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HT's Mom

Just returned from IVIG # 2 with Dr. K

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Hi everyone,

I haven't posted in a while but have been following the forum. We had a few months of wavering on what to do next with our DS16, and finally went ahead with his second IVIG. I will give a quick recap: One of my identical twin boys, now 16 years old, is a PANDAS kid. Earliest episodes were probably around five or six years old, but they went unnoticed by us as anything but behavioral weirdness. At age 11, major PANDAS episode that escalated over about six months from minor tics to full on OCD and vocal repetition. We were terrified and did all the doctors, unsuccessfully, until we discovered PANDAS, finally. Treated with two weeks of penicillin and everything disappeared. He was 90% + for the next four years. Then last winter, OCD and tics started up again, and progressed pretty quickly. It was different that time, more internal intrusive thoughts, total ADD, anxiety, lack of motivation, severe tics. We ran all the strep titer, lyme, myco p, cultures, immune system tests. Nothing! Negative or normal for all. But ds was probably exposed to strep over the holidays last year, and had his wisdom teeth out just prior to that.

 

We did IVIG with Dr. K in May. DS had a pretty severe vomiting and migraine episode afterward, but was completely fine within 48 hours. Over the rest of the school year and summer he improved tremendously, as far as DH and I could tell. Tics decreased almost completely, and his overall mood, focus, etc was much better. But he continued to say that thoughts were bothering him and as school stresses started we saw him backslide into less and less focus, severe anxiety, etc. He has been on Augmentin xr ever since the IVIG, 500/day, with one episode where we increased it due to a severe symptom flare. That worked at the time, but I woke up one night about a month ago and said to myself, Ok, we can't just let it go and hope for the best. He deserves every chance to get to 100%. So after a few email exchanges with Dr. K, he scheduled him in, and we went back to Chicago from VA last week. Everything went smoothly. They gave him additional tylenol, benedryl and IV steroids to ward off the bad reaction, which worked until about 4 am Sunday night when he started vomiting and the migraine started again. Thank goodness we were home by then, and not at OHare! Anyway, he is fine now, Monday night. Now wait and see. Pray!

 

Dr. K and I sat at Starbucks next to the surgical center for an hour or so on Friday while the IVIG was going on. I picked his brain a bit about a lot of things. PANDAS in general, Dr. Swedo's study, the TX conference, why antibiotics work even tho kids don't have active infections, insurance issues, Lyme and co-infections, fish oil, SSRI's. I tried to ask him about various things that are often debated on this forum, just to get his viewpoint. I realize other doctors have their protocol, and not all parents here agree with Dr. K's approach to some things. If anyone is interested in what he said on some of these things, you can PM me. I don't want to put words in his mouth on the forum. In general though, he is definitely an advocate of IVIG, and believes that most patients will need it eventually to stop the bad autoimmune response. I think what is interesting is that he has treated OVER 500 patients over twelve years! And from all over the world. That is more and longer than any other researcher or doctor. So, much of his approach and advice may seem standard and the same for most patients, but I believe he bases his protocol on his cumulative experience of what he has come across and what has worked over time for the majority of so many cases.

 

Anyway, I'm very hopeful that this second treatment helps my son. I am certainly aware that at 16 it may be tougher, and if it doesn't, I will seek appointments with another PANDAS doctor for further input and care, although I can't imagine what else we can do other than further IVIG's. Ds will be on Augmentin xr, 1000 fish oil, C, E, folic acid for the next year. And a refrigerated probiotic. All dr. K's protocol. I add in D.

 

Thank you to everyone here for the advice you have given to me, even when you don't know it, and for all the support you provide each other, especially the newbies. I don't know where I'd be without that. Sorry this is so long....

Edited by HT's Mom

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Hi HT'sMom-- Good to hear from you. I will be anxious to hear the updates over the next few weeks and pray the treatment is entirely effective.

 

It does seem that adolescent changes add fuel-to-the-fire at times. I believe you are in good hands with Dr K -- and only wish we could all sit for an hour to ask the man questions.

 

I will be thinking of you--

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Hoping and praying for your son's recovery from 2nd IVIG - please keep us posted. We are still hoping that insurance will cover IVIG for our DS15. It's helpful to know how things are going for other teens. It must have been wonderful to pick Dr. K's brain and get his perspective - he certainly has a lot of experience. Hang in there and keep looking up. :D

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Hi,

I would love to her what Dr. K said-- my son is 12 and is really struggling with OCD and hallucinations-- very terrorizing. We see Dr. B. and are starting the process of IVIG but overall we feel so helpless. What are his thoughts around the adolescent pandas kid? supplements? type of antibiotics most effective post-IVIG, etc. Thank you so much, Sharon

 

 

 

 

 

Hi everyone,

I haven't posted in a while but have been following the forum. We had a few months of wavering on what to do next with our DS16, and finally went ahead with his second IVIG. I will give a quick recap: One of my identical twin boys, now 16 years old, is a PANDAS kid. Earliest episodes were probably around five or six years old, but they went unnoticed by us as anything but behavioral weirdness. At age 11, major PANDAS episode that escalated over about six months from minor tics to full on OCD and vocal repetition. We were terrified and did all the doctors, unsuccessfully, until we discovered PANDAS, finally. Treated with two weeks of penicillin and everything disappeared. He was 90% + for the next four years. Then last winter, OCD and tics started up again, and progressed pretty quickly. It was different that time, more internal intrusive thoughts, total ADD, anxiety, lack of motivation, severe tics. We ran all the strep titer, lyme, myco p, cultures, immune system tests. Nothing! Negative or normal for all. But ds was probably exposed to strep over the holidays last year, and had his wisdom teeth out just prior to that.

 

We did IVIG with Dr. K in May. DS had a pretty severe vomiting and migraine episode afterward, but was completely fine within 48 hours. Over the rest of the school year and summer he improved tremendously, as far as DH and I could tell. Tics decreased almost completely, and his overall mood, focus, etc was much better. But he continued to say that thoughts were bothering him and as school stresses started we saw him backslide into less and less focus, severe anxiety, etc. He has been on Augmentin xr ever since the IVIG, 500/day, with one episode where we increased it due to a severe symptom flare. That worked at the time, but I woke up one night about a month ago and said to myself, Ok, we can't just let it go and hope for the best. He deserves every chance to get to 100%. So after a few email exchanges with Dr. K, he scheduled him in, and we went back to Chicago from VA last week. Everything went smoothly. They gave him additional tylenol, benedryl and IV steroids to ward off the bad reaction, which worked until about 4 am Sunday night when he started vomiting and the migraine started again. Thank goodness we were home by then, and not at OHare! Anyway, he is fine now, Monday night. Now wait and see. Pray!

 

Dr. K and I sat at Starbucks next to the surgical center for an hour or so on Friday while the IVIG was going on. I picked his brain a bit about a lot of things. PANDAS in general, Dr. Swedo's study, the TX conference, why antibiotics work even tho kids don't have active infections, insurance issues, Lyme and co-infections, fish oil, SSRI's. I tried to ask him about various things that are often debated on this forum, just to get his viewpoint. I realize other doctors have their protocol, and not all parents here agree with Dr. K's approach to some things. If anyone is interested in what he said on some of these things, you can PM me. I don't want to put words in his mouth on the forum. In general though, he is definitely an advocate of IVIG, and believes that most patients will need it eventually to stop the bad autoimmune response. I think what is interesting is that he has treated OVER 500 patients over twelve years! And from all over the world. That is more and longer than any other researcher or doctor. So, much of his approach and advice may seem standard and the same for most patients, but I believe he bases his protocol on his cumulative experience of what he has come across and what has worked over time for the majority of so many cases.

 

Anyway, I'm very hopeful that this second treatment helps my son. I am certainly aware that at 16 it may be tougher, and if it doesn't, I will seek appointments with another PANDAS doctor for further input and care, although I can't imagine what else we can do other than further IVIG's. Ds will be on Augmentin xr, 1000 fish oil, C, E, folic acid for the next year. And a refrigerated probiotic. All dr. K's protocol. I add in D.

 

Thank you to everyone here for the advice you have given to me, even when you don't know it, and for all the support you provide each other, especially the newbies. I don't know where I'd be without that. Sorry this is so long....

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Hi, curious about your convo with Dr k. About why abx work when there is not an infection. Can you recall what he said. Also, this may sound strange, but also curious as to the cost of ivig treatment with Dr k. My ins. Does not cover ivig for PANDAS. We have bcbs of PA. Which is very frustrating bc they are a large ins company. I had emailed Dr k and he feels our next step should be ivig, but I don't know if we have the funds to proceed sadly enough! Not really sure what (or how) to do. Thanks for any of your input.

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I've never posted before but DS14 had a very bad day...so desparately looking for answers. He's been sick for 9+ months now, not able to go to school this year.

He's 4weeks out from his first IVIG at MassGeneral (insurance covered it!) and not much better. Tics/chorea seems less but he's in another world. Curious if others with a teenage are seeing lots of intrusive internal thoughts. He was dx with Sydenham's Chorea--could be "on the pands-sydenham's spectrum" Swedo said she'd treat it the same anyway.

I'm interested in what you're doing for fish oil, C, E, folic acid, etc? Does Dr. K recommend vit B complex? We doing Aug 500 2x/day, multivitamin. Also trying to follow a gluten free diet but its VERY hard to get a teen to comply with that.

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I think it's important for parents to know that, unless Dr. K has changed in the last year or so, he does not do much testing to find out what is going on. He pushes the IVIG, and it simply is not helpful for everyone. We are finding after $15,000 for IVIG that was NOT helpful, our dd has gut issues (HPHPA markers high), which are probably causing her OCD, intrusive thoughts and anxiety. We are treating to bring down IGG mycoP titers as well, but I'm beginning to think the gut is the problem, and I wish we would have known that BEFORE the IVIG and trip to Chicago. (Treating a gut infection with probiotics and abx is much cheaper!)

 

I know some of you have had tremendous results with IVIG, and I don't want to discourage anyone, but I would say to find a doc to check for these other problems BEFORE spending that kind of money. Even after we didn't have results from the IVIG, Dr. K was just pushing for another one. (Without ordering other testing...) Now we have a doc that has been willing to do other testing, and there are definitely other things going on in OUR situation.

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searching for Help,

I was just reading about HPHPA yesterday for the first time. This is a simple urine test correct? Our pediatrician is very nice but not helpful --has told me "this PANDAS stuff is out of his league". Would an Infectious Disease doctor order this test? Can you tell me what type/specialty doc you are working with? My DS has many intrusive thoughts. It wasn't this way when he started, it was more chorea then but this changed around the time the Neuro tried Tegretol on him. They are recomending a 2nd IVIG. Insurance does pay but I'm worried about wasting time going down the wrong path.

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Our nurse practitioner ordered the Organic Acids Test (OAT) from The Great Plains Laboratory. The lab gives an interpretation of the results, so your doc doesn't really have to do any research, although The Great Plains Lab has a site with webinars that go into detail about this stuff, and I think the extra info is very helpful. I think our nurse practitioner has spoken to docs at some of the labs, but not sure if it was specifically to this one. I'm not sure how I discovered this nurse practitioner - I may have been searching for integrative or functional medicine doctors. But she's interested in the "whole body" approach - finding the root cause of the problem and treating it.

 

Yes, it is a urine test. It shows metabolic markers for Intestinal Microbial Overgrowth, Oxalate Metabolites, Glycolytic Cycle Metabolites, Krebs Cycle Metabolites, Neurotransmitter Metabolites, Folate metabolism, nutritional markers, amino acid metabolites and some others. The interpretation part is really interesting, our dd has high HPHPA markers and high HVA/VMA markers. So it sounds like the Clostridia is causing her high dopamine and low epinephrine. She also showed yeast, so we are treating for both and using different probiotics. BTW - she does NOT have diarrhea, she has always been extremely constipated, although the probiotics and/or magnesium citrate supplements are helping with that.

 

BTW - Culturelle and Saccaromyces Boulardii (like Floraster or Jarrow has one) are both recommended to treat the clostridia. Dr. Greenblatt claims he's seen OCD symptoms diminish over time with treatment. We're just getting started, so I can't say yet, but the more I read, the more I'm very hopeful about this. Also the fact that our immune system and neurotransmitters are so closely related to gut activity - I'm really thinking "gut" is the key in ending this nightmare

 

I'd be curious to hear from other parents who have had (or hadn't!) had success treating the gut.

 

I posted the link for The Great Plains Lab, and a webinar about "Inflammation and Neuropsychiatric Illness" from Dr. Greenblatt yesterday evening. You might find that helpful. (Sorry I can't give you more right now, we are running out the door!)

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Pepper1, treating teens with this can be tough. My son is 15 and we have been through many treatments finally seeing some improvements after multiple IVIGs and high dose steroids. Many of the teens have additional autoimmune encephalitis illnesses. Check out the video on aealliance.org Grand Round. We are starting immunosuppressants with our son and hope it will help him become functioning again.

 

T.Anna

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Thanks--nice to know there are other teens out there dealing with this. May I ask how many rounds of IVIGs did you try before you saw improvment?

We tried a course of steroids in August but only a tiny improvement. The doc is suggesting we try it again, maybe a different steroid. We're thinking about going down to Dr. L for plasamapheresis.

My DS dosen't really speak anymore (except to himself) and I can't tell if its "seletive mustism" or difficultly with forming words. He won't get dressed /washed up without a lot of help. It's about a 2 hour process just to get him down to breakfast . We think we have the right docs now but...its taking so long!

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He did 60mg of Prednesone for 2wks and then tapered down for 2wks. He was positive for strep and had high b titers. Looked like hashimotos en. as well, but now its come down to borderline high-normal. He was negative for Anti-NMDA. Had west nile virus but only in blood not in the Spinal fluid so Dr. Pasternack said it's not an issue.

I just watched the video..maybe the PEX would be a good idea then? We tried through Mass General/Boston since Dr. Walters recommended it at first but she wasn't able to get it for us.

I've just started reading this forum--folks are trying so many different things. How does everyone learn about all of this? None of the Docs have even mentioned vitamins or probitics..ugh

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I am so sorry , and many of us can relate to the severity of symptoms you are describing. You asked how people learn about possible treatments and truly in our case this site has been a lifeline -- being able to read of the experiences of others has been a help. We chose a line of treatment and stayed the course until it worked or became evident it was not working, then something else would be tried- -

Www.pandasnetwork.org has also been key --

 

Quite honestly if my child was as severe as you describe I would try to get to a Pandas treating doctor ASAP and one that can test and diagnose and treat!!! Have you considered the Duke group? They are doing multiple tests and treating accordingly --

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