Just finished IVIG

[chrisw]

Hi All!

My 9yr. old son got IVIG with Dr. K in Chicago this past Fri. and Sat. We drove from Florida, so just got back last night. We arrived in Chicago on Thurs. for a pre-IVIG appt. with Dr. K that was extremely reassuring to me. I felt that we were doing the right thing, but after talking to Dr. K for about an hour, our decision was affirmed. Since my son had done a steriod burst the week prior, the affects were still with him and he tolerated the procedure (without to much anxiety) pretty well. I was able to see a difference in him after the first infusion. He was much more engaged in conversation and much calmer. Sat. night, he got a bad headache and ran fever. Dr. K said that this is common so we were prepared. He didn't feel well Sunday (dull headache and no appetite) but as the day went on, he seemed to feel alot better. We drove from Chicago to my parents house in Ky. to spend the night. My parents could NOT get over the difference in Jacob. He seemed to mature overnight. He was carrying on full conversation with my parents, LEADING conversation, making us laugh, responding to affection and giving it back in a NATURAL way, and hearing me and doing things I asked him to do the FIRST time! My parents live in a big, old house(built in 1880's) and Jacob went upstairs all by himself to get on the computer. It was evening, and when I went up to check on him, he was sitting in the pitch dark playing the computer. I asked him if he wanted me to turn a light on for him, and he told me that he was ok and I didn't need to. WHAT???? First of all, he would never go upstairs by himself, much less in the dark with no lights. And secondly, he responded to my question, even while playing a game on the computer, the first time I asked it!!!! I have not seen any tics since Sunday afternoon. They just gradually went away beginning on Fri. He and I travelled from KY to FL which took us about 8 hrs. We only stopped 3 times for him to go potty. That's a record! My husband and daughter noticed how different he was last night also. The true test came this morning. His worst symptom has been his separation anxiety. He was so relaxed and happy this morning before school. When we got in the car line, he got right out of the car when they opened the door (has had to be physically removed from car many times in the past) and walked toward the school. He looked back at me and gave me the most beautiful smile I have ever seen! That was the FIRST time that has EVER happened with him going to school. In the past, if he looks at me, he has a look of sheer terror on his face. Needless to say, I cried tears of joy the whole way home. I have much hope for the future. I am trying to prepare myself for "turning of the pages" episodes, but I have seen my son again and I know that we are on the way to recovery. I do not have a minute of regret about doing the IVIG. We may still have bumps in the road, but I am very optimistic. For us, it was the only option. I would be happy to speak with anyone about our experience. Private message me and I will email or call you. I will also post updates. My prayers are with all of you.

Christie

[momtotaylor]

Hi Christie! Great news! Thanks for the uplifting post. It is great to hear your success story. Please keep us posted.

[chrisw]

Update!

Jacob's teacher called me this afternoon to let me know how amazed she was to see him so changed in such a short time. She couldn't believe it! She told me that it was like whatever was making him afraid all the time was just gone. She said that he seemed completely relaxed and just happy to be there. He also only went to the bathroom twice today rather than the 5-8 times that was the norm. I still have not seen him tic again. I just put him to bed and only had to lay with him for about 5 min. and then he was ok with me leaving. I am loving life right now. Hope we can just keep him well. Dr. K has put him on 500mg. a day Augmentin for a year. I wonder how hard it will be to give up THAT security blanket when the time comes!

Christie

[bmom]

Chris W.- I was just wondering how much your son weighs? I think my son who is ten is on 250 mg Augmentin a day. I will have to look. Thanks.

[kim]

Honest Christie, I had tears running right down my face reading your post. What wonderful news. I pray this is a long lasting result for your son and can imagine the relief and joy you must be feeling right now!

[greeneyes48072]

Woo hoo! That is so great. I'm hoping to get IVIG for my son with Dr K in June. I hope we see as great of a turn around as you have!! I must admit though, we will probably keep him on the antibiotics long term. I would hate to have years go by and then a problem hit again when he is in his teens, at an age when IVIG is no longer effective...

[chrisw]

Hi All!

Another GREAT morning!!!! I feel like this must be a dream.

Bmom- Jacob weighs about 70lbs. When he began prophylactic abx. (pre-IVIG) he was put on Augmentin 500mg. After 3 weeks we went down to 250mg. a day. Within a few days, he was presenting with sore throat, stomachache and headache. Plus, his PANDAS symptoms were picking up. At that time, his Ped. went ahead and put him on Azith. Truthfully, I haven't started him on the Augmentin yet bc I haven't filled the prescription. He is still taking his Azith. I wish he could stay on that until school gets out.

Kim-Thank you for your kind words. I am so excited about this transformation but at the same time I am accutely aware of the pain that PANDAS is causing our sweet children and I almost feel as if my words could be torturing to some. Please forgive my gushing.

Greeneyes- Dr. K is a trip. He REALLY does care about these kids. Thank goodness for him. Again, I don't regret IVIG for one moment. I didn't want my son to suffer with this into adolescense. He will be 10 in Sept. and I just couldn't bare the thought of another miserable school year. I hope your son will be able to get the IVIG in June and does well. To me, almost ANY improvement would have been worth it.

Christie

[bronxmom2]

Chris,

Would you mind sharing how much it cost and whether you were able to get insurance to cover any of it?

 

Did you have to meet with Dr. K significantly before the IVIG, or were you able to just fly in and get right to business?

 

I am hitting a wall here in NYC, his doctor thinks he is "cured" now that his tonsils are out-- my family members all think he is "fine", but he is NOT fine (his teacher just told me that he might not pass first grade)--I saw a pediatric neurologist who wondered aloud why I was wasting her time-- I honestly don't even know where to seek help next.

 

I just we could just go to Dr. K, but we are totally broke. My mother could help, but she thinks I am inventing this. It's so frustrating! I feel like I have only half my son.

[chrisw]

Chris,

Would you mind sharing how much it cost and whether you were able to get insurance to cover any of it?

 

Did you have to meet with Dr. K significantly before the IVIG, or were you able to just fly in and get right to business?

 

I am hitting a wall here in NYC, his doctor thinks he is "cured" now that his tonsils are out-- my family members all think he is "fine", but he is NOT fine (his teacher just told me that he might not pass first grade)--I saw a pediatric neurologist who wondered aloud why I was wasting her time-- I honestly don't even know where to seek help next.

 

I just we could just go to Dr. K, but we are totally broke. My mother could help, but she thinks I am inventing this. It's so frustrating! I feel like I have only half my son.

Hi Bronxmom,

We paid out of our pocket, but we were fortunate to recently receive some money (not enough to cover it completely) from a settlement where I was hit by a drunk driver 2 years ago. I do think we would have used a credit card if we had to though. My husband is military, so we have the military insurance. I tried to get the Pediatric clinic on our AF base to help us, but they just kept telling me to take him to a Psychiatrist. Anyway, Dr. K's office and the surgical center where the procedure was done will submit to my insurance company, but they have already said that since he is not an "approved" provider, they will not cover it. We'll see, but I'm not holding my breath. I had a phone consult with Dr. K several weeks ago, and then when we arrived in Chicago we had a pre-IVIG appt. in his office that lasted about an hour. The next morning we began IVIG. He was very thorough in the phone consult, which lasted about an hour, and then explained alot of stuff in the appt. Dr. K's fee was $2,400. That is reasonable because he has to be there the whole time the IVIG is happening. I'm not sure of the breakdown of the other part except I'm pretty sure his medication was around $6000 (based on his weight) and I paid $8,100 total. So, all in all (not counting travel,etc.) it was $10,500.

I am so sorry that you are having so many problems getting help. Is your child on abx.?

[chrisw]

Hi All,

Just wanted to give a 2 week update. Jacob is doing very well. It is hard to put a number on improvement because he has had the anxiety for SO long (at least since he was 4), but he has not shown anything near the level he had pre-IVIG. He is so much more relaxed in the mornings, happy in the car on the way to school. I still don't think he loves school (many kids don't) but at least he is not terrified to go anymore. He has not had a problem getting out of the car since IVIG, it just seems like no big deal to him. His teacher still reports that he seems to be relaxed and happy at school, and he got an A on his math test Thurs. YEAH!! When he got in the car on Wed. he told me he had the best day ever at school. THAT has NEVER happened. He used to always tell me that he had a bad day and he wanted to be home schooled when I picked him up. Big change. I still see a little bit of hyperactivity at times, nothing that is unmanageable. I just don't see him tic anymore, although when I ask him if he still does, he will say sometimes. I just am not seeing it, which makes me wonder if he just doesn't realize that he is not doing it anymore. His urinary frequency is gone and I haven't noticed his pupils being dilated. He also goes to sleep by himself at night. I may have seen a "turning back of the pages" once, but not sure. He just had a big mood swing several days ago where he got angry about going to baseball practice. He cried and argued with me. It lasted about 30 min. and then it was done. He apologized to me later. I'm really not sure if it was or wasn't turning back pages. Anyway, I would say that he is at least 85-90% better, maybe more. I feel so relieved but still cautious. I really have hope that my son will recover from this.

Blessings,

Christie

[lss]

Christie,

 

I am so happy for you and to hear that your son is doing well. Thanks again for talking to me and giving me some helpful info before heading up to Chicago. Now I'm just contemplating driving or flying, with the swine flu outbreak, I have to think about which one is less likely to affect my son. For now, I think we are still flying and having him wear a mask, not sure if this will help, but it cant hurt.

 

Keep me posted on your son progress.

 

Linda

[mom md]

Christie-

Your info on the IVIG with Dr. K was very helpful. We had a phone consult with him a few weeks ago. I am trying to see if I can get it done in Charlotte. If not, we will be heading there too. What is the "turning back the pages" thing I keep seeing people speak of?

Thanks,

Claire

Christie,

 

I am so happy for you and to hear that your son is doing well. Thanks again for talking to me and giving me some helpful info before heading up to Chicago. Now I'm just contemplating driving or flying, with the swine flu outbreak, I have to think about which one is less likely to affect my son. For now, I think we are still flying and having him wear a mask, not sure if this will help, but it cant hurt.

 

Keep me posted on your son progress.

 

Linda

[michele]

Do you all think the IVIG will be a long term cure? Has any research been proven that the symptoms stay gone over an extended period of time? If it is only temporary why go through it when meds can accomplish the same temp fix? What happens when these kids get strep again? The IVIG is usually not covered and seems kind of extreme without the research to back it. You are a Dr., do all your research contacts tell you this is your best option? I have been waiting fo more research but do you think that is going to happen?

 

Has anyone else thought of setting up a foundation for PANDAS which could include a research fund? It really needs to be done so we can get an accurate count of how many are affected and help get the research funded. I was thinking Diana and Buster and Dr. Leckman from Yale and Dr. K would be good at getting this thing going since they all have alot of information on PANDAS. Any ideas on how to get this started?

 

 

 

Christie-

Your info on the IVIG with Dr. K was very helpful. We had a phone consult with him a few weeks ago. I am trying to see if I can get it done in Charlotte. If not, we will be heading there too. What is the "turning back the pages" thing I keep seeing people speak of?

Thanks,

Claire

Christie,

 

I am so happy for you and to hear that your son is doing well. Thanks again for talking to me and giving me some helpful info before heading up to Chicago. Now I'm just contemplating driving or flying, with the swine flu outbreak, I have to think about which one is less likely to affect my son. For now, I think we are still flying and having him wear a mask, not sure if this will help, but it cant hurt.

 

Keep me posted on your son progress.

 

Linda

[michele]

Do you all think the IVIG will be a long term cure? Has any research been proven that the symptoms stay gone over an extended period of time? If it is only temporary why go through it when meds can accomplish the same temp fix? What happens when these kids get strep again? The IVIG is usually not covered and seems kind of extreme without the research to back it. You are a Dr., do all your research contacts tell you this is your best option? I have been waiting fo more research but do you think that is going to happen?

 

Has anyone else thought of setting up a foundation for PANDAS which could include a research fund? It really needs to be done so we can get an accurate count of how many are affected and help get the research funded. I was thinking Diana and Buster and Dr. Leckman from Yale and Dr. K would be good at getting this thing going since they all have alot of information on PANDAS. Any ideas on how to get this started?

 

 

 

Christie-

Your info on the IVIG with Dr. K was very helpful. We had a phone consult with him a few weeks ago. I am trying to see if I can get it done in Charlotte. If not, we will be heading there too. What is the "turning back the pages" thing I keep seeing people speak of?

Thanks,

Claire

Christie,

 

I am so happy for you and to hear that your son is doing well. Thanks again for talking to me and giving me some helpful info before heading up to Chicago. Now I'm just contemplating driving or flying, with the swine flu outbreak, I have to think about which one is less likely to affect my son. For now, I think we are still flying and having him wear a mask, not sure if this will help, but it cant hurt.

 

Keep me posted on your son progress.

 

Linda

[chrisw]

Claire,

"Turning back of the pages" was explained to me by Dr. K as the process of the swelling in the brain going down, therefore causing movement of the Basil Ganglia (eventhough it is "good" movement) which could induce behaviors. He said this could occur within the first 6-8 weeks after IVIG. I'm not sure I am doing the explanation justice, but it made sense when Dr. K said it. He said to expect it and to not let it upset me. I'm sure it will.

 

Michelle,

Yes, I hope and believe that IVIG could be a long term cure. From Dr. K's experiences and case studies, to my conversations with Diana who has told me of others who have had long term success with IVIG, and Sue Swedo's research, I feel that the money was well spent. Medications have never had the same effect that I am seeing after IVIG. I believe the IVIG is a potential cure for my son. Why would I choose to just medicate the symptoms of a disease if I have the means to get a treatment that can greatly improve my child's quality of life and has a good chance of curing it? I do realize that it may not be a cure for everyone, and that some may need more than one treatment. I also know that there are risks involved, as with almost ANY medical procedure. We weighed the options and decided that if there was any way to make life easier for our son without loading him up on medications, we would do what we could. We felt IVIG was our best option. I believe that every parent on this forum is trying to make the best decisions possible for their children and I am not saying that medications are wrong or bad, but they are just what you called them, "temporary fixes" that treat or mask symptoms, but in the case of PANDAS, do not cure. I wish you all the best with your child.

 

Also, my other child was diagnosed with strep on Friday. I really can't say that I have seen a change or reaction from Jacob at all. YEAH!!!!!

 

Christie