have long term side effects

My son had a great day today. We are on day 2 of the steroid. Im curious to see what tomorrow brings. It's amazing how well my son was dong on the steroid. Has your child had IVIG? Please let me know what your pharmacist has to say about the Pred. Have a great night.

My son had a great day. It was the first time in 3 weeks that he has not had a melt down. Im not sure if this is the result of IVIG or the prednisone our doctor started him on 2 days ago. Our doctor put him back on a low dose of steroid to help with his behaviors. He has had a very difficult time these past couple of weeks.We are scheduled next week for another IVIG. I don't know what to do. I don't want to take him off prednisone if is improving his symptoms but at the same time I don't want to miss the IVIG because maybe it's finally kicking in. I'm wondering if he can have both, low dose steroid and IVIG. Our doctor said steroid only but why not both? He starts school in 2 weeks and I don't want to mess things up.

Thanks so much for sharing. My son first IVIG dose was 2g. The next one will be 2g as well. Our doctor does not want us to do the IVIG while on steroids. Since we already have it scheduled and my doctor lives 100 miles away, I was just going to do it anyway. Do you think that's wrong? The last thing I want is for my son to be more susceptible to infections etc. The reason why he put him back on Pred. is because DS was pretty much symptom free while taking it and then we had IVIG and behaviors came back. (aggression,emotional,irritability). I wonder if some of the behaviors are a result of him being off of the antibiotics. He wont start them again until Monday. I'm so glad to hear your kiddos are showing improvements. How many months have they been receiving them and how long will they continue to have them? All of this is so overwhelming. I try to fix one thing and end up with a whole new set of problems.

That is such great news!! I pray he continues making progress daily.

I consulted with my doctor yesterday and this is how we are going to treat my son post IVIG. We had IVIG 3 weeks ago and initially we were scheduled for IVIG every 28 days. OCD and tics are pretty much non existent but we are still dealing with mood swings, irritability and language difficulties. Anyway, since DS had such great results on Prednisone, our doctor wants him to start taking them again. DS will have 20mg 2x a week. We will continue antibiotics 2x a weeks as well as 5Htt (mood stabilizer) and probiotics with yeast. Dr. said sometimes kids need maintaining after IVIG. He really sounds like he knows what he is doing but I'm not sure how I feel about this. We are scheduled for another IVIG a week from Monday and I do not know if I should keep my appointment. It is already scheduled. Has anyone else on this forum used Prednisone for maintaining? I really need some feedback.

Breastfed

I still see him. We actualy have phone consults. I have one with him tomorrow. We had IVIG a few weeks ago and now I am not sure what I am suppose to be doing.

Dr. Lin is great. We are from NM and drove to California to see him. We could not afford to fly to see Dr. K and the drive would have been double the time it is took us to get to Cali. This website is amazing and I wold not have known where to begin had it not been for others on this forum. I am glad you are seeing improvements.

It is a personal choice, and it is a very hard choice.My son had the flu mist October 2009. Two days later he woke up with uncontrollable eye blinks,later came motor tics, OCD and then anxiety. It took me months to put the two together. Our pediatrican suggested that my entire family not receive a flu shot or any type of nasal vaccine. I am not really clear on why this happens so if someone could please chime in that would be great. My pediatrician mentioned his brain working double time?? Does that sound right?

I agree. Regardless of what is causing the behavior children, PANDAS or not, need to learn there are consequences for their behavior. My son was being naughty one day and I sent him to his room. I told him it was not acceptable to treat others the way he did and he needs to stay in his room for thirty minutes (with nothing) and think of better ways to treat others. I feel if we do not discipline our children they may use their illness as a manipulative. As difficult as it is to see my son upset, I know in the future he will be a better person because of it.

According to my doctor,there is definitely a genetic component. My family has a history of autoimmune disorders (crohn's and fibermyalgia). This one of the first questions during our intake.

It could be firewalls or security?

So you are saying PANDAS doctors recommend antibiotics for at least 3 months. I guess I better call my doctor. He does not even know I took my son of. We are scheduled for another IVIG in 2 weeks but after reading your post, I feel a little better about it. Have you tried the clay and epsom salt baths? My son has never had a diagnosed strep infection. The Pandas started Dec 2008. He was really sick but no documented strep. All of his blood work was negative except the Cam K. Pandas is so complicated . If I had a choice, I think I would take bed wetting as opposed to rages and irritability. Thanks for sharing your IVIG experiences.

Wendy I do see a PANDAS/DAN doctor but he has been so busy. I emailed him again about he antibiotic and hopefully he will respond soon. I thought the antibiotic was for inflammation. There is so much info on this forum I start getting confused. I have some liquid silver. It is suppose to help with infection and immune system. It is created by Lindsey Duncan. I wonder if this is kind of like the natural antibiotic you were referring to. I will read up on the natural antibiotic. I thought herxing was associated with Lyme and turning back pages was PANDAS?

<br><br>This is us at our house too. I am sorry you are experiencing this as I know first hand how awful it is. dd8 had IVIG 3 weeeks ago and since she's doing so poorly, we are already scheduling her next one. This will finally be 1gm. The other two were less and we've been working our way up with our neurologist. Many things are much better like she can wear socks now, it is not so hard for her to get dressed in the mornings, she will take her pills without any resistance (usually), and she gets along with her sister about 50% of the time (instead of 10%). But she does not know what to eat but wants to eat constantly, she's quick to be emotional, irritated, irrational, unreasonable, she cries that she feels "pandas'y", has pain and "only feels really good when I'm in the water". It really is the only time she is truly happy, if she's in the pool.<br><br>I am worried about our next IVIG and don't know how long to wait after this one before getting another. I never thought I'd be worried about that since I waited so long to even get the first one. Anyway, reading the responses to your post to hopefully learn something myself. You are not alone, in case that helps.<br><br>Susan<br><br><br>Suzan<br><br>It really helps to know that others are right there with me. I wish it didn't have to be this way but we have each other and we will get through this one day at a time. My son has always been afraid of water but lately that is one place he is truly happy. He is growing a garden and when he is out picking vegetables he is pretty happy them too. He is pretty OCD with his garden but it is also therapeutic for him. When you mentioned socks I giggled because my son finally will wear white socks. For the longest time he would only wear black. His feet sweat a lot and the stink was unbearable at times.

My son is not currently on antibiotics. I am going to start him on Omega 3 tomorrow. I really didn't see a difference when he was on and or off. Its the steroid thjat made all the difference in the world. he took a 4 week burst. Its interesting about the clay, I have never even heard such a thing. It is amazing what I have learned since this PANDAS came into our lives. We are scheduled for another IVIG in 2 weeks. I wonder why my doctor ordered monthly. I called him but still have not heard back. I do not even know if the IVIG is going to be successful and we are already scheduled for another. Every night when I go to bed I thank God for everyone on this forum. I would be lost without you. Well, I am still kinda lost but that is just me. Does IVIG effect appetite. I cannot get my son to eat a whole lot of anything. What kind of results does the clay have on the body? He is soo excited to try it. lol.

It makes complete sense. Can you explain to me what Bentonite is? Where can I buy it? Us rural folks do not have access to whole foods or organics markets so hopefully I can get it online. Thanks for your help!

Thank You, LLM. That is so encouraging to hear. I appreciate the encouragement. For some reason I believed we would not "turn back any pages" I wanted to try PEX but our doctor wanted IVIG and I trusted him. My ds was on Zithro prior to IVIg but I took my son off because it didn't seem like it was helping. My son was acting the same on and off. I am going to try Motrin. Oh, the irribility is what drives me crazy. We cant even look at him without taking offense. You are absolutely right, steroid recovery is so much easier. We saw changes immediately. I too am holding my breath and praying for a long term cue, but at the same time I'm not too convinced IVIG is a permanent cure.

Did you do a high dose, at least 1.5g per kg? We had 2g