I can smell the IVIG on her breath

[heatherdawn]

My dd9 started with vertigo and general sick feeling just over three weeks ago. Within 36 hours, besides unable to walk straight, her jaw starting tightening, teeth chattering, and skin sensitivity. The ped said "virus". Over the next 2 days her eyebrows were raising uncontrollably and her whole body was shuddering like she was cold every few seconds to few minutes . . even in her sleep. So she couldn't sleep for three nights and I finally took her to the ER (on the fifth day of her symptoms starting). By this time her emotions were on a weird roller coaster and tics in her whole face.

 

They were smart enough to test for current strep and past strep, which was negative. So they sent us home with a neuro appoint in 2.5 weeks and no explanations. Fortunately, we got an appointment with dr. Rao, immunologist the next day. Thank God for Dr. Rao who was very knowledgeable and tested her for myco p and said she has a chronic infection and therefore PITAND.

 

Meanwhile, waiting for test results and treatment (other than antibiotics) seemed to take forever. After three weeks of her physical symptoms growing through her legs and feet, hands and arms; and her emotional roller coaster turning into extreme depression and anxiety, I begged dr. rao and his office to get us in asap for ivig. (the steroid had bad side effects). They complied and now its two days later.

 

I was ill prepared for her fever, nausea, and extreme headache. She will only take motrine and her clonadine (calms the shaking so she can sleep) and nothing else. She is in tears and wishes she never agreed to do this treatment. Anyway, the smell of what I assume is the IVIG is very strong on her breath. Does this happen with everyone?

[peglem]

My daughter has had a lot of IVIGs and I have never smelled it on her breath. What does it smell like? I can smell infection on my daughter's breath. Is it possible that she has some kind of infection that the immunoglobulin is attacking?

What I have noticed with most of my daughter's IVIGs is that her urine and feces smell "mediciney" for about 1 day.

[GraceUnderPressure]

Wow, heatherdawn, we were there getting IVIG on Friday, too! I'm sorry we missed the chance to meet each other!

 

My ds18 got 1gm/kg infusion over a 4hr period - I wish we could have done it over 6 - 8 hrs as that's said to cause less of these side effects. The headache began Saturday around 4 or 5pm. By midnite, he had thrown up. He looked awful this morning & wasn't sure if he was done being sick, but slowly improved as the day went on & believes he will actually be up for doing his tae kwon do class Monday afternoon.

 

I had him drinking plenty of water, plus started him on benadryl & ibuprofen the night before & have tried to keep him on it ~every 4 - 6 hrs since. I searched the Lyme & PANDAS forums for ideas of things to help him & noticed this mom's recent post - http://www.latitudes.org/forums/index.php?showtopic=13380&st=0&p=111044&hl=+ivig%20+headache%20+alka%20+seltzer&fromsearch=1entry111044

 

Seems detox can be really important for getting relief, though there were a few other posts that came up in my search where their child was given a migraine med that helped alleviate their headache. Hope your dd is feeling better, but if not, hope you can find something helpful for your dd in this! Dr. R did say to call his office if the side effects were bad.

[heatherdawn]

peglem - her breath smell medicinal, like what I imagine the stuff in that glass bottle smells like. and her breath still smells.

 

grace - I agree. 4 hours seemed to short. I will ask for 5 or 6 next time also. Hopefully, we won't need a next time, or is that wishful thinking? Thanks for the other link. Obviously, I didn't read it before:( She is feeling much better today. Better than she has in over 3 weeks. She is determined to go to school tomorrow; she has been out over three weeks.

was your son talking about video games or something on the phone maybe?

[GraceUnderPressure]

Sorry for the delay in responding - we had to re-enroll for our health insurance yesterday. It's so fun trying to figure out whether or not to pay for maximum coverage. We went minimal this past year because we've worked outside of mainstream med for the most part all these years, & why pay for what you're not using, so we ended up losing what little was left of our financial breathing space between the neurologist, PANDAS exploration & now Lyme (& my DH's unexpected hospitalization in the midst of all this). Now we're going with the max coverage at a time when my DH's paycheck was already not meeting our expenses & yet we don't know if we will need it. Which would actually be a good thing, I know, but ugh, I wish I had a crystal ball!

 

Anyway, sorry for the rant, I hope your daughter has continued to improve! Yes, my son was talking about his video game (& he has inherited his father's deep, carrying voice). He was so uptight about getting the ivig - I can't remember the last time I saw him so agitated. So I was joking around with him & trying to get his mind onto something else & ended up having him teach me how to play his videogame - which he enjoyed & I developed a headache from.

 

My ds said he feels better for the ivig, his brain feels clearer, but his tics seem a little worse. He told me the tics that are more like routines he follows such as when he is sitting down at the table are a little less bad while the unpredictable ones that are triggered by a sound or something are a little worse. But that is actually where he was ~6 mos ago (only much, much worse) so I am thinking this may be Dr. K's "flipping back the pages". It makes me very grateful that we were able to gain some improvement with abx before we did the ivig! How is your dd responding?

[Bio and adopt]

My sons breath had a funny smell when he was younger and PANDAS was acting up. I always felt it was yeast overgrowth in his gut causing the smell. Never knew for sure.