tapiash

My DS had IVIG10 days ago. Lately he is is very whiny,inpatient and absolutely will not share with his sisters. Very extreme. He has started this new baby stuff when he gets upset. Last night he he became so upset he had a bloody nose. He yells at my husband because he was the one who made him upset," see what you did dad, you made my nose bled." We have not had that problem in a very long time. His blood pressure rises and causes his nose to bleed. It is so scary. Of course I am crying like a baby because I thought we were past that. I cant understand how these turning back symptoms are a good sign. Can someone explain this to me. I felt so bad yesterday because prior to IVIG my son was able to answer questions without becoming upset . We could have a pretty "normal"conversation. Anyway, I flipped out because he was upset and didn't want to talk. I told him I was his mother and he would talk to me. It was rude and disrespectful for him to treat me this way .OUCH!. He was crying my daughter was upset because I upset my son and I am upset, confused and exhausted. How do we know if our pandas children are being little turds or is it really pandas and they cant help it. I have been so impatient with him lately. I dont' know what to do. I feel like a horrible mother.

Momaine How long did it take for you to see results? It has been a week and my son is so whiny and has lost all of the frustration tolerance he gained while he was on predisone. We are scheduled to have them every 28 days.

I will be praying for you. It really helped me knowing there could be side effects and what to expect. All kiddos react differently but having a general idea was helpful. As bad as it was, we survived and you will too. Thankfully it was over in one day. Keep us posted. How old is Alex?

Thank you for sharing. I borrowed the scripture. Thank you, I needed to read that at this very moment. I asked my PANDAS son who is nine to write a story and my daughter who is 6 to write a story. My daughter continues to write better than my PANDAS son. He had IVIG last week. I guess I was hoping for a miracle.

Hi There I will share with you are experience last week. My son had a 2g infusion. It was done all in one day. I know its not very typical but that is how my doctor ordered it. We had an awesome day and night but the next day was a nightmare. He woke up in the morning screaming and vomiting. He was very sensitive to the light we stayed in a dark hotel room all day. It wasn't until the end of the day that we could finally turn on the tv. I literally thought he was going to die. He was yelling take me take. Not sure where he wanted to go but I was assuming somewhere to take the pain away. We pre and post treated with ibuprofen and steroids. This past week he has been very tired. He takes a nap every day.He is not eating much either. Once again he is very irritable with a low frustration tolerance. While he was on steroids those were some of his gains. It is manageable but it is till a bummer. OCD is better. I haven't seen much change. I think your son will be fine but honestly I would fly back immediately after ivig. What I have read from others is typically side effects happen the next day. When we have our next IVIG, we will travel 4 hrs home the same evening. There is no way I want to get stuck again in a hotel room with a screaming child. I felt so helpless and praying I never have to experience anything like that again.

Now I am wondering if I should take my son of of antibiotic. I did not see any improvement on it until we started the steroid. We have had 1 ivig and my son is okay, seeing a little regression but it is manageable. He is still taking the antibiotic. I wish our doctor was closer. It is so tough to schedule phone calls with him. I hate not knowing what to do. I wish PANDAS was not so complicated

It was very interesting. It was a very slow drip. They seemed to know what they were doing at Coram. They were so caring. Our pandas doctor also mentioned that children can handle larger single doses better than young adults.I believe he has 2 children with autism so he is very sincere and empathic. He wouldn't recommended anything to patients he wouldnt be willing to use with is own children. This gave me a sense of trust and security but I was still a little concerned with the single dose.

Yes it is.

My son had an infusion last Wed at Coram. They did a one day 2 gram dose. It took 6.5 hrs. My son tolerated it great but the next day was really bad. I was so glad we did not have to go back. Initially I asked my doctor to spread out the dose but he said it was better to do one day and his patients experience the best results with a one day high dose. Now that it is over, I guess I can agree with him. One day of infusion,one day of migraines and vomit then we are done.

Love it!! I have a similar story to share. Typically when my son would spill on his shirt he would throw a fit,change his shirt and throw away whatever he was eating or drinking. A few weeks, after a steroid burst he was enjoying a snow cone and he spilled the juice on his "new" yellow shirt. He did not react and it did not seem to phase him one bit. Needless to say, I was so excited to go into town with my son who had a very obvious red snow cone stain on his shirt. My daughter asked "are going to let him go like that, and I said I sure am".

I hope someone has an answer or comment to this post. I am curious too.

Thanks Vickie! First a glass of wine from our hotel bar lol or 2

Yes, he had 2g. It was a very slow drip . It nice to hear not everyone gets side effects

That is one of the things I noticed the most post steroid burst was the interaction my son had with his sisters. He played dolls with the baby. He was the farmer. How is your son doing today? We just finished our 1st IVIG. It went well. Thank God.

Today was long but we made it through a 7.5 hour infusion with no complications. The IV was inserted only one time and my son did not even blink. He was a real champ. I am so proud of him. We are at hotel now and fixing to have some dinner. I guess you can say we are enjoying the calm before the storm. Hopefully the side effects will not be too bad. I gave him predinose this morning and gave him Motrin when we arrived at hotel. When do the side effects typically kick in?

Our doctor knows protocol and coram has been great to follow. Luckily we have not had any complications

We are at coram today. we live in new mexico and we were able to get ivig covered 100 percent through cigna.

thanks everyone.here we go

i know its a big dose. I tried to have dr spread out into 2 days but he said he has always done 1 day. Im at infusion center. Doctor lives 1000 miles away. Thanks 4 ur support. Means so much to me

My son will have IVIG in the morning. He will have it done all in one day(2g) I have prednisone but I do not know how much to give him or when. I know he is suppose to have plenty of fluids too. How much? What about the Advil. How much and when do I start. I wish my doctor would call me back. Starting to freak out.

Shirley, We did IVIG with Dr. K last Thursday and Friday and he gave us the prednisone rx AFTER the procedure just in case our son got a bad headache. He got a headache after the second day, but I only gave him motrin and saved the pred in case a "severe headache" occurred, which did not. Good Luck Linda How many did your son take? How is he doing post IVIG?

Today is our last day to take prednisone. My son is scheduled for IVIG next week. Do you know if we can give the steroids again prior to the treatment. Like the day before and the day of. We have another prescription but I wasn't sure if we could just give my son the steroids before IVIG since we are done with the 30 day tapering. I am thinking i can just give it to him the day before ,day of, and after. I am so scared of the side effects. he is doing so well. I cannot get a hold of my doctor to ask him. Maybe someone can chime in give me an answer. Thanks, Shirley

My son is having his 1st IVIG on Wed. It is a high dose but we are only scheduled for a one day infusion. This scares me. Shoulder it take two days. How do you know when it is time for anther IVIG. What symptoms do you look for?

IVIG is finally scheduled. We are very grateful to be able to have it done in NM. Our ped in California will be working with the staff at an infusion center in ABQ. The childrens deptartment at our church are having a HUGE garage and bake sale to help with travel expenses. We are blessed.