Pandas - When to move on to IVIG after trying Augmentin?

[MC2]

DS age 9 was diagnosed PANDAS last month. He has done Keflex 21 days (helped a little for first 5 days then no further improvement) then a 5 day steriod burst (better but far from himself), and is now on day 13 of Augmentin (8 more days left). He also takes 880 mg Naproxen daily. He has significant joint pain, anxiety, dialated pupils, adhd like symptoms, defiance, and especially mental/cognitive exhaustion (oppositionality, difficulty with any sort of academic work - he hasn't been to school in 2 months). Wondering about 2 things: 1) at what point in time will we have seen all that Augmentin can do for him? I do not understand how long it takes for antibiotics to do everything they can do??? and a related question 2) at what point do we move on to IVIG? He had elevated strep antibody titers, but the Cunningham Panel is not back yet. Most other tests were basically normal. We just want to do whatever we can for our poor guy, not to mention everyone else in our family. It feels like the whole family is falling apart at the seams. We keep asking our doctors but they say the "cannot predict improvement" which of course we understand but also would like to understand what the larger game plan is and at what point the different tools will be brought to use in this all-consuming situation.

 

Thankful for any guidance/thoughts/experiences.

[Gpookie]

We moved on to IVIG fairly quickly for both boys. About 3 months on augmentin, then tonsillectomy then HD IVIG exactly one month later.

 

Now on 3rd year of treatment dose of Augmentin and Biaxin, second winter on monthly LD IVIG. Boys at 200% and doing fantastic. (LD IVIG was to address inmune deficiency which had led to the recurring infections in the first place.) Sons are 9 and 10.

 

My advice is follow your doctor's advice and make sure you know what you are treating (i.e. do you have the correct antibiotic based on cultured bacteria? Is it really/only/just PANDAS?), also, give the various treatments time to work...

 

Bottom line...if it is PANDAS, it will at some point respond to PANDAS treatment.

 

It does get better. Hang in there!

Edited January 25, 2017 by Gpookie

[confusedmom]

Hi there, I just wanted to say that I am in the same boat as you. My 7 year old got strep on 12/3 and started having tics that day and then all the other symptoms progressed. We are on Keflex and did a steroid burst. The steroids sort of helped the rage episodes go away, but we are still dealing with adhd symptoms, tics, intolerance for his younger sibling that involves him frequently screaming at brother, difficulty sleeping and staying asleep despite taking melatonin.
Our blood work showed he also had an active mycoplasma pneumonia infection. They put him on another antibiotic to treat the infection and it made his tics worse and behavior worse.
We saw an ENT about possible tonsils removal, but they want to wait 30 days and see if his symptoms improve with the treatment for pneumonia.

We have missed a month of school. I haven't sent him since his tics involve him licking things and we haven't wanted to risk more infection.

We see our neurologist this week and I am waiting to see what they suggest next.

I am a wreck. I can't stop crying all the time, especially when people ask me about how he is doing. I have to go to a school meeting this week to address his absences.

[mama2alex]

MC2 and Confusedmom, I'd highly recommend comprehensive testing for any/all infections that could be involved. This is often more complicated than "just strep." A good LLMD can test for all of the following plus: Lyme, Bartonella, Babesia, Mycoplasma, Epstein Barr virus, HHV6, and Candida overgrowth.

 

Once you've done all the testing and had a comprehensive evaluation by an LLMD, you can really target the antibiotics and make sure you're not missing anything right from the start.

[MC2]

Thank you very much for your answers and insights. I will definitely push on getting those additional tests done (I think half of them we do have....) Mamma2Alex I am so sorry, I know exactly how you feel about the crying all the time especially when people ask after him. I do the same thing. I know it is the same for many families on these pages. I am not sure I could have imagined such a horrible medical illness: misdirecting symptoms, steadily worsening and expanding (whack a mole comes to mind), lack of understanding about what is happening even from people in our own families, tests and treatments which do not appear to be definitively agreed upon by the very few health professionals/resources available to combat this.

 

Our latest challenge is that he has gotten so irritable/anxious/oppositional that we have major challenges getting him to his doctor apptmts. We try everything (long lead time, short lead time, rewards - we are out of ideas on those and have given in to some absurd rewards). Today he was so afraid/enraged we had to call the police (he finally went willingly to the apptmt before they arrived). And then at the apptmt, while the doctor said that she can see he is getting worse and needs more treatment, she said we need to have him willing to participate in order for them to treat him. I have never felt so helpless or frustrated.

 

So my new question: how to convince a child to participate in dr apptmts, not to mention upcoming MRI and hopefully upcoming 2 day intravenous steriod/IVIG treatment? I asked dr about a Benzo and got attavan. I am surprised at how little there is in place (even at a PANS specialist doctor/clinic) to help with this catch 22 problem. The dr said "psych wards won't give IVIG and regular hospital wards (for IVIG) don't like our patients."

[Sirena]

Hi Newbie,

I have a couple thoughts on getting the compliance/participation. It seems that often our kiddos' "fight or flight" reaction is hypersensitive-hyperactive and beyond their physiological control, so anything that might trigger it is going to get you into the battle zone rapidly and unwittingly. So, preparing ahead by thinking about how to keep kiddo soothed will help. So, if you've had to resort to calling the police, your going to have to prepare in the future on how you can make the experience 5x more fun/positive than however "bad" it seems to him. So, while in a normal situation being over the top accommodating would be looked at as encouraging bad behavior, here you are dealing with a brain on fire that doesn't work normally and can't be expected to handle even minor stress well. With our kiddo, when we started this mess, I took him to buy a small lego set after getting his blood drawn. He's Lego crazy, so this helped. Little did I know how many blood draws were to follow!!! But we have kept up this tradition and he earned larger Lego sets (or playmobile) when he had other procedures like IViG, MRI, EEG, etc, etc. Often he will pick out the gift ahead of time so that you can use the anticipation of something good happening immediately after he does what you want him to do. I hate to think how much we have spent on Lego, but it has REALLY helped him cope and find an "upside" to the whole mess. One other thought, these kids often secretly blame themselves for being ill/behaving badly and it's very important for their psyche to externalize the illness. So, you might want to share that you know it was the PANS itself doing a number on his brain that made it so hard to get into the car to go to the doctor, but that you understad that it was not "him" misbehaving. So, you are going to devise a plan to help fight the PANS/Bad antibodies/or whatever you call "it." You can get his input or surprise him. For example, I'm imagining a colorful gift bag with balloons attached and perhaps some small (dollar store?) gifts and kiddo gets to open the first one when he is buckled in the car. I'm sure you'll know what your kid is likely to respond to positively. Lastly, giving kids lots of opportunities to feel "in control" in this crazy situation if helpful to them and the situation. So, choices like, "Do you want to wear or not wear your coat in the car?" Would you like the radio on or off? Do you want to take the ipad or not? They need empowering in this difficult situation...Hugs, hope something in this helps...

[ABdualPT]

My son was diagnosed on July 12. We are moving to IVIG on Aug 15, after having done antibiotics which helped a bit and we are now in the middle of a 5 day prednisone burst, which is helping. With any autoimmune response in the body, treating as early as possible yields the best results.

[Getwellsoon]

We were about to start treatment for PANDAS and got back an Igenex lab that showed equivocal for Bergdorfi Lyme plus what they call "the dinosaur bones", but not the other typical tic co-infections. My d has been suffering horribly from the PANDAS symptoms and has never really had the traditional body complaints that you hear about with Lyme. I really want to move forward to resolve some of the PANDAS symptoms, perhaps IVIG or plasmapheresis, as she has suffered for years with the eating and ocd issues especially. We cannot get her to take pretty much any medicine for this by mouth as well. Can we treat the Pandas as primary and the Lyme secondary given the symptoms seem much more lined up with PANDAS? Labs showed antibodies for about six things associated with PANS/PANDAS btw.

Edited August 8, 2017 by Getwellsoon
forgot to put something in.