IVIg this Monday and Tuesday

[amy s]

Ok, so we have a wonderful new pediatrician since moving back from Europe. (a civilian military doctor- if someone would like his name, please privately message me) who is going to do IVIg for us this Monday and Tuesday, using Dr. K's protocol. I am so nervous about this working.

 

Things have gotten so bad with rages that my dd (7) is unable to attend school for now. Two recent suspensions and I just feel I can't continue to bring her back until she is WELL. It is so demoralizing for her and I worry about everyone else too! It is a horrible sight to see a child like that. If the IVIg doesn't work she will have to go back on some kind of psych meds, I guess. We are looking into homebound school with our district because we don't know how this will work (the IVIg). Has anyone else had to do this? I just feel our life is crumbling. I have not been able to work because of all this. I know I am preaching to the choir here but we are just sinking so low. I want to go back to work so bad and just have some sort of normal life. This has wiped me completely out. I can't even picture our life getting back to normal.

 

We got the weaning done from the risperadol and zoloft a few weeks ago and some of the OCD stuff was still there at a subclinical level but the rages got out of control. But during the steroid burst the OCD was so good that her severe skin picking issues stopped and finally allowed all her wounds to heal in just that 5 days. Even the tremors were better.

 

We noticed results from day 2 until day 6 from the steroid burst. Day 7 was horrendous with a meltdown that lasted from 1030am until about 315pm. I am still sore and have multiple bruises. She is extremely powerful when she gets like that. Our ped gave another steroid burst just to get relief until the IVIg this week. Everything that I read talks about the IVIg working for OCD and tics for kids with PANDAs but I haven't read anything about the other psychiatric symptoms mentioned. Does anyone have any good stories about that? She just recently went on Augmentin, she was on Penicillin VK for prophylaxis.

 

She is such a wonderful kid. She's hilarious, smart, pretty and so caring and loving...normally. During the steroid bursts we have been able to enjoy her again, our family was finally able to relax a bit and laugh.

Regards,

amy s

[lss]

Amy,

 

Good luck this coming week and keep me posted on how things go after IVIG. We are still on the fence about doing the IVIG. Our doctor here talked to Dr. K and prescribed the steriod burst, but I'm holding off a few days. I've heard that sometimes the steriod burst can have good results even up to 90 days but also as short as 2 days. All my best.

 

Linda

 

Ok, so we have a wonderful new pediatrician since moving back from Europe. (a civilian military doctor- if someone would like his name, please privately message me) who is going to do IVIg for us this Monday and Tuesday, using Dr. K's protocol. I am so nervous about this working.

 

Things have gotten so bad with rages that my dd (7) is unable to attend school for now. Two recent suspensions and I just feel I can't continue to bring her back until she is WELL. It is so demoralizing for her and I worry about everyone else too! It is a horrible sight to see a child like that. If the IVIg doesn't work she will have to go back on some kind of psych meds, I guess. We are looking into homebound school with our district because we don't know how this will work (the IVIg). Has anyone else had to do this? I just feel our life is crumbling. I have not been able to work because of all this. I know I am preaching to the choir here but we are just sinking so low. I want to go back to work so bad and just have some sort of normal life. This has wiped me completely out. I can't even picture our life getting back to normal.

 

We got the weaning done from the risperadol and zoloft a few weeks ago and some of the OCD stuff was still there at a subclinical level but the rages got out of control. But during the steroid burst the OCD was so good that her severe skin picking issues stopped and finally allowed all her wounds to heal in just that 5 days. Even the tremors were better.

 

We noticed results from day 2 until day 6 from the steroid burst. Day 7 was horrendous with a meltdown that lasted from 1030am until about 315pm. I am still sore and have multiple bruises. She is extremely powerful when she gets like that. Our ped gave another steroid burst just to get relief until the IVIg this week. Everything that I read talks about the IVIg working for OCD and tics for kids with PANDAs but I haven't read anything about the other psychiatric symptoms mentioned. Does anyone have any good stories about that? She just recently went on Augmentin, she was on Penicillin VK for prophylaxis.

 

She is such a wonderful kid. She's hilarious, smart, pretty and so caring and loving...normally. During the steroid bursts we have been able to enjoy her again, our family was finally able to relax a bit and laugh.

Regards,

amy s

[nicm930]

Amy, I am so sorry that your dd is having a hard time. My dd (almost 10yrs old) is homebound right now. She did't have rages at school she would just loudly sob and moan. After 1 hour of her being in school they would call me to come get her. Kids were starting to make fun of her (4th grade). So I went with it so she didn't get down on herself anymore than this PANDAS is doing to her self esteem. She gets 1 hour a day with a tutor, she is a special ed teacher and is absoutley wonderful. If they classify her as "other health impaired" she will get 2 hours a day. I am still trying to get her on anti-biotic. I have a phone consult with Dr K Monday am and my pediatrician ageed to listen to him, so I am hopeful.

 

My dd was on Rispadral too. I weaned her from it. It did nothing for her. She is still on psych meds..for now. I want her off this stuff.

 

I wish you luck with the IVIG. I hope your get your happy little girl back. It's so hard to see this "monster" as my dd calls it take our children from us. I hope all our children get better soon!

 

Nicole

[EAMom]

Amy, I'm so glad you were able to find a doctor that is able to help! Things will get better.

[michele]

Hi. I am so happy you found a Dr. willing to step out of the box for you! Did your ped consult Dr. K? Did Dr. K suggest weaning off all psych meds first? That has to be difficult.

 

I have read about the homebound school with PANDAS kids and actually was a homebound tutor for the district years ago. I guess if they are unable to attend the regular school per a Dr. note (Maybe contact the director of Spec. Ed), the district must pay a homebound tutor to come to you daily. In your case if she is raging at school then they would most likely sign off on it.

 

I know you are so scared and exhausted but look how far you have come. You are a great mom who is doing everything for her little girl. Please keep me posted and God bless your family during this difficult journey.

 

 

 

Michele

 

Ok, so we have a wonderful new pediatrician since moving back from Europe. (a civilian military doctor- if someone would like his name, please privately message me) who is going to do IVIg for us this Monday and Tuesday, using Dr. K's protocol. I am so nervous about this working.

 

Things have gotten so bad with rages that my dd (7) is unable to attend school for now. Two recent suspensions and I just feel I can't continue to bring her back until she is WELL. It is so demoralizing for her and I worry about everyone else too! It is a horrible sight to see a child like that. If the IVIg doesn't work she will have to go back on some kind of psych meds, I guess. We are looking into homebound school with our district because we don't know how this will work (the IVIg). Has anyone else had to do this? I just feel our life is crumbling. I have not been able to work because of all this. I know I am preaching to the choir here but we are just sinking so low. I want to go back to work so bad and just have some sort of normal life. This has wiped me completely out. I can't even picture our life getting back to normal.

 

We got the weaning done from the risperadol and zoloft a few weeks ago and some of the OCD stuff was still there at a subclinical level but the rages got out of control. But during the steroid burst the OCD was so good that her severe skin picking issues stopped and finally allowed all her wounds to heal in just that 5 days. Even the tremors were better.

 

We noticed results from day 2 until day 6 from the steroid burst. Day 7 was horrendous with a meltdown that lasted from 1030am until about 315pm. I am still sore and have multiple bruises. She is extremely powerful when she gets like that. Our ped gave another steroid burst just to get relief until the IVIg this week. Everything that I read talks about the IVIg working for OCD and tics for kids with PANDAs but I haven't read anything about the other psychiatric symptoms mentioned. Does anyone have any good stories about that? She just recently went on Augmentin, she was on Penicillin VK for prophylaxis.

 

She is such a wonderful kid. She's hilarious, smart, pretty and so caring and loving...normally. During the steroid bursts we have been able to enjoy her again, our family was finally able to relax a bit and laugh.

Regards,

amy s

[amy s]

Yes, Dr. K did request to wean off psych meds first before steroid burst. He said start it after one week off meds.

Thanks everyone for the well wishes. I will keep you posted.

Regards,

amy s

[EAMom]

Hi Amy,

where is your pediatrician located? Also, can a regular person see a civilian military doctor or do you have to be in a military family?

[amy s]

Hi Amy,

where is your pediatrician located? Also, can a regular person see a civilian military doctor or do you have to be in a military family?

 

 

They can only see military families at hospital/clinic located on post.

[Worried_Dad]

Hi, Amy:

 

Hang in there - believe me, folks on this forum can totally sympathize and understand how traumatic this is for the PANDAS child and their entire family! This past August and September were definitely the worst months of my family's collective life. Our 12-year-old son woke up with an overnight explosion of PANDAS symptoms, like he was possessed. The next 6 weeks were just plain nightmarish and drained my wife and I completely. We felt like we were losing our son, didn't know how we'd keep him out of the hospital and hold our family together.

 

We started working with Dr. K, and that gave us hope. Steroid burst worked well: gave us about 5 days of blessed relief. Weaning off psych meds (per Dr. K advice) improved things again. We had IVIG with Dr. K in early October, and we've seen HUGE improvements since then. Due to our son's age and symptom severity, we still have a ways to go, but he's immensely better than he was before IVIG. We have a healthy family life again and can laugh, smile, and joke together. Our son is more himself than we've seen in a long, long time!

 

We've heard other IVIG / Dr. K success stories and really believe that this treatment offers hope when PANDAS kids get to that "desperation stage" of illness. Here's hoping that you're telling your own success story post-IVIG on this forum in the not-too-distant future!

 

Best of luck!!!

[pmoreno]

Amy,

 

Good luck this coming week and keep me posted on how things go after IVIG. We are still on the fence about doing the IVIG. Our doctor here talked to Dr. K and prescribed the steriod burst, but I'm holding off a few days. I've heard that sometimes the steriod burst can have good results even up to 90 days but also as short as 2 days. All my best.

 

Linda

 

Ok, so we have a wonderful new pediatrician since moving back from Europe. (a civilian military doctor- if someone would like his name, please privately message me) who is going to do IVIg for us this Monday and Tuesday, using Dr. K's protocol. I am so nervous about this working.

 

 

 

 

 

Hi Linda,

I noticed your recent post and saw that you were hesitant about the steroid burst. I just wanted to reassure you that the dose is quite small for a short period of time, so should have absolutely no bad effects at all. Whether it works well (for a period of 90 days as you said - although I haven't heard it lasting that long) or just for 1 or 2 days, it really doesn't matter because it is not given as a treatment, or with the idea of improving the symptoms, it is simply a diagnostic tool - to see if there is any good response to the anti-inflammatory effect on the brain. So if it works at all, even for a day - it tells them what they want to know. (It's not really the quantity - like days vs. weeks or months) It's just that it happens at all. Pat

 

 

 

 

 

 

 

 

 

Things have gotten so bad with rages that my dd (7) is unable to attend school for now. Two recent suspensions and I just feel I can't continue to bring her back until she is WELL. It is so demoralizing for her and I worry about everyone else too! It is a horrible sight to see a child like that. If the IVIg doesn't work she will have to go back on some kind of psych meds, I guess. We are looking into homebound school with our district because we don't know how this will work (the IVIg). Has anyone else had to do this? I just feel our life is crumbling. I have not been able to work because of all this. I know I am preaching to the choir here but we are just sinking so low. I want to go back to work so bad and just have some sort of normal life. This has wiped me completely out. I can't even picture our life getting back to normal.

 

We got the weaning done from the risperadol and zoloft a few weeks ago and some of the OCD stuff was still there at a subclinical level but the rages got out of control. But during the steroid burst the OCD was so good that her severe skin picking issues stopped and finally allowed all her wounds to heal in just that 5 days. Even the tremors were better.

 

We noticed results from day 2 until day 6 from the steroid burst. Day 7 was horrendous with a meltdown that lasted from 1030am until about 315pm. I am still sore and have multiple bruises. She is extremely powerful when she gets like that. Our ped gave another steroid burst just to get relief until the IVIg this week. Everything that I read talks about the IVIg working for OCD and tics for kids with PANDAs but I haven't read anything about the other psychiatric symptoms mentioned. Does anyone have any good stories about that? She just recently went on Augmentin, she was on Penicillin VK for prophylaxis.

 

She is such a wonderful kid. She's hilarious, smart, pretty and so caring and loving...normally. During the steroid bursts we have been able to enjoy her again, our family was finally able to relax a bit and laugh.

Regards,

amy s

[michele]

Can those of you that have used Dr. K and live out of state from him describe the process he used to treat your child? Did he first do a phone consult of 1 hour for $300? What came from that? How did it work with living out of state from his practice? Did you still use your own Dr.? Was it a pediatrician ? Did Dr. K consult with them via phone or fax or email? Did your ped/ local Dr. take your word on treatment or need to talk to Dr. K? It amazes me how some of you that are newer to PANDAS have jumped right onto the steroid and IVIG treatments with Dr. K. I would appreciate an overview of how he assisted you and what his fees were along the way. Did he charge each consult even those with your Dr's? Was any of this covered by your insurances?

I made a phone consult appointment for next week. Just curious how this will work. We did see Dr.Murphy in Florida and it really didn't help that much with the treatment plan other then diagnosis and OT.

 

Thanks,

Michele

 

Hi, Amy:

 

Hang in there - believe me, folks on this forum can totally sympathize and understand how traumatic this is for the PANDAS child and their entire family! This past August and September were definitely the worst months of my family's collective life. Our 12-year-old son woke up with an overnight explosion of PANDAS symptoms, like he was possessed. The next 6 weeks were just plain nightmarish and drained my wife and I completely. We felt like we were losing our son, didn't know how we'd keep him out of the hospital and hold our family together.

 

We started working with Dr. K, and that gave us hope. Steroid burst worked well: gave us about 5 days of blessed relief. Weaning off psych meds (per Dr. K advice) improved things again. We had IVIG with Dr. K in early October, and we've seen HUGE improvements since then. Due to our son's age and symptom severity, we still have a ways to go, but he's immensely better than he was before IVIG. We have a healthy family life again and can laugh, smile, and joke together. Our son is more himself than we've seen in a long, long time!

 

We've heard other IVIG / Dr. K success stories and really believe that this treatment offers hope when PANDAS kids get to that "desperation stage" of illness. Here's hoping that you're telling your own success story post-IVIG on this forum in the not-too-distant future!

 

Best of luck!!!

[amy s]

Can those of you that have used Dr. K and live out of state from him describe the process he used to treat your child? Did he first do a phone consult of 1 hour for $300? What came from that? How did it work with living out of state from his practice? Did you still use your own Dr.? Was it a pediatrician ? Did Dr. K consult with them via phone or fax or email? Did your ped/ local Dr. take your word on treatment or need to talk to Dr. K? It amazes me how some of you that are newer to PANDAS have jumped right onto the steroid and IVIG treatments with Dr. K. I would appreciate an overview of how he assisted you and what his fees were along the way. Did he charge each consult even those with your Dr's? Was any of this covered by your insurances?

I made a phone consult appointment for next week. Just curious how this will work. We did see Dr.Murphy in Florida and it really didn't help that much with the treatment plan other then diagnosis and OT.

 

Thanks,

Michele

 

Hi Michele,

 

I first found Dr. K's website because I ran across a website www.e-pandas.com and was shocked because the story on that site was so similar to my dd's...it was the very first thing I had heard even remotely close to what we were dealing with. At the time we had very limited resources with doctors and even being able (me) to research things was hard due to living in Europe and we had terrible internet and power outages-- we lived in an old farm villa. Anyway, I found that website 7 months after the abrupt onset of horrific symptoms. So the owner of e-pandas.com gave me Dr. K's name/website saying it was the only one she knew of at the time who was doing much to treat these kids. I convinced the docs we had to do strept titers. So, I emailed Dr. K right away and told our story to him and he replied. Our ped at the time was not impressed because of lack of research tied to his name that my doc could find. Also he was annoyed that I even contacted another doctor. Whatever, so that's another story. Then because of the titers and literature that I was able to show our ped, he did prescribe prophalactic antibiotics (pen vk) at least but would not consider a steroid burst.

 

We then made the huge plans to relocate to the USA, selling the cars, packing out and spending weeks in hotels while getting our housing arranged and waiting 3 months for our stuff to arrive, while sleeping on mattresses in the floor and going to doctor visits and dealing with school issues daily. Within 3 days of landing (we still had very severe symptoms) I was sitting in our new ped's office discussing my dd's case and trying to see how understandable he would be about this situation. Since this new pediatrician was the same old one we used to have who also treated my dd when she had post infectious glomerulonephritis, and we loved him then, and we knew he seemed to understand the huge change in her, so we started seeing him. He immediately put in multiple consults to see other providers. One of the most important ones to us anyway, was the pediatric Rheumatologist who we went to see. When I went to him, I took Dr. K's original email with me to discuss/ get a second opinion of what Dr. K had to say and so forth. The group who assessed her and listened to the whole story (at rheumotology) did believe that this sounded at least a very convincing case of pandas and that Dr. k's advice was valid and could be tried. I felt at ease hearing that because I know that's what Rheumatologists treat- autoimmune diseases. BUT they couldn't do it there. They offered to provide assistance/guidance to our pediatrician regarding IVIg. Our ped was experienced with IVIg with other cases of autoimmune issues, but not pandas. THEN, I had a phone consult with Dr. K. I forwarded the info that I got from Dr. K to our pediatrician. Dr. K offered to provide assistance including his protocol to our pediatrician if our ped called or emailed him.

 

I do not feel that we jumped into steroid burst and IVIg at all. This is something we had been working towards for a very long time and due to the severity of symptoms it was something we had to try. The possible benefits WAY outweighed the possible risks for us.

 

Good luck with your telephone consult.

Regards,

amy s

[michele]

Thanks for your story. I am so happy things have worked out for you with Dr.'s Sorry if I offended anyone with the word jumped into the IVIG and steroid treatment. I didn't mean without consideration or in a hurry. I just am amazed because we have seen at least ten Dr.'s since the onset of PANDAS and none of them have suggested it yet. I am giving up on Dr's in OH. None of them have been able to treat PANDAS or are willing to try. We have been at this for six years Feb. 14th and have gotten little help. The one Dr. who would prescribe antibiotics just left his practice. That is why I guess I will try Dr. K.

 

Michele

Can those of you that have used Dr. K and live out of state from him describe the process he used to treat your child? Did he first do a phone consult of 1 hour for $300? What came from that? How did it work with living out of state from his practice? Did you still use your own Dr.? Was it a pediatrician ? Did Dr. K consult with them via phone or fax or email? Did your ped/ local Dr. take your word on treatment or need to talk to Dr. K? It amazes me how some of you that are newer to PANDAS have jumped right onto the steroid and IVIG treatments with Dr. K. I would appreciate an overview of how he assisted you and what his fees were along the way. Did he charge each consult even those with your Dr's? Was any of this covered by your insurances?

I made a phone consult appointment for next week. Just curious how this will work. We did see Dr.Murphy in Florida and it really didn't help that much with the treatment plan other then diagnosis and OT.

 

Thanks,

Michele

 

Hi, Amy:

 

Hang in there - believe me, folks on this forum can totally sympathize and understand how traumatic this is for the PANDAS child and their entire family! This past August and September were definitely the worst months of my family's collective life. Our 12-year-old son woke up with an overnight explosion of PANDAS symptoms, like he was possessed. The next 6 weeks were just plain nightmarish and drained my wife and I completely. We felt like we were losing our son, didn't know how we'd keep him out of the hospital and hold our family together.

 

We started working with Dr. K, and that gave us hope. Steroid burst worked well: gave us about 5 days of blessed relief. Weaning off psych meds (per Dr. K advice) improved things again. We had IVIG with Dr. K in early October, and we've seen HUGE improvements since then. Due to our son's age and symptom severity, we still have a ways to go, but he's immensely better than he was before IVIG. We have a healthy family life again and can laugh, smile, and joke together. Our son is more himself than we've seen in a long, long time!

 

We've heard other IVIG / Dr. K success stories and really believe that this treatment offers hope when PANDAS kids get to that "desperation stage" of illness. Here's hoping that you're telling your own success story post-IVIG on this forum in the not-too-distant future!

 

Best of luck!!!

[amy s]

Oh, I also wanted to post an update that we are home and day two of the IVIg infusion is DONE. There were no reactions and were able to progress with Dr. K's protocol step by step. She had a couple very bad times with rages (we're talking hours each time) and there was some talk amongst the staff that they could not handle her at this hospital - that she needed higher care (psychiatric was what they were thinking) but those people didn't know the deal. Our ped just kept pushing for us to get through this there and so we were able to complete it because of him. He did tell me that if something should happen that IF she might need more infusions in the future, it couldn't be done there and I guess I understand that because he's been so great and actually kinda went out on a limb for us.

I will keep you guys posted on progress. So far she's doing great, but she's also probably exhausted after today's events! Good luck to all these kids. ...and all of us parents just have to keep fighting to get some sort of relief for these children. Thanks everyone for the good wishes and all your stories. Keep posting your progress, please.

Regards,

amy s

[Worried_Dad]

Hi, Michele:

 

We found out about Dr. K on this forum back in August, when we were pretty desperate to find someone who had more experience with this disorder. Our son had been sick for more than a year, but August 17 marked a symptom explosion far worse than anything we'd seen before. I traded a couple of e-mails with Dr. K, and he thought it sounded like classic PANDAS. He offered the phone consult as an option, so I scheduled it with his senior secretary. During the phone consult, he reviewed our son's case history, asked lots of questions, and impressed us with his accurate prediction of symptoms and trends we had observed. He discussed treatment options - including IVIG - and recommended we try the steroid burst as a diagnostic tool to "confirm the PANDAS diagnosis."

 

We worked with our local doc (very open-minded guy) to get the prednisone prescription per Dr. K's advice and did the burst. Sure enough, we saw major improvement and let Dr. K know. Also had our local doc order another throat culture, ASO titer, and Anti-DNAse B per Dr. K's request and e-mailed him the numbers. At that point, Dr. K felt highly confident that our son had PANDAS and felt that IVIG would have a good chance of success for him.

 

Since our son is 12 (close that that puberty point after which IVIG doesn't always work well), and his symptoms were so awful, we felt like we had to move forward with IVIG quickly. (Back in March, during a "waning period," a pediatric neurologist had also told us that IVIG was the best option if things got worse and said he had seen success with kids with similar symptoms. He wasn't a "PANDAS guy" though, and primarily treated kids with Tourette's and movement disorders... and he's about the same distance away from us as Dr. K. We worked with him as part of a research study that provided a free PET scan, which confirmed inflammation in our son's basal ganglia.)

 

We did provide Dr. K's contact info (phone, e-mail) to our local docs. Not sure if they ever contacted him, but they cooperated with his requests for tests and prescriptions (thank goodness!).

 

So until we got to Chicago for the actual IVIG, Dr. K didn't charge us anything except the $300 for that initial phone consult. And he continued to answer e-mail questions very promptly, before and after IVIG.

 

Hope that helps. If our local doc had not been so cooperative, I'm not sure what we would have done. Might have been tough to get Dr. K to call in prescriptions and order tests from out of state, especially when he had not yet examined our son in person.

 

 

Can those of you that have used Dr. K and live out of state from him describe the process he used to treat your child? Did he first do a phone consult of 1 hour for $300? What came from that? How did it work with living out of state from his practice? Did you still use your own Dr.? Was it a pediatrician ? Did Dr. K consult with them via phone or fax or email? Did your ped/ local Dr. take your word on treatment or need to talk to Dr. K? It amazes me how some of you that are newer to PANDAS have jumped right onto the steroid and IVIG treatments with Dr. K. I would appreciate an overview of how he assisted you and what his fees were along the way. Did he charge each consult even those with your Dr's? Was any of this covered by your insurances?

I made a phone consult appointment for next week. Just curious how this will work. We did see Dr.Murphy in Florida and it really didn't help that much with the treatment plan other then diagnosis and OT.

 

Thanks,

Michele

 

Hi, Amy:

 

Hang in there - believe me, folks on this forum can totally sympathize and understand how traumatic this is for the PANDAS child and their entire family! This past August and September were definitely the worst months of my family's collective life. Our 12-year-old son woke up with an overnight explosion of PANDAS symptoms, like he was possessed. The next 6 weeks were just plain nightmarish and drained my wife and I completely. We felt like we were losing our son, didn't know how we'd keep him out of the hospital and hold our family together.

 

We started working with Dr. K, and that gave us hope. Steroid burst worked well: gave us about 5 days of blessed relief. Weaning off psych meds (per Dr. K advice) improved things again. We had IVIG with Dr. K in early October, and we've seen HUGE improvements since then. Due to our son's age and symptom severity, we still have a ways to go, but he's immensely better than he was before IVIG. We have a healthy family life again and can laugh, smile, and joke together. Our son is more himself than we've seen in a long, long time!

 

We've heard other IVIG / Dr. K success stories and really believe that this treatment offers hope when PANDAS kids get to that "desperation stage" of illness. Here's hoping that you're telling your own success story post-IVIG on this forum in the not-too-distant future!

 

Best of luck!!!