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desperately sick/starting Rituximab infusions - what to expect?


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Hi, I opened an account and posted the other day about my son, now 17, suffering for half his life with severe PANS. It started with countless ear infections as a baby/toddler, then 7 known cases of strep as a child, even lyme disease at age 4. On 11/9/05 at 3:30pm our entire world ended as we knew it. He came home from school hallucinating, paranoid, delusional. We tried every antipsychotic on the market, none helped and even made him worse. We even had in a study at NIH looking for childhood onset schizophrenia that first year - which they ruled out. It still KILLS me that Dr Rapoport and Dr Swedo are colleagues yet they don't collaborate on their research! If they had only tested for strep - his titers were off the charts, as we learned later in 2006. In 2007 he had 5 IVIG treatments. It took well over a year, and while his chorea/tics disappeared, the psychological never fully did. So I did everything I could think of to ensure he never again got strep, Prophylactic antibiotics, homeopathic remedies, natural remedies, diet/supplements to support his immune system, chiropractic kinesiology, I can go on and on. But he still had terrible exacerbations, especially every Spring! We no longer felt safe in our home, he was dangerous. So I gave up on PANDAS and believed the psychiatrists, loading him up on psych meds to the point that all he could do is drool. It was by divine intervention that I took FMLA when my husband got sick (and treated successfully) for cancer last year. Meanwhile I attended the NE PANDAS conference - Bradley was so sick he was committed to psych hospital for 35 days last fall. I made an appt with Dr Latimer - it took months to see her but given all the years of clinical data, combined with positive Cunningham panel and immune work up, she can see he is so far gone and ordered Rituximab infusions last thursday. She helped us win approval from our insurance company and we head down to Georgetown tomorrow to start (we live in NJ). In all my years of research, I never read about Rituximab for PANS. What exactly can we expect? Dr Latimer didn't go into detail but Dr Aziza Shad at Georgetown, who will do the infusion, will likely explain. From a parent perspective, can anyone else add? THANK YOU!!

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My daughter had it last month. I responded to your post on the other thread (stanford thread, I think)

My daughter is doing excellent but was no where near square one when she had it.

If you want to communicate, feel free to pm me.

My daughter is 16. She was a patient of dr l. She is now treated by duke. We have been to georgetown for pex, ivig several times (2 kids treated) & I can share with you anything you want to know.

I believe rituximab has made a big difference already. My daughter was not at square one and has an antibody that has been proven to be responsive to rituximab, so I think her response may be abnormally quick.

I am amazed and thrilled that you are getting this done. Dr L is really great to get it done. She wanted so much for my daughter and just could not get it done at that time (2010-early 2013). Dr shad is great, too.

Attitudes much be changing there.

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Brads Mom, our stories are similar and I would love to contact you and talk. My son is also 17 with schizophrenic symptoms, a history of frequent streps, lyme, ear infections, and he had a strep-triggered PANDAS onset at the age of 10. He is currently in the COS study at NIH, and we are working on getting the COS team and Dr. Swedo's team to collaborate on his case. When we last saw Dr. L 10 months ago, she felt our son was a candidate for IV Rituximab, but at the time, Georgetown had not yet established the protocol for these treatments. I'm glad to know that Dr. L has put that in place. My son has severe OCD with delusions and completely debilitating auditory hallucinations, paces constantly, and has not been able to function outside of a hospital setting for over two years. He is a non responder to all antipsychotics including Clozaril (used as a last resort for treatment-resistant schizophrenia), so we plan to connect with Dr. L some time soon to look into the Rituximab option again. He does have a positive CamK, and in the past we have had partial success with IVIG and plasmapheresis.

 

Pow Pow has been a good resource for me, and I can connect you with others whose children have had IV Rituximab. I will message you with my contact info.

 

I have not posted on this forum for a very long time, but your story has really hit home for me. Best of luck at Gerogetown. I hope we can talk soon.

 

Ellen

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thank you ALL so much! Ellen/powpow I have reached out to you separately but eamom - we saw Dr Bouboulis, a Lyme expert in CT last week as well. He put our son on doxy together with his current zithro and ordered specialized labs through Igenix. Trouble is, he is now refusing to take the doxy - he says it made him sicker. The last 24 hours have been beyond all words in terms of psychosis/violence. Then all of a sudden he just snapped out. Friends that have had lyme say that is to be expected with doxy - it gets worse before it gets better. Does anyone know if Rituximab wipes out the potential lyme and/or lyme co-infections' autoimmune response as well?

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I don't think Dr. B is a lyme expert (he's not an LLMD), but I think he knows enough to test for Lyme (esp being in CT!). IMHO I would treat the Lyme (did he test for any coinfections like Babeisa or Bartonella?) before considering Rituximab. Rituximab may decrease the autoimmune response to Lyme (don't know why it wouldn't) but since it suppresses the immune system, I'm worried that won't be enough and it may make the underlying infection harder to treat in the long run.

 

I know Prednisone (esp. long term) is contraindicated in Lyme, and I would think Rituximab would be even worse (in terms of immune suppression).

 

If he is worse on the doxy it may be a herx, or he may not be tolerating it for other reasons. I know a LLMD could help you sort this out. Some also use herbal antibiotics.

 

Also, if tick borne diseases are your underlying problem, treating those may be enough, w/out going down the Rituximab road.

Edited by eamom
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I have been away from the board for awhile. I guess I was feeling downhearted about my son not getting better and discouraged over the inexperience of docs in treating his condition; yet, I stopped by tonight and saw this topic. I am amazed at the varied presentations of PANS and am heartbroken over how many children and families suffer intensely from this autoimmune condition. This board is comprised of an incredibly strong and resilient group of dedicated families who persist through the challenges associated with getting their children's health back. My son has been diagnosed with autism since age 2, (he is 27 now) but became suddenty and acutely ill overnight in June 2010. His PANS care has been a bit fractured but he has received prednisone orally (he improved until it was discontinued), IVIG (no improvement), and very many PEX treatments (no significant changes). He has had an extensive work-up genetically, biochemically, and microbally with various abnormalites that are not definitive for any one condition other than cerebral folate deficiency for which he takes leucovorin. He was "PANS Likely" on the Cunningham panel. Dr. T. refers to him as "PANS plus". We are still waiting to start the rituximab therapy that his local neurologist recommended. Its been several months since it was recommended, but he is falliing through the cracks in the system. I think my fears about rituximab and not hearing of any personal experiences has allowed inertia to set in. This is really not like me. The encouraging stories here inspire me to get back in the saddle again. My son's major symptoms are a movement disorder that now also severely affects his eyes. The other common symptoms of PANS are there too.

 

I would love to meet with Dr. Francovich since we live here in northern california, but whenever I have called Stanford for PANS help, I get turned away when I mention my son's age. I was unavoidably out of town for the northern california PANS conference and missed her and all the updates. Does anyone know how the summaries of the presentations can be accessed?

 

Any connections with other families who have had experience with PANS would be greatly appreciated.

Thank you.

Edited by momofadult
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Momofadult...

 

Here's a link to some notes http://latitudes.org/forums/index.php?showtopic=22653

 

There will be you tube videos eventually but I don't know when.

 

PANDASnetwork.org might also post some notes, but I don't know when.

 

Yes, I don't think LPCH would see an adult. I would recommend Hillpark (Amy Smith NP and/or Dr. Schweig) in Petaluma as PANDAS friendly (also Lyme friendly, and they see adults). They are an integrative group. Amy Smith is a PANDAS parent as well. She was the one who organized/started the Burlingame conference, and her son (off to USC in the fall) also spoke.

 

Where is your neurologist? There was also a PANS (30? year old?) adult who spoke at the conference. I think she was going to UCSF? Her name is Vanessa Vann.

Edited by eamom
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  • 9 months later...

Once you have insurance approval, consultation at Georgetown, infusions 4 Thursdays in a row. Many kids have some mild reaction on first infusion so they have to run it very slow. Some itching in her throat. My daughter had to stay overnight for first infusion, so they could run it very slow. She has been sleepy, but feels fine after i fusion #1. Recommend staying at university hotel. We tried to stay in Bethesda - it was inconvenient w/ unexpected hospital stay. Please let me know if I can help in any way

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