Backsliding after IVIG?

[Williams_Mom]

My son, William - age 11, had IVIG on 7/15 and 7/16. He got through it OK (massive headaches and nausea - handled with Benedryl and Motrin) and slept a lot the week afterwards (but then, that might have been the Benedryl..). I called the neurologist today because I had to adjust the time of his follow up appointment (it is this coming Wednesday) and the medical scheduler asked me how he was doing. I raved about how well he is doing and how thrilled he and I both are. Half an hour later, he started back up with some of the behaviors that he had before IVIG (that I hadn't seen since then - hand washing, coating everything with hand sanitizer, and being anxious about contamination. I am so sad... I thought that the behaviors were gone (he still had a few things to "work on" but he was sooooo much better).

 

Has anyone else had a child that seemed much, much better right after IVIG and then had a backslide? Was it permanent or was a short-lived thing?

 

FWIW, he is still on antibiotics but no prednisone. He has complained of a weird issue with his throat since before IVIG and it hasn't gone away - it is kind of like a big time over production of mucus (sorry if that is TMI) and he tells me every now and again that his throat hurts - which of course freaks me out.

 

I would love any BTDT (or not) thoughts...

 

Thanks!

 

Sally

[Johnsmom]

We have been dealing with a lot of ups and downs since our ivig 6 weeks ago. Yesterday I was at my wits end with ds"s behaviors that included irritability, obsessing about video games, no motivation and jerky body movements. I used to be good at journaling but have gotten lazy with it. I pulled out dr ks post ivig sheet, re- read it, said a prayer and wrote down my thoughts and my sons behaviors. I felt better after that.

As for the throat thing, we have been dealing with that since the 4 th of July when we visited urgent care in a panic with a possible strep throat infection. It wasn't strep.

For 3 weeks after that, ds walked around with a puke bucket saying he felt like he was going to throw up. Then he didn't want us to leave his side at bedtime. He would tell me he was getting a bad oj tastein his throat. I consulted w/ dr k on possible acid reflux from the augmentin. He said it was very possible and suggested more probiotics and an antacid. I have only upped the probiotics. Last night he went right to sleep, tonight took a while but not too bad and he didn't complain about his throat. Your son might be experiencing the same thing. I give my son sach boulardis and floragen. My son never had any problems like this reflux before ivig.

I have been very frustrated these past 6 weeks but trying my best to keep positive. Hold on tight, I know what you are going through. My prayers are with you.

[EAMom]

You might do throat cultures (do the 72 hour is the rapid is neg) on siblings and other household contacts, just to make sure there isn't some strep exposure.

 

What is the dose of abs and your son's weight?

[LNN]

We have been dealing with a lot of ups and downs since our ivig 6 weeks ago. Yesterday I was at my wits end with ds"s behaviors that included irritability, obsessing about video games, no motivation and jerky body movements. I used to be good at journaling but have gotten lazy with it. I pulled out dr ks post ivig sheet, re- read it, said a prayer and wrote down my thoughts and my sons behaviors. I felt better after that.

We are 6+ weeks post-ivig and I am right there with you. Some days I've sent emails with joy over improvements and today I had to be talked off the ledge, tears flowing, because of sudden struggles. It feels like being at the beach - some waves make you smile and you drink in the smell of suntan lotion and the sound of the gulls and the warmth of the sun, and then all of a sudden a big wave comes and knocks you off balance and you find you have a pound of sand in your bathing suit and salt water in your mouth.

 

None of what's happening is making any sense to me. "Turning back the pages" just isn't a good enough explanation. What the heck is really happening? Is this a failure? A temporary set back? Is there something going on in conjunction with the Pandas (lyme, exposure?). I try not to look at any one day and try to assess a week at a time. But today has me feeling pretty low. Let's all hope our kids catch that break they so deserve - soon!

[smartyjones]

None of what's happening is making any sense to me. "Turning back the pages" just isn't a good enough explanation. What the heck is really happening? Is this a failure? A temporary set back? Is there something going on in conjunction with the Pandas (lyme, exposure?).

 

 

LLM - i have really no knowledge or experience with ivig - so i have not really specific comments on that and turning back the pages but have been trying to understand the herx phenomenon -- which i believe is the same. in alternative medicine, it's a "healing crisis" and is used really describe reactions to various types of medicine and procedures/treatments - not limited to specific bacteria or diseases. generally, alternative medicine revs up the immune system to take care of the problem. it's believed that the illness symptoms one experiences are the result of the immune system actions to clear the infection.

 

my son is currently experiencing a healing crisis i believe due to an antiviral we introduced. and boy, is crisis the correct word. i don't know that the symptoms we've seen would be due to his body fighting this virus -- it's been some general ramp up but a new intense contamination OCD we've never seen before.

 

i am curious the role of the BBB in this. i wonder if the antibodies are always circulating in the body and the key to wax and wane without specific strep exposure is the permeability of the BBB -- often due to other things. i found this from a possibly not so reliable source (possibly old study) and didn't even write it down but thought the concept was interesting. "the primary factor controlling the passage of bilirubin across the cerebral capillary is in the plasma, not in the BBB, per se."

 

perhaps the influx of antibodies in the blood from ivig itself creates permeability in the BBB and the exisitng problematic anti-neural antibodies flood the brain creating ramped up symptoms before the good effects of the ivig are registered.

 

why are people using steroids and motrin after ivig? could it be that it reduces inflammation in the BBB? does dr K have an explanation for the turning back the pages?

 

for my son, he is cycling through behaviors fairly rapidly. and strangely, he's always - pre-pandas diagnosis and even presentation - had potty issues. last week, with intense contamination fears on food, he was peeing happily and independently. this not due to other contamination fears, just happily taking care of business. so very odd.

 

are you seeing anything that could be odd resolutions through the intense symptoms?

Edited August 3, 2010 by smartyjones

[LNN]

does dr K have an explanation for the turning back the pages?

 

are you seeing anything that could be odd resolutions through the intense symptoms?

Smarty,

I'm sorry your having your own crisis. It's just exhausting. Thanks for the food for thought re: the BBB. I try to wrap my brain around it, but some days, it's hard to feel scientifically curious when I just want to pull the covers over my head and pretend my son is baby again, before I ever knew about any of this. Today was one of those days.

 

I've never heard Dr K's medical theory on what "turning the pages" actually is. And I've never been able to get anyone else to explain it either. It's sort of a black box, and I often feel like I'm in the 15th century when it comes to this. I never have the feeling anyone understands why or how IVIG is supposed to work, only that it does seem to help a number of patients. It's not something a Type A control freak like me finds very comforting, especially at dark times.

 

We are seeing resolutions of things. That's easy to forget sometimes. I'm not sure if it's from the IVIG or simply an episode waning in it's natural course. My real goal for IVIG was a re-boot to make this winter easier, so I won't know if it helped in that way for some time. But yes, things are generally better than they were a few weeks ago.

 

Now here's the weird thing...for the past two weeks, my son has been doing some pages from last year's school workbooks as a way to get his brain back in gear for school. He's always been strong in math (reading is his nemesis). But in the past few days, it suddenly got very very hard for him. It was scary. This morning, before my last post, I had asked him to do 5 simple math problems, with Dunkin Donuts as a reward. It took him 10 minutes, most of it spent with his head on the table, whining, negotiating, arguing and telling me it was too hard. I gave him Motrin (we've been dosing 3x/day for the past two weeks to help with mood) and we went to DD. An hour later, I asked him to do another 5 math problems. It took him less than 2 minutes, he banged it out with hardly any hesitation, and looked at me like "why was that so hard an hour ago?"

 

So something inflammatory is wreaking havoc and at this point, I'm beyond caring what that something is. My son's been on 800mg/augmentin daily for 10 months. His past three episodes in that time have been from exposure, not full infection. I just want him back. I get to see glimpses of a bright kid, like this morning, and then throughout the day, he drifts away. I can now tell when the motrin is wearing off. It's like clock work. It's like watching alzheimers take over - his cognitive abilities change that drastically from "on" to "gone". (these rapid improvements, in conjunction with his amazing improvements on prednisone tapers and long term high dose abx, to me suggests that Lyme is not likely, but I haven't ruled out an Igenex test).

 

If anyone has any good info on anti-inflammatories, would love to hear it (but it has to be a pill - neither kid will touch food that is remotely healthy, so no natural flavanoids or dietary changes for them - if it can't pass for junk food, it's doomed).

[Tenacity]

No answer. We are in the same boat!

 

Three and a half months post-IVIG, and what a roller-coaster! Several times I've thought, "This is it, we're done for," only to see something entirely different happen next -- and yes, sometimes a really good thing!

 

I'm not knowledgeable enough to say just where the line is, but I think you'd really have to go for at least a few weeks of stasis or progressive deterioration before you could say with any confidence that the roller-coaster ride was over.

 

This past week my son(11) has been stricken by terrible contamination fears -- to a degree we have never seen before. I found him one morning before dawn, sitting on the edge of his bed wearing baggies on his feet, rubber gloves on his hands, an apron, a towel mask on his face, and clutching a bottle of household cleaner in his hands. His room is horribly stuffy, but he can't bear to have the window opened, for fear of germs coming in to attack him. (Kind of ironic, given the etiology of this illness!)

 

On the other hand, yesterday I heard a few faint syllables of laughter (when his younger brother(9) came home from camp, with a big bug bite smack in the middle of one buttock) -- after 9 months of total mutism! So I'm not giving up!

 

Tenacity