Home » PANDAS, PANS, and IVIG treatment

PANDAS, PANS, and IVIG treatment

I have been getting lots of great emails from people all over the world struggling to get help for their children. I get a lot of questions about PANDAS, PANS and IVIG. IVIG was our choice of treatment for Joshua. One that we feel literally saved his life.

Many physicians elude to the fact that it may not be safe as it is a blood product. IVIG is the pooled antibodies of about 10,000 people. Those antibodies are tested for viruses and then cleaned and spun down into a powder which is then reconstituted and given intravenously. The dosage for PANDAS, PANS with IVIG is high in order to shut down the bodies production of antibodies therefore halting the abnormal PANDAS cycle.

I have asked numerous doctors about the safety and those who are very familiar with the process are comfortable with its safety. I have read arguments against IVIG who feel it is risky due to viruses such as hepatitis. I guess maybe that’s the test. If someone had told me I could have the IVIG and it would heal all of the PANDAS symptoms, but we would likely contract hepatitis, we would have done it….or at least I would have, I can’t speak for my husband. I can treat hepatitis….PANDAS is just a monster that rips children and families to pieces with no end in sight….at least that is where we were.

Anyways, so you have an IV drip for 5-6 hours a day, for two days. The third day you want to see a massive headache…that is a great sign. Unfortunately, it’s like a migraine on steroids for the child. We were given steroids in case it got bad. It seems that the massive headache can also be a sign of IVIG induced meningitis. The headache lasted about 10 hours for us and then took a day or two to feel normal again. We left Joshua on antibiotics after the first IVIG because everytime we tried to decrease it, we had problems. At 12 weeks, he had severe problems, the tics and rage returned (though not near the intensity as before) and we completed a second IVIG. We were much more prepared. It was after this one that we lowered his antibiotic dose and he could tolerate it.

Every doctor seems to have their own number for success. Some say they should be 90% of their pre PANDAS norm. We have no idea what Joshuas baseline is. If he should begin to decline again, we will be right there waiting for our next treatment. Joshua is not a fan of needles, but he knows what will happen if he gets sick and doesn’t have access to this life saving treatment.

39 Responses to “PANDAS, PANS, and IVIG treatment”

  1. Kristin says:

    IVIG is intense. My daughter went through it for three years, every three weeks. I did not know that the headache was a good sign. I took it while pregnant with my two youngest children, and the flu-like symptoms can be rough.

  2. admin-JMP says:

    I hear it’s harder on adults than children….thankfully for the kids…not so much for you.

  3. Alisa Van Dissen says:

    Our 10 yr old son Carson is now a patient of Drs. Kiki Chang and Jennifer Frankovich at Lucille Packard PANS clinic at Stanford. He has been treated for PANS for nearly two months now, on antibiotics only. We saw 5 good days in the beginning, but a decline since then. The doctors are now recommending IVIG. The treatment process as you have described sounds dreadful for any child and as a parent I am unsu of the efficacy of this treatment Although, nothing has helped and it has been over 3 years of rapidly declining health for Carson (and hell for us). Plee share with me anything you can. We are new on this journey and I have very little hope that he will ever return to the sweet creative intelligent articulate boy we once knew. However as I write this post on Thanksgiving 2012 I thank God for the child God has given me and the incredible teacher that he is.

    • admin-JMP says:

      I would have never chosen this for my son had I had the time to really think it through. I know what you mean by a hellish life with the shell that used to hold your child. I was so desperate, I just took a shot at something I thought might help. Soooooo glad I didn’t have the mental capacity to think because it was the best decision we ever made. Even after the IVIG, he slipped on full strength antibiotics and began ticcing and OCD and rage again…we did another. That was almost 2 years ago.
      We live in a society where there is a pill for everything, and it usually works pretty quickly. IVIG is different. It takes a long time, which is frustrating. However, time has carried us to this point. Straight A’s, sweet, loveable child and brother….I couldn’t ask for a better child. OK, he’s a normal 9 year old–he fusses with siblings every now and again and still can’t stand to hear them chew…but that’s it. His life is completely different…he has a shot, a great shot at a normal life. If he were to get sick again, I would have NO hesitation to get another IVIG.
      Having said that, I believe we are dealing strictly with strep. There are a lot of parents on the boards that have children with lyme who say IVIG doesn’t help. I have no experience in that area, but that is the only thing I might ask about. I had none of this knowledge when we went through it….thank goodness.
      There are ways to help with IVIG. Hydration is extremely important and can really cut the side effects. If we did it again, I would probably ask for a bag of fluids after the infusion. Our first one was really bad and after that we asked our doctor for steroids to help with the headaches.
      As you well know, this is a nasty disorder though for us it really was a blessing…it was treatable. I can’t imagine living like that with no chance of change.
      Happy Thanksgiving!

  4. Thalia says:

    We’ve also started with Dr.Francovitch and Dr.Thienemann as the psychiatrist at Lucille Packard.This started for us on Oct.12th.We’re doing the azithromax and We did the IVIG two weeks ago.He came out even more nervous about germs and spit.He sees spit coming at him and he thinks the germs are taking away his imagination,and he’s alternately terrified and angry.we have some moments if relative playfulness and normality in the house.We cant go outside without a panic attack,and now he’s running away from us in the house this last week.We started him on Zoloft a week ago and maybe that’s making things worse,hard to tell.Today was the day to go up to 25mg,and he’s crazy aggressive.But We’ve had other crazy aggressive times in the last month.I need some hope,but can’t find any.

    • admin-JMP says:

      The first 2-3 weeks for us after an IVIG were the WORST…. It got better for us after about week 3..but still had crazy spells for awhile. We were on Zoloft before the IVIG. It didnt work well for us. It takes time for the IVIG to work…..up to 10-12 weeks. It’s hard to feel helpless but hang in there.

  5. thalia says:

    we cut the zoloft back to 1/4 of 25 mg,and did some cognitive therapy,and had a visit from his teachers.He’s so nervous He can’t attend a tutor or school.We visited school on Friday,and he talked to his best friend from inside the car,and eventually got the courage to open the door.after that we had a good 6 hrs without obsessing and having fun( in the house). Saturday he was almost normal the whole day(but still inside). Today,crazy rage again. But even then we had 3 or 4 hrs of relative normalness.I wonder how he’ll do if we just get rid of the zoloft,or is it helping him?We just finished our 3rd week of the IVIG.

  6. Jody says:

    We are going on two weeks Post IVIG. Had the massive headache (still has head pain when he coughs or sneezes) and vomiting in first 24 hours. I was actually thankful for the headache as i had heard it was a good sign. Within 32 hours tics were completely gone. Sunday his handwriting came back better than before onset four months ago. His personality seems to be coming back like the fog in his brain is lifting! BUT the last two days weve noticed mild facial and vocal tics coming back….not nearly as severe but they are back. πŸ™ Im so frustrated and sad, even though i realize this can be normal! I’m praying this is a normal up and down Post IVIg. We have been approved for two more rounds and doc wants to do 6 weeks apart! Have you all seen more improvement after each infusion? Have you all seen the “turning back of pages” of the symptoms like this where it was marked improvement from day one and then symptoms return? Please tell me there’s hope they are temporary and we are just experiencing a few bad days here! Oh… And anyone else see allergy symptoms return Post IVIg? I’ve heard this is a good sign also?

    • admin-JMP says:

      Yes…we had a great week, then an off the wall week. The tics would morph into different tics and vary in intensity. We had turning back the pages as well, but it would be days at a time instead of hours. It should level off by 3 months. Our ivigs were further apart. Hang in there. Check into those allergies though..they ended up playing am important role in treatment.

  7. jody says:

    Thank you for the response! I am hoping that is the case and we will see improvement with each infusion. Can you tell me what you did as far as the allergies/ or mean as far as they were important in treatment? Diet? Allergy meds? interactions? Thanks!!!!! Im a little scared to put him back on his Advair and Singulair again- as I just dont want anything contributing to another downward spiral!!!! He did SO good the first 4 months of onset as far as allergies completely disappearing! Has me quite puzzled that they are now back Post IVIg ( Im sure as you all have been puzzled a time or two with this Monster πŸ™‚

    • admin-JMP says:

      Even though he wasn’t a very “symptomatic” allergy child, I had him tested for foods and inhalant allergies and “wow”. Removing his food allergies made lso had some other stuff cme up in his bloodwork that the doctor recommended, eliminating gluten from his diet…made huge changes. I think underlying allergies add to the inflammation problem for these kids.

  8. Susan Bourne says:

    We are about to embark on our first round of IVIg with a pediatrician and an immunologist, neither of whom has ever done this for PANDAS before. *sigh*

    Thankfully, we are being guided by Dr. Tanya Murphy (who we briefly saw a couple of months ago once), but, I feel like I am the quarterback here… since she is 4.5 hours away so cannot be our lead MD.

    Can you tell me when and how much/many fluids I should start pushing into my 7 year old daughter before/after the IVIg?
    Thank you so much for any information and help.

    • admin-JMP says:

      I know it’s scary when you feel like you’re calling the shots, but be so thankful that you have doctors that will work with you….that is so rare with this diagnosis
      I just gave him 1/2 juice and 1/2 water to drink the day before and reminded him to drink every 15 minutes or so. They had a slushie machine and juice boxes there so I kept feeding him those. I have heard of people asking their doctors to run a bag of fluid a after the ivig..we never did that though.
      I hope all goes well. Remember, it gets a little crazier before it gets better, hang in there.

  9. Tracy says:

    My son will be beginning IVIG soon. I’m scared to death now that we’ve finally gotten insurance approval. I feel like I have spent so much time pushing and pushing for this to go through that I haven’t really thought about it actually being approved. Now, I’m panicking wondering if I’m doing the right thing.

    • Joan says:

      How did you get your insurance company to cover IVIG fpr PANDAS ? We are about to begin the fight. I just don’t know where to start. He is 26 and has insurance coverage through Heathcare.gov. Any information is appreciated.

      • admin-JMP says:

        We never wrote the word PANDAS. It was autoimmune encephalitis. PANDAS is not yet viewed as a diagnosis for ivig…AE sometimes is.

  10. Laurie Lamantia says:

    what type of Dr. ordered the treatment.

  11. admin-JMP says:

    Pediatric psychiatrist

  12. Autumn says:

    So does the ivig work? There is a lot of info about what to expect but then what? My son’s headaches from the pandas have not let up for 5 months. We are on clindamyacin after 4 mos of augmenten, but the headache is still there and he bumped the back of his today and that sent his front of his forehead into severe pain (where he always has the pain). Is ivig our next step? What gets rid of the symptoms of the pandas?

    • admin-JMP says:

      A fellow PANDAS mom recently told me she heard from a researcher that 1/3 of PANDAS patients get better with IVIG, 1/3 temporarily get better and 1/3 have no change. Might I also suggest looking into Lyme. It seems to frequently (not always) go with PANDAS and it causes headaches as well.

  13. Lori Bauman says:

    My son is 3.5 years old and complains about his head hurting also…his cunningham panel was extremely high in two of the 5 tests which (from what I understand) meets criteria for encephalitis. My biggest challenge is his extreme temper tantrums and tics. He is on Cephadroxil 5ml. I would like to try the IVIG but I don’t fully understand the risks and I don’t know a doctor who would help us with this…any feedback is greatly appreciated!!

  14. Sierra says:

    I know this discussion involves IVIG, but I’m just searching for other parents who have children with PANDAS to talk to. I’ve combed nearly all the articles on the internet and have searched for facebook pages, and I can’t seem to find anyone with recent updates, this is the first “active” posts I’ve found involving parents. My daughter was recently diagnosed with PANDAS and I’d like just to have a place to talk about it with parents that understand it. Do you know of any pages? Again, I’m sorry for asking here, but I feel like a lone fish in the sea. Thanks for you time, Sierra!

    • Alisa says:

      Sierra, please feel free to email me or call. You need support. Check out Facebook groups related to PANS/PANDAS. There is also a once a month parents support group through Stanford PANS Clinic. It’s the 1st Thur of each month. You can find more info at pansclinic@stanford.edu
      You can video conference into group if you don’t live in Bay Area.
      All the best. There is hope!

    • Sabrina vierling says:

      There is a San diego pandas page that is active right now on facebook

  15. MJ Keatts says:

    My son has PANDAS and high-functioning autism. We are seeking approval for IVIG. My son has a “movement disorder” caused by PANDAS and he never stops moving. He also has a mood disorder, which he was diagnosed with at an early age. His aggression has gotten much worse. Antibiotics have not helped. What dose of IVIG was given to your child and over how many days? Our doctor has sought approval for 15g/1xday every four weeks, but I don’t know for how long. The PANDAS Network calls for 1g/1kg/day x 2 days. There is a big difference in these two dosings. Anyone have any experience on this and can provide feedback? Thank you.

    • admin-JMP says:

      It might be helpful to join some of the PANDAS facebook groups such as PANDAS PARENTS.

    • Denise Haire says:

      Dear MJ:
      Many of the IVIG companies will help your son’s doctor with dosing questions/issues. I have found that the IVIG reps and IVIG pharmacists are the most knowledgeable since this is what they specialize in. The IVIG companies can also be very helpful in trying to get coverage. If your son’s doctor has a company that he regularly works with or refers patients to, you may want to contact them directly with questions you have.

  16. Sue G says:

    Hello, I have a son with Pandas dx about 2 years ago. We are in our third flare that started about 6 weeks ago. My son has been on Zithromax for 2.5 years and naproxen on and off. We are
    Seeing Dr Kyle Williams at MGH in Boston. He recommends we try steroids next and then perhaps IVIG. I’m terrified of both. My son had horrible reactions to SSRIs and I’m scared that the steroids and IVIG will cause a rebound or worsening of his symptoms. I’m also looking for a parent support group. This disease is very isolating.

    • Hi
      Can we talk. My son will be going to Mass General next week & seeing Dr. Geller privately then Mark Pasternack in July. I need to speak to someone who has gone through those & someone who knows more then I do. Are you happy with Mass General? You mentioned your son having this for 2 years. I can give you my phone number what ever is best for you. Please respond back. Judy

      • Sue G says:

        Hi Judy, I would be happy to talk to you. You can email me your number at sueglasser@comcast.net.

      • Lisa says:

        We see Dr. Geller and have for the past year. He is WONDERFUL. My son is also treated at Children’s. He has been on Zoloft, monthly IVIG since August, clondine to sleep, Azthromycin, probiotics, B complex, Omega3. He was also on oral prednisone.
        His symptoms were completely gone by January. He just had open heart surgery and contracted a virus while in the hospital. All his symptoms returned. We are now doing a four day treatment of IV steroids.
        You will love Dr Geller.

      • Tricia says:

        If you still need to talk your May contact me as well we have been dealing PANDAs for three years, it can be hell.. Most people don’t understand at all what we are going through my cell is 317-200-1170

    • Tricia says:

      Hello, the IVIG sounds scary but it is a lot safer than SSRIs. We have seen our son come back to life. We are two weeks post IVIG, but this is as hopeful as I’ve been for two years. We homeschool him in hopes of keeping away from strep. We also had his tonsils and adenoids remove last Christmas. This past year we only had one flair post tonsil removal. Such an improvement vs 4 flairs in a year.. Good luck with everything I know how this can bring you to your knees.

      • Jamie says:

        I was curious as to how your son is doing now? We are considering IVIG and have just begun our research. Our daughter began with symptoms this past October and we were very proactive because the onset was so abrupt. We are seeing Dr.Murphy in Tampa. Our daughter initially had incredible results with Zithromax and began to plateau with improvements. We tried a 5 day burst with prednisone, but by day 2 we saw such regression in the progress that we made in addition to her sibling testing positive for strep. We stopped the prednisone and switched to augmentin and are still stuck in the same place. She has also had such fatigue and a persistent low grade fever. MRI and spinal tap are scheduled and follow up appointment with Dr.Murphy next week to discuss IVIG.

  17. Lisa says:

    Just wondering if anyone has been on cellcept? This is the next phase the neurologist wants to try.

  18. Margie P says:

    My 17 year old aggressive son with both autism and PANDAS had his first IVIG 2 1/2 weeks ago. He is still lethargic, not eating much. Going to school but face planting in his bed when he gets home. Giving him motrin 600 mg 2x day, azithromycin. Had .25mg klonipin to try to calm down the OCD. Does anyone have any thoughts on what supplements might help, what supplements (he takes a few) might make things worse?
    Is his reaction a good sign?

    • Dev says:

      My son is 17. Too . Just recently got a doctor to fight for IVIG. Not gotten it yet because on mercy of BCBS of MI. I heard d that CBD oil patches work so gong to try those after treatment. No THC in them.

    • Dev says:

      My son is 17. Too . Just recently got a doctor to fight for IVIG. Not gotten it yet because on mercy of BCBS of MI. I heard d that CBD oil patches work so gong to try those after treatment. No THC in them.

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