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PEX and IVIG results


dcmom
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Hi parents.

 

I thought it might be helpful to try to compile some info here. I know there are many on the forum who have recently had IVIG and PEX. But, it can take a while for the brain to heal. It also takes a while to see if there will be another episode.

 

I am asking, if there are any parents of children who have had IVIG or PEX over a year ago. If so, please give us a quick synopsis of your story, if you can. How long did your child have pandas before treatment, exactly what treatment you had, what the results have been.

 

Maybe this will help those of us struggling in decisions to treat.

 

If you know someone not on this forum who has a story- please ask them to come on and post.

 

thanks

 

Eileen

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So what do we make of the non-response to this question? Are there only recent treatments? Are they doing poorly and too frustrated/busy to reply? Are they doing well and not on this forum so much anymore?

 

Please accept my apologies. I've provided status updates on my son's condition post-IVIG on several other threads, and it is a bit depressing to revisit it, so I didn't respond as quickly as I should have to this one. You first instinct is right on the money for our situation: been too busy and drained to post much lately.

 

We did our 1st round of IVIG with Dr. K in Chicago in October 2008 (just under a year ago). At that time, our son had just had an overnight explosion of classic PANDAS symptoms (in August 2008) and we were overwhelmed, our house like a place under siege. We just tried to hang on until the IVIG treatment and prayed it would help.

 

It did. Within a month of IVIG round 1, our son's OCD, rages, crying jags, and general emotional lability improved about 70% and we were sure the nightmare was over. We were SO relieved.

 

But we had been warned that our son's age (he was 12 at that time) and symptom severity meant he might need more than one treatment. Things stagnated in the 3rd month post-IVIG. Then our other 2 boys began bringing home infections from school. Despite prophylactic augmentin, our son had a "mini-exacerbation" in January 2009 that required a second antibiotic (5-day zithromax Z pack) to clear. He lost ground and didn't regain it. Then in March of this year, a respiratory infection triggered another one-day explosion of OCD that was the worst exacerbation yet, and we were back in Hades!

 

We had been trying since January to find a local doc to order IVIG round 2 for us in-network so we wouldn't have to pay in full up-front. (Dr. K's surgical center of choice is "non-participating" for our insurance.) Never found anyone willing to order it. So in May of this year - with our son completely crippled by OCD contamination fears and massive anxiety - we gave up and just scheduled another round in Chicago with Dr. K. Took out a loan to pay for it and an additional round recommended by Dr. K to "really knock it out" this time. So we had IVIG round 2 in June and round 3 in July.

 

So far, we've seen minor improvement since these 2 additional rounds of IVIG (maybe 25-30%) but nothing close to as dramatic as we saw in October 2008. Our son is now 13 (close to the upper age range for effectiveness of IVIG, according to Dr. K) and each exacerbation seems to have done more damage. We're still praying that his brain will heal with time... as long as we can keep infection at bay. But to be honest, we're terrified that winter will see our other boys inevitably bringing bugs home, and don't know how that will affect our PANDAS son's immune system.

 

I know there are parents on this forum who have seen amazing results for their kids from a single round of IVIG, especially if their children were under the age of 10. For kids over age 10, it seems to be less predictable. Right now, we're wondering if our son really needs monthly IVIG infusions. Unfortunately, our insurance won't cover that right now, and we can't afford to pay in full anymore.

 

I hesitate to post these kinds of updates because I don't want to discourage folks. Each round of IVIG has definitely helped our son, at the very times when things seemed desperate and he needed help the most. But I can't say we're a success story yet. Right now, the improvements are very gradual and only time will tell.

 

I really, really wish I could share more clear-cut, positive feedback for you!

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Worried Dad - my heart feels so heavy to hear of your experience. Thank you so much for sharing. Please realize how important and helpful it is for others of us to hear your words.

 

Are you familiar with the book The Horse Boy. It's just out this past spring - it's the story of a father and his autistic son. They actually travel to outer Mongolia to seek help. It's a great story. A documentary film of the trip will be out soon. http://www.horseboymovie.com/

 

~Kathy

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Thank you for sharing, worried dad. I completely understand not wanting to revisit what you have been through. I posted this question because I feel I have seen too many stories like yours on this board. In one way, it is great to have hope- but, it is also important to have reasonable expectations.

 

I hope you find the answers for your child. Have you considered plasma exchange? (I am sure you have.) I can tell you Dr Latimer and the team at Gtown are amazing and top notch. And, although I am waiting to hear about our insurance- I think many people are able to get it covered.

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I know there are parents on this forum who have seen amazing results for their kids from a single round of IVIG, especially if their children were under the age of 10. For kids over age 10, it seems to be less predictable. Right now, we're wondering if our son really needs monthly IVIG infusions. Unfortunately, our insurance won't cover that right now, and we can't afford to pay in full anymore./quote]

 

WorriedDad,

 

It so heartbreaking that your son continues to struggle. I'm wondering if you have done the immunological workup to see if he has an underlying immune issue? If it is found that he has one, it would increase the likelyhood that insurance would pay for the IVIG.

 

My heart just breaks for you and your family.

 

Sam

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In November, my son will be 1 year post IVIG. I consider the IVIG "somewhat successful" and I am glad we did it, yet he is not symptom free. When he did the IVIG, he was a few weeks past his 10th bday. His main symptoms: Tics, Separation anxiety (mainly at night, but moving into day), and urination issues, and light sensitivity that invoked tics. A few weeks after the IVIG he was pretty close to symptom free. We remained that way for approx. 6 months. He was much improved. Since July, we have been having some bumps in the road. July, he lost 2 teeth and started with some tics again. A round of full dose Augmentin calmed things down. Then he has been sick off and on the last month with tics coming and going. He did a full round of Azith and is now on full dose Augmentin. The problem is that these illnesses are likely viral and so things are lingering. He is just getting over a bad cold where tics and night time urination reared its ugly head again, but seem to be calming down as he improves. My hope was that he could be symptom free post IVIG, and at this point I can say that is not the story. Yet, it has kept things under control and leveled out the symptoms when they were clearly going down hilll prior. I am going to talk to Dr. K soon and see if this is likely the way things will go or if improvement will still occur. His nighttime separation never seemed to be relieved and we have tried many things to get him to sleep by himself. He seems to be totally fearful and I have not seen it improved. That is not the worst symptom though and we are still hoping he can get over it. At this point things are ok. There are times when he is mainly symptom free (except the night time separation) and that brings some peace. I would love to be over this whole PANDAS thing and keep hoping that will occur. But symptoms are livable and manageable. I would love to tell you all that it was 100% clear though. Good luck to you all and I am glad Worried Dad posted as I think about his son and wonder how things are!

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My dd had IVIg (Dr. K's protocol) in November, so it has only been just over 10 months for her but I will go ahead and post an update now.

 

My dd was 5, and we were living in Italy at the time when pandas symptoms exploded August 12, 2007. My husband was deployed to Afghanistan for 15 months. My dd's symptoms were enuresis, strange urinary issues (constantly thinking she'd wet her pants but didn't...stuff like that), separation anxiety (we had to do everything together), suicidal statements, no longer played or was able to do really anything independently (the only activity she did was line up toys and tie straps and ropes into long strings). She had hand tremors which eventually included her entire upper body and head and she began walking strange. She had motion sickness which she had not had before. She told on herself for things she did not do. She ate rocks and trash.

She had severe OCD which consisted of:

statements over and over (like a good day was 3 times every 5 minutes) "my head says I am going to kill you" and "when you coughed (or when 'they coughed' didn't matter who), I smiled" and "I just said a bad word" (of course these things never happened in actuality --she just had to say it) and she had severe skin picking issues...at times 20 wounds on her body from it. She had horrible rages which would come from nowhere and were completely crippling, leaving us stranded in various places in Europe....her rages have lasted as long as 5 hours long and required extreme physical restraint techniques. We struggled with doctors for a year with this going on with only one period that she went back to normal-ish in April and May and it came back June 6th. Of course the whole time we were trying to figure out what was wrong, just like I'm sure the rest of you guys did....we did lots of testing...I knew it had to be something organic causing this because it really was out of the blue. I had finally started to hear about pandas, knew it was that but could not convince anyone. I emailed Dr. K and he emailed back with his advice.

 

There was a period of time that school was not an option and even when it was, she was only able to go maybe 2 days per week and I had to be on stand by for a phone call and rush in there to get her out of there due to rages.

 

We got moved back to the states in August (my husband's deployment ended in July) and went through the steps and hoops we needed to, in order to get the IVIG and she had it in November 08.

She was a little better within days and a lot better in weeks and every month continued to get even better. She had a small set back in July 09 but full strength antibiotics helped right away. Her set back symptoms were: began wetting the bed at night again, got motion sickness again, and got uncharacteristically irritable. And she told on herself one time for something (I can't remember what right now but something about it was very similar to the types of things she told on herself for before).

 

Other than that she has really been doing great. She is so happy and smart again and enjoys playing and just enjoys life! She is a completely amazing kid that makes us laugh and smile.

 

Our family is still trying to heal from the ordeal. It was very traumatic at times, physically and emotionally, I am sure you all know. I've said it on here before, in other places, but the statement "my head says that I'm going to kill you" being the first thing you hear every morning and the last thing you hear every night and hearing it thousands of times per day started to hack away at my own mental health.

 

Anyway, I'm so proud of her and our family is doing ok now. Just getting on with life step by step. She's back in school and I'm back to work full time and my husband's deployed yet again, but this time to Iraq and only 12 months.

 

I am always wishing all the children from here all the best.

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Hi parents.

 

I thought it might be helpful to try to compile some info here. I know there are many on the forum who have recently had IVIG and PEX. But, it can take a while for the brain to heal. It also takes a while to see if there will be another episode.

 

I am asking, if there are any parents of children who have had IVIG or PEX over a year ago. If so, please give us a quick synopsis of your story, if you can. How long did your child have pandas before treatment, exactly what treatment you had, what the results have been.

 

Maybe this will help those of us struggling in decisions to treat.

 

If you know someone not on this forum who has a story- please ask them to come on and post.

 

thanks

 

Eileen

 

Hi Eileen,

In 2003 my 6 year old was diagnosed with PANDAS at Children's Hospital Boston. There were two possible treatments: Medication, or IVIG. No one we knew had even heard the disease, and IVIG scared us. We declined.

 

In 2007 we had a second, far more severe episode of PANDAS. My son had IVIG about 18 months ago. I'm sorry to report that he didn't experience any relief. When we requested IVIG we were very surprised to discover that IVIG was no longer a treatment option at Children's Hospital. It was as though it had never existed. We moved heavan and earth, and my son finally had the procedure. He breezed through the procedure with no side effects. I'm happy to answer any questions about our experience if anyone has them.

 

Best wishes,

Lena

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Hi, I just read you response to another post. I would say it is critical to stay on prophylactic antibiotics after IVIG. Even with prophylactic antibiotics, a few kids in Swedo's study had to have a repeat of IVIG to after exposure to strep (even though they were on pen prophylaxsis). Below is from Diana's conversation with Dr. Cunningham at the Univ. of Oklahoma. I agree with her that it is really important to avoid strep exposure (and esp. a full blown strep infection!!) post-IVIG. On that same vein, I would encourage continued testing of family members for strep, even if assymptomatic (our younger dd is a carrier and gets strep with no symptoms, last school year we had her tested monthly once the strep notices started coming home from school!):

 

WHEN DOES A CHILD NEED IVIG or PEX or retreatment?

Madeleine said that the clinical picture is the most important thing because this bloodwork is new. She said not to be afraid if your child re-tests for Cam Kinase in a few months after treatment and the numbers are still high. She said rather look at your child. If a little OCD remains or mild tics – it is up to the parent and child and the disruption to family to decide if further treatment is warranted.

I pointed out that we are seeing that there is a range in PANDAS. Some have very acute pandas onset and others have milder pandas onset with rapid remissions. It is up to each parent to figure out what measures they’ll take to arrest the PANDAS symptoms. In any case, there is good evidence from doctors like Swedo and others that at puberty the syndrome will stop.

She did say that when the child is healing from the initial onset -- be sure family members are clear of strep because it is hard for the new IGG cells to do their job if they are around strep and it can re-ignite symptoms until good replication of IGG cells have occurred.

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I personally wouldn't let the replies to this thread be to discouraging to anyone looking at PEX or IVIG as a treatment. Parents whose children are no longer suffering from PANDAS are, in my opinion, highly unlikely to be spending much time on this forum. They are off leading their lives and enjoying time with their recovered children. My son had PEX recently and I am determined to post periodic updates regardless of the success or failure of the procedure, but, I find that already, when things are going well, I am not spending time here but off trying to enjoy life a little again. DR K. has treated hundreds of kids with IVIG. He says it is a cure. Dr. Latimer treats with IVIG and PEX and says they are cures, these kids get better. The study done on IVIG and PEX showed that at the 1 year mark the kids in both groups had improved greatly. Those are the things I personally would take to the bank.

 

For those whose children are still suffering after these procedures, my heart goes out to you, but keep working and advocating for your child. If they have PANDAS, then there is absolutely no reason that they can not be cured eventually. If my sons PEX does not work completely then I will make sure that the antibody levels haven't come back up, indicating more strep exposure, or hidden strep in the body. We will do more PEX if we have to, IVIG if need be, and certainly find someone willing to prescribe long term full strength antibiotics.

 

The good news I think is that awareness and belief in PANDAS is growing in the medical community and slowly more and more doctors will be willing to fight it agressively. I read "Saving Sammy" a few days ago, and along with being reminded to never give up, I was filled with renewed confidence that even the worst cases of PANDAS can be overcome if treated correctly.

 

Thanks, Alex

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I 100% agree with this. I spend less time here when our lives are normal. I am determined to pass the help onto others, but I also hope to have a normal life. And while I learn invaluable information here, this will not truely be solved until research efforts are dramatically (like 8000%) increased, so that we are not forced to hear antidotal answers, but can look at studies of 100's of children, and any subtypes, and then make the best decisions for their care. In the meantime, thank heavens we have each other to talk to and learn from.

 

I personally wouldn't let the replies to this thread be to discouraging to anyone looking at PEX or IVIG as a treatment. Parents whose children are no longer suffering from PANDAS are, in my opinion, highly unlikely to be spending much time on this forum. They are off leading their lives and enjoying time with their recovered children. My son had PEX recently and I am determined to post periodic updates regardless of the success or failure of the procedure, but, I find that already, when things are going well, I am not spending time here but off trying to enjoy life a little again. DR K. has treated hundreds of kids with IVIG. He says it is a cure. Dr. Latimer treats with IVIG and PEX and says they are cures, these kids get better. The study done on IVIG and PEX showed that at the 1 year mark the kids in both groups had improved greatly. Those are the things I personally would take to the bank.

 

For those whose children are still suffering after these procedures, my heart goes out to you, but keep working and advocating for your child. If they have PANDAS, then there is absolutely no reason that they can not be cured eventually. If my sons PEX does not work completely then I will make sure that the antibody levels haven't come back up, indicating more strep exposure, or hidden strep in the body. We will do more PEX if we have to, IVIG if need be, and certainly find someone willing to prescribe long term full strength antibiotics.

 

The good news I think is that awareness and belief in PANDAS is growing in the medical community and slowly more and more doctors will be willing to fight it agressively. I read "Saving Sammy" a few days ago, and along with being reminded to never give up, I was filled with renewed confidence that even the worst cases of PANDAS can be overcome if treated correctly.

 

Thanks, Alex

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I personally wouldn't let the replies to this thread be to discouraging to anyone looking at PEX or IVIG as a treatment. Parents whose children are no longer suffering from PANDAS are, in my opinion, highly unlikely to be spending much time on this forum. They are off leading their lives and enjoying time with their recovered children. My son had PEX recently and I am determined to post periodic updates regardless of the success or failure of the procedure, but, I find that already, when things are going well, I am not spending time here but off trying to enjoy life a little again. DR K. has treated hundreds of kids with IVIG. He says it is a cure. Dr. Latimer treats with IVIG and PEX and says they are cures, these kids get better. The study done on IVIG and PEX showed that at the 1 year mark the kids in both groups had improved greatly. Those are the things I personally would take to the bank.

 

For those whose children are still suffering after these procedures, my heart goes out to you, but keep working and advocating for your child. If they have PANDAS, then there is absolutely no reason that they can not be cured eventually. If my sons PEX does not work completely then I will make sure that the antibody levels haven't come back up, indicating more strep exposure, or hidden strep in the body. We will do more PEX if we have to, IVIG if need be, and certainly find someone willing to prescribe long term full strength antibiotics.

 

The good news I think is that awareness and belief in PANDAS is growing in the medical community and slowly more and more doctors will be willing to fight it agressively. I read "Saving Sammy" a few days ago, and along with being reminded to never give up, I was filled with renewed confidence that even the worst cases of PANDAS can be overcome if treated correctly.

 

Thanks, Alex

 

Alex,

 

I couldn't agree with you more..... we are one week post IVIG. Our son is doing well, I am suffering from Post Pandas Episode and the entire family is looking forward to a normal life. We have 2, two year olds that need our attention. I already sense my need to refocus BUT this forum has been invaluable. I plan to post updates but I'm frankly exhausted from the 12 weeks of sleepless nights from the time our son got sick until now.

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My son has had 16 IVIG treatments. He seemed to improve around treatments 5, 6 and 7, and then nothing. We increased the dose as his weight increased. No further improvement, and he even worsened back to the point that he was at before IVIG while still on IVIG. After increasing the dose, we gave it 6 treratments before we gave up and finally, we've stopped.

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