Just finished IVIG

[michele]

Sorry if I offended you. That was not my intention. I am just trying to figure out why if the IVIG is working and kids are getting cured from the PANDAS it is not being put into research documents and reported as a means to a cure. I know Diana is trying to get people to go that route but what is the length of time that she has followed the cases that were given IVIG to know it will be successful over time? She herself just had the procedure for her son last fall. Yes I am skeptical because I want to see the NIMH and Dignostic manuals recommending IVIG as a treatment for PANDAS. In The Healing nd Preventing Autism book, Dr. Kartzinel discusses plasmaphoresis and IVIG and Azith as a treatment for PANDAS OCD. He discusses why the IVIG works for repairing the damaged immune systems. He is a DAN! Are you more likely to get a DAN! to do the procedure for you? Is there a way to get insurance to cover it? I have to say I am impressed that those here have had success with it. Just wondering why the researchers for PANDAS are not recommending it? If the MD mom is going to do it because of the research she has gathered from the medical community then maybe the procedure is gaining popularity in the medical research. I am glad those of you have shared your stories with us.

 

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

[chrisw]

No offense taken, Michelle. From my understanding and because of the MANY people Diana talks to on a daily basis (I think we will owe a huge debt of gratitude to her one day) she has contact with people whose children were in the original Swedo study who did IVIG or Plasmapherisis who have had long term success. She also has never advocated for JUST IVIG but also for antibiotics. IVIG or Plasma. are the only other options when abx. no longer work. Sue Swedo told Diana that IVIG and Plasmapherisis tended to ALWAYS work but sometimes had to be repeated. Dr. Leckman of YALE told her that he has spoken with MANY Docs in Europe who are having similiar results to Dr. K's work. He has been doing IVIG for PANDAS for 10 years. His website states greater than 80% success rate after IVIG. The Dr.'s also have told Diana that there is always the option to just treat with abx. and have stated that these children have a 95% chance of being fine by puberty. They have also said the reason for the lack of medical literature on IVIG and PANDAS is due to the studies not being big enough, not to mention the expense of doing a study of this size. This is why the Yale study is imperative. If anyone is interested in the study, private message me and I will give you contact info. for Diana Pohlman. Diana has been encouraged by the Doctors to create a website with parent's stories and medical research parents have done. The Doctors will proofread it for accuracy before she puts it out. It should be done by the end of May/early June and will be called PANDASnetwork.org. In my opinion, as parents of PANDAS kids, we have alot to hope for. I believe these Doctors invovled in this study really care about our children, but this machine is just hard to get going.

All the best,

Christie

[chrisw]

Hi All,

Yesterday was 1 month since my son Jacob completed his IVIG with Dr. K. He continues to do very well. I would say that he is still 85-90% better than his pre-IVIG state. We even had strep in our house (non-PANDAS daughter) about 2 weeks ago with my son complaining of a mild sore throat, stomachache and headache. I did take him for a strep culture (came back neg.) just to make sure. Dr. K suggested that I double his dose of Azith for 10 days, just as a precaution. The only reaction I noticed was a few random tics, mild obsessing over getting a snow cone maker and a little increase in hyperactivity for about 2 days. From what I understand, the antibodies from the IVIG are mostly gone now, and his own body has taken over. He is still going in to school without problems, and I am not seeing tics. He is still a little bit hyper and impulsive, but this is really minor. I have noticed that on the days I don't give him probiotics, he is not hyper at all. Any thoughts on this? He has also brought his math grade up to an A, just since IVIG. All year he has been struggling with just getting a B and earlier in the year he got a C in Math for the first time in his life. He is able to do math in his head now, where pre-IVIG that was impossible for him. His focus is so much better. He seems so much happier now. I know that we didn't realize until now how much anxiety he was having ALL the time. He is really relaxed and this has been wonderful to watch. I don't think he has shown any turning of the pages. If so, it was very mild. We are encouraged with his progress and I am able to focus on other things besides PANDAS 24/7. It has been really nice.

 

Christie

[bmom]

Great to hear. We have just finished our 6 months post IVIG and continue to do well also. I dont think we ever had any major "turning of the pages", but possibly some minor ones FYI. I am praying that it is a long term cure for all of those that have chosen to have their child go this route.

[ShaesMom]

Christie,

 

That is fabulous news. I hope his recovery continues.

 

Sam

[mom md]

I am so glad you are still seeing a great response. Just a small footnote, neuronal tissue take a full year to heal after an injury so it may take that long to see the full effect. I think based on what you are reporting now you are off to a great start. We are planning to treat Carter this summer and I hope we will be following in your footsteps. I think you made a great decision.

Claire

[michele]

Glad to hear you are seeing such progress. Keep us updated as time goes. It seems like things are really improving.

Where do you live? Did you travel to Dr. K once for the procedure or did he see you prior to the procedure? How often will he stay in touch with you now or when do you plan to see him again? I was just wondering how this works if you live at a distance?

Michele

Hi All,

Yesterday was 1 month since my son Jacob completed his IVIG with Dr. K. He continues to do very well. I would say that he is still 85-90% better than his pre-IVIG state. We even had strep in our house (non-PANDAS daughter) about 2 weeks ago with my son complaining of a mild sore throat, stomachache and headache. I did take him for a strep culture (came back neg.) just to make sure. Dr. K suggested that I double his dose of Azith for 10 days, just as a precaution. The only reaction I noticed was a few random tics, mild obsessing over getting a snow cone maker and a little increase in hyperactivity for about 2 days. From what I understand, the antibodies from the IVIG are mostly gone now, and his own body has taken over. He is still going in to school without problems, and I am not seeing tics. He is still a little bit hyper and impulsive, but this is really minor. I have noticed that on the days I don't give him probiotics, he is not hyper at all. Any thoughts on this? He has also brought his math grade up to an A, just since IVIG. All year he has been struggling with just getting a B and earlier in the year he got a C in Math for the first time in his life. He is able to do math in his head now, where pre-IVIG that was impossible for him. His focus is so much better. He seems so much happier now. I know that we didn't realize until now how much anxiety he was having ALL the time. He is really relaxed and this has been wonderful to watch. I don't think he has shown any turning of the pages. If so, it was very mild. We are encouraged with his progress and I am able to focus on other things besides PANDAS 24/7. It has been really nice.

 

Christie

[chrisw]

Hi Michele,

We live in the Florida Panhandle (right below Alabama). We drove about 16 hrs. to Chicago with an overnight stop at my parents house in KY. We got there on a Thurs. and had a "Pre-IVIG" appt. with Dr. K in his office at 4pm. He spent about an hour with us, talking to my son and then privately to me. We then had the procedure the next morning and then again on Sat. morning. Dr. K was there the whole time. I am to email follow-ups to him at 1 week, 1 month, 3 months, 6 months and one-year post-IVIG. He asked me to be precise and address ALL of his (previously present) core symptoms. He has also promptly responded to my emails other than the up-dates. The whole IVIG experience itself was rather anti-climactic. The best part was afterwards, when we could see immediate improvement. I don't feel like we are left out on a limb because we have a Pediatrician who spoke with Dr. K pre-IVIG and is willing to be there for us if we need him ( strep tests, steriods if needed, etc.). Hope this helps.

Christie

[michele]

Wow things worked out so well for you. That is awesome you have a Dr. on board locally too. Did your local Dr. do the steroid burst first? I wish things could fall into place for us like this. I have talked to Dr. K and Dr. Leckman and Dr. Latimer but our Dr's here have never made an attempt to talk to them. I printed off emails and articles and gave them to all our Dr's here. I wanted our ped to do the steroid burst but she said she'd read everything over and let me know. A couple questions, were you on Azith before and after the IVIG? I wish I could get Azith to try it first. Did you have to go off any meds before the procedure ? Dr's here in OH are still not undersatnding or truly believeing PANDAS because of the contraversy in medical journals. I think that is why I can't get much help. My ped said the dev neuro spoke about it recently at a meeting and said it is still not understood. Thanks for explaining your process.

 

Hi Michele,

We live in the Florida Panhandle (right below Alabama). We drove about 16 hrs. to Chicago with an overnight stop at my parents house in KY. We got there on a Thurs. and had a "Pre-IVIG" appt. with Dr. K in his office at 4pm. He spent about an hour with us, talking to my son and then privately to me. We then had the procedure the next morning and then again on Sat. morning. Dr. K was there the whole time. I am to email follow-ups to him at 1 week, 1 month, 3 months, 6 months and one-year post-IVIG. He asked me to be precise and address ALL of his (previously present) core symptoms. He has also promptly responded to my emails other than the up-dates. The whole IVIG experience itself was rather anti-climactic. The best part was afterwards, when we could see immediate improvement. I don't feel like we are left out on a limb because we have a Pediatrician who spoke with Dr. K pre-IVIG and is willing to be there for us if we need him ( strep tests, steriods if needed, etc.). Hope this helps.

Christie

[chrisw]

Hi Michele,

Having a Pediatrician on our side has made all the difference. When I first saw him, I went in with articles also. I also had a list of phone numbers that Diana gave me with Dr. Leckman and Dr. K. I told the Ped. that there was a study forthcoming at YALE on PANDAS, and that my son was a probable candidate for it. I assured him that Dr. Leckman was pleading for Pediatrician's to call him so that he could inform them of the latest treatment protocol for PANDAS kids. I also told him that Dr. K was an expert on PANDAS, and that YALE was using his protocol to base the study on. My Ped. totally listened and called both Dr. Leckman and Dr. K. I'm not sure if it was what I said, or just that I got lucky with a wonderful Doc. Anyway, he started my son on Augmentin (proph.) but he did not improve as well as when he had been on Azith for 5 days previously. My Ped. went ahead and prescribed the Azith, which my son was still on when he had the IVIG. He is still on the Azith until school gets out, and then we will go to Augmentin 500mg. a day. My son also had a steriod burst, suggested by email from Dr. K which my Doc. then prescribed for him, the week prior to IVIG. I do think the burst helped my son with the anxiety of having IVIG, although it really isn't that big of a deal. Once they get the IV, it's just keeping them occupied. Diana was great in guiding me to get the abx. I'm not sure I would have gotten them without her. One other thing I should mention. When I told my Ped. that the Doc's at YALE were calling PANDAS a form of encephalitis that was autoimmune induced, he really began to listen and seemed to take me more seriously. I really hope that you can get a Doc on board with you. Maybe Diana could help you. Have you talked to her? I am wishing you the best.

Christie

[EAMom]

Hi ChrisW,

Buster and I have been wondering if doing a steroid burst shortly before IVIG actually makes the IVIG more effective so it is interesting that you did the burst just before IVIG. In other words, do the kids that get a steroid burst in the 1-3 weeks preceding IVIG have a better outcome from the IVIG vs. kids that don't have the burst (or have the burst many months b-4 IVIG).

I'm going to make a separate post on augmentin as a strep prophylaxis...is dr. K recommending 500mg once daily ...or 250mg twice daily?

[chrisw]

Hi ChrisW,

Buster and I have been wondering if doing a steroid burst shortly before IVIG actually makes the IVIG more effective so it is interesting that you did the burst just before IVIG. In other words, do the kids that get a steroid burst in the 1-3 weeks preceding IVIG have a better outcome from the IVIG vs. kids that don't have the burst (or have the burst many months b-4 IVIG).

I'm going to make a separate post on augmentin as a strep prophylaxis...is dr. K recommending 500mg once daily ...or 250mg twice daily?

Hi EAmom,

I have no science to back up my very unscientific opinion, but it would seem to make sense to inhibit the inflammation as much as possible prior to the IVIG in order to give it a head start. My son was in pretty good shape when we started the IVIG because of the effects of the steriod burst. He still had symptoms of PANDAS that Dr. K could observe Pre-IVIG, but he was better than he had been in several months. If we had to do it again, I would probably do the same thing with the steriods but maybe a longer course that ended with the beginning of IVIG.

When my son was on proph. Augmentin (pre-IVIG) we were taking 250mg x2 daily. My Ped. prescribed this dose and I'm not sure if Dr. K suggested this dose or if my Ped. made that decision independently. Anyway, he was constantly complaining of his stomach hurting (not sure if this was just PANDAS or the abx.causing this). My Ped. decreased the dose to 250mg. x1 daily. Three days later, my son had a sore throat, headache and stomachache. I wish I had gotten a strep test b/c I think he may have had it, which means he had a breakthrough on that dose. It was at this point that I suggested trying the Azith to my Ped and he prescribed. As you can imagine, I am somewhat nervous about going back to Augmentin. Dr. K prescribed 500mg. x1 daily, but had no problem with me continuing the Azith till school got out. If things don't go well on the Augmentin, not sure what we will do. I guess we'll cross that bridge when we come to it. Hope this is helpful.

Christie

[bmom]

Just wanted to add. When I read of treatments for encephalitas (PANDAS is a form of this) it talked of antibiotics for some, IVIG for others, and if this did not work, steroids and IVIG for more severe cases. So that would make sense.

[greeneyes48072]

Hey Chris,

 

How is your son still doing? We are within two weeks of our appt with oakbrook/dr k. I'm getting nervous! Just wanted to see if your son is still doing great!

[chrisw]

Hi greeneyes,

He is doing VERY WELL! We switched him to Augmentin 500mg. when he got out of school on June 4th. It was hard for me to let the Azith go, but I know it is probably for the best since he doesn't seem to need the extra immune modulation anymore. I would say that he is 90-95% better. I can't say 100% because I truthfully don't think we know what that is, since he has had PANDAS (without us realizing it) for so long. He is SO much happier and I can't tell you what that does for us. If I could offer any advice (just from my limited experience) I would suggest that before IVIG it would be good to get any exacerbation calmed down as much as possible (Azith, steriod burst) before doing IVIG. I feel that my son may have had an extra advantage because he was doing well (by no means perfect, but well for having PANDAS) at that point, maybe 70% better than his most severe exacerbation. Life is so much more enjoyable these days. I hope and pray that things go as well for you and your child. I will keep you in my prayers.

Christie