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TraceyB

Advice on IVIG and making sense of flare

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I am hoping to get some help making sense of our current flare. My son got PANS when he was three, but he really fell off a cliff two summers ago at age 7. It wasn't until last summer that we began treating it as PANS with Dr. P, and by October had determined mycoplasma and HHV-6 as triggers. Two steroid tapers and 6 months on azithromycin and his infection numbers were down to nothing and he was doing well (making new friends, laughing, his personality back). However, his IgG numbers, which were very low in October, continued to drop. We planned on doing IVIG this summer. In early June he had a tick bite with a bulls-eye rash and began treatment that day for Lyme. Unfortunately, he has been declining as the summer has gone on. He did two weeks on doxy, a week and a half off before we realized he was still being affected then two weeks on Ceftin. Last week he became very aggressive which had not happened since two years ago so we started a prednisolone taper. We were also just denied IVIG coverage by our insurance and are planning on paying for it ourselves. He just switched from Ceftin to Rifampin three days ago in case he has bartonella. On top of all that, he was stung four times by wasps last week (can that cause flaring?) which has restarted a major bee/hornet phobia and has him scared of being outside. He also just started saying he hates the feel of water which takes away our only activity this summer of swimming. He is scared of everything, says he "doesn't feel right" and has started saying he wants to "go home" which in the past has meant heaven. His sister also has an open sore on her bottom which could be staph (we are having it looked at today). Can this be causing the flare? I am a wreck trying to trouble shoot and keep my own mental health strong. I am anxious to do IVIG as soon as possible to alleviate his suffering and give him time at home before school starts, but I wonder if we have all the possible infections covered. Any thoughts? I would also love advice about preparing for IVIG. Did it help? How did you keep your child calm? Do they need other medications at the same time to make it more effective? Any questions I should be asking of his doctor? Thank you for your advice!

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I'm sorry! This sounds like an awful lot to be dealing with. Lyme is nasty and especially so for our fragile children.

I understand wanting to try steroids and IVIG to stop the progression of the illness right now. But steroids are contraindicated with Lyme, as it only further dampens his bodies own natural immune response allowing the bacteria to multiply further.

Also if you search the forum you will see there are lots of stories of IVIG being ineffective because of underlying Lyme. If your paying out of pocket you may want to consider making sure his body has eradicated the Lyme (and any co-infections) more thoroughly before jumping into IVIG.

Our LLpans doctor recommends many months of antibiotics for any tick bite and with a bullseye you have a pretty clear indication of an infected tick.

Are you giving anti-inflammatories and doing anything to help with detox from the  antibiotics?

We've always been nervous about the daily ibuprofen and never given higher doses for a longer period of time. For the past 5 days we've stuck on it 3x per day and it's having a tremendous benefit here. My 60lb son receives between 300mg in the morning and 250mg twice more each day. One of our pans doctors recommended we could go up to the 300mg every four hours for four days and the other doctor recommended 250mg, 3-4x a day for a full 7 days, so we've combined that advice and plan to continue for the full week given the tremendous improvement we are seeing. 

We are also about to start a steroid burst but we've waited more than six months to try to be certain we are not dealing with Lyme or any co-infections here. 

I think with Lyme the struggle is finding a LLMD and pans-literate doctor who understands treatment for both conditions.

Oh and yes other bug bites can cause flaring. My son develops a strong allergic reaction to bug bites and that always flares things up for him. Also, he has trouble with pools - even our own backyard salt water pool. Not sure if it's the chlorine or the bacteria or both, but I know lots of other parents report the same difficulty. 

You don't want to indulge his new fear of the outdoors but skipping the pool for a little while may be a good thing for him to see if he settles down. And I totally understand how sad that is. We're having the WORST summer ever here avoiding potential triggers :(

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Thank you so much for your thoughts! Now that you bring up steroids being contraindicated with Lyme, I realize I did know that at one point. I think we were so desperate to stop his decline that I ignored it. That is a really good point about IVIG. He obviously still has something going on, and it is going to be a lot of money. He takes curcumin and Aleve 220 mg twice a day as well as Copaiba essential oil for inflammation. Maybe we should up the Aleve? The only thing he takes for detox is NAC and I sneak epsom salt in his baths. What do you do? We do see a LLND and Dr. P. Good point about the pool. I think we need to slow things down, finish the steroids, stay home and see if he can stabilize. I wonder if the Rifampin is enough to also cover the Lyme in addition to bartonella. Ugh. I think us moms should earn honorary PhD's in PANS/PANDAS!

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Do you think you the aggression could be part of a herx? 

Our kiddo is now on Alinia and minocycline.  We have also found ibuprofen helpful.

But more recently we have been supplementing with Zen, which is a combination of GABA and L-theanine and (3 pills Over the day) and it seems to be helping even more than ibuprofen with mood.

 

 

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He seems a little better the past couple of days. Our naturopath said to give the Rifampin more time because she would expect to start seeing improvement around this time (day 7). It could have been a herx or that it just needed time. She also suggested L-theanine for the anxiety and I think we will try it today (trying to slow things down so we can see what is working and what might cause more flaring). I'll have to look at GABA too. My daughter has also been on antibiotics for her skin rash (staph?) since Monday and I really wonder how much exposure to her infection affected him as well as the wasp bites from last week. This whole thing is overwhelming at times. I am thankful for a bit of peace the past couple of days. Thank you for your suggestions!

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One more update: I just got a call from the pediatrician that my daughter's sore was MRSA. The doctor said my son couldn't be affected unless he touched it, but I'm not so sure. 

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My son still seems to be deteriorating (intrusive thoughts, terrified to be outside, rages, seems psychotic at times). His regular lab blood work came back showing negative for bartonella. Could he still have bartonella? Coudl this be from the steroids? Could IVIG get him out of this state or should we wait it out until he stabilizes? We did swab his nose to test for MRSA and are waiting for the results.

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Yes he can still have Bartonella even with a negative test, especially if your kiddo doesn't mount a strong immune response and thus doesn't produce the antibodies that the typical test measures. He can also still have Lyme and or Mycoplasma. These are all considered "stealth infections" and opportunistic. So if the body is stressed, they can come out of hiding and cause havoc. The first intrusive thoughts are heartbreaking. You might try supporting your ds with copying skills. There's a book/curriculum  on Amazon called the Coping Cat that you or a therapist could do with him. 

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Tracey, I would do the IVIG. My son had the treatment last week and we could see changes the first day of treatment with noticeably less anxiety and he just seems so happy, calm and "light," after the procedure, and it was wonderful. So fun to be around. Vocal tics (trilling like a bird resolved, and throats clearing and repetitive vocalizations decreased by 80%) After the second day, Evan had some nausea and a headache for about 2 hours in the middle of the night, but then it resolved. It has been 5 days since the treatment and aggression, hyperactivity, insomnia, OCD behaviors, oppositional behavior, and emotional lability have noticeably and significantly decreased. Vocal tics have resolved, teeth clacking in dec by 60% and intensity and frequency of head nodding greatly decreased. We went to Dr. K in Chicago. He has been treating PANDAS since 1998. He does IVIG treatments every week, on Thursdays and Fridays. He is familiar with all of the nuances of treatment and does an excellent job of monitoring each patient and making necessary adjustments for best possible outcomes. Not all IVIG is the same: the actual blood product (the way in which it is produced and the stabilizing agent,) the treatment protocol used and the way that the protocol is carried out, all highly influence the outcomes that you will get. You want a Pediatrician with tons of clinical experience to make sure that not only the treatment protocol but the individualized post IVIG patient care leads to the best possible results. 

 

 

 

 

 

 

 

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