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norcalmom

7 weeks post ivig - cough

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Hi all,

 

Has any one that has been thru ivig had a "blip" due to a virus? DS doing pretty good after IVIG almost 7 weeks ago. Until yesterday - he has come down with a minor cough (sister has sniffles). A child that we car pool with to school stayed home today - sick (haven't found out what that kids has yet, but she didn't have any cough or sniffles the day before). AGGGGH.

 

Last night - he had a tantrum, triggered by OCD (which til this pint was slowly better!). Today after school, he told me he was "pandas-y" all day long. This was unprompted, I just said "how was school?" like I always do. He actually told me he couldn't pay attention, he had a few head tics, and he is in a horrible mood. He said this is what he felt like all last year. He's been doing so well..we've been seeing small progress every few days..not to say he didn't turn back some pages - but it was definatly different, and for the past 2 weeks - almost no mood issues at all.

 

The cough is minor. No fever. He DID sleep last night, and didn't wet his bed (something that pre-ivig would be first sign of exacerbation). But, I also gave him a melatonin to make sure he would sleep bcs I knew he was fighting a cold!

 

So, what do I do? He's on 500mg/day azith. We've been doing fish oil, ester C, vit D...and I gave him some oscillococcinum - and I'm wondering about THAT too - does that stimulate your immune response so you don't get as sick...in which case maybe our kids shouldn't take it?

 

I'm going to give him some ibuprophin, but don't think he can take a steroid because he's sick. I guess I should try to get doc to give a scrip for steroid burst in case his cold goes away and his pandas stays?

 

DS never had mycoplasma blood test - does anyone know if a ped can order that? Would it even be valid 7 weeks post ivig?

 

Maybe kids with pitands - are ones that need more than one ivig? Should I be planning another so that they aren't so far apart, or wait and watch?

 

I don't even really need these questions answered. I need to scream! And I need to hear from folks that went thru ivig and had a child react to a virus (not strep)..did you eventually slide backwards to where you were pre ivig, or was it a blip?

 

I can't protect him from simple colds!

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I think it was a blip.

 

My son has been having IVIGs regularly-- every two months-- he has had 4. He does react to viruses and then recovers.

 

Last week for example he fell and hit his mouth, and wound up with a mouth full of nasty canker sores (viral, right?) (and why all the canker sores?) and while those were raging he was a wreck-- my inner alarm bells were ringing-- eyes were all bleary. Now the cankers are healed and he has regained his equilibrium and clear eyes. To me this says... I have no real scientific basis for believing this... that his immune system is still haywire, though I am hoping it is less so than before.

 

I have my concerns about all the IVIGs (constantly stirring things up?) but Dr B certainly believes the kids need more than one.

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hi Bronxmom-

Thanks for the reply. How is your son after 4 ivigs? I think the last update you made was several months ago (after ivig 2?) and he was hand clenching, ALOT. Has that resolved? Do you see symptoms come back at a certain point after each ivig (4 weeks, 6 weeks) or are periods of wellness getting longer?

 

I hope things are well w/you.

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NOCALMOM- we had the same thing 7 weeks post IVIG this summer. No stress at all,just a "mystery illness". Once the illness passed (7-10 days), so did the PANDAS stuff. But in the following weeks is when we started to see the panic attacks in response to stressful situations. If you read my post from earlier this week, we had a serious downturn with the combo of 2 illness back to back and the stress of starting highschool. He is getting back on his feet within a matter of days (and some xanax...)My husband and I have remarked that we can't recall seeing him go down so far so fast and then rebounding back again so quickly. Almost like the sawtooth from He**. Is that a function of the IVIG he had? Or the xanax? Or this latest illness disapating? We don't know...Not sure if we ever will.... My point being not to panic (ha ha - like someone could have told me THAT a few days ago) but watch and see.

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that doesn't sound good - sounds like his baseline started to creep up. Is he 100%, or 90% and climbing?

 

The whole resaon we did ivig was bcs after every ilness, ds's baseline would creep (he'd retain a symptom, or a symptom tht he had during good times would get worse) so his overall trend was getting worse and worse. I hope you are going the other way! I'm going to go read your old posts - thank you for sharing your experience. I am calmer today. Keeping him out of school.

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wornoutmom - just reread your post (oh, that was you guys!) Sorry - I have hard time retaining the screen names and associating to their kids story. I was on that thread - sounded exactly like my panic last night! It's funny bcs, I offered u our cam K kit, and almost the next day my son starts in...and I'm like, darn. I shouldn't be so confident, things can be great one day, and the next all h$%^ breaks loose.

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Hi. Well, I would say he is doing OK.

 

I THINK that after each IVIG there is a period of decline and/or craziness and then a baseline that is a little higher than before the IVIG... a period of relative calm and then at about the 7 week point a wearing off of the benefits...maybe. But I tell you I have moments of doubting the whole thing... It seems so subtle. Is it all in my head? Is he better than he was a year ago? Would he have gotten better anyway?

 

 

What am I doing? why do I so persist in looking for a medical solution to a psychological problem?

 

Yet each time there is a weird new behavior that comes and then fades. This suggests something is happening. After #3 I had the hand clenching, which lasted for over 2 months (through IVIG #4) but is now gone. After #4 there was the most alarming thing I'd ever seen-- he was soiling himself every day for exactly 10 days after IVIG, then when I thought I was really going to lose it, it suddenly stopped.

 

After #4 I thought... I should not do this to him any more... now the scheduled IVIG #5 is approaching (mid Oct.) and I just can't decide. I've gone insurance coverage for it in place, so why not try to lick this thing while I have the chance? I just don't know.

 

And through it all these frustrating cognitive problems, total lack of organization, and a pathological messiness (his 2 yo brother is more organized).

 

I would say based on what you are describing you should do another IVIG but... are you paying out of pocket?

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I'm so sorry you are having a slip back. No, you can't keep him from exposure to colds--PANDAS is so frustrating and complicated. In our 6 years of dealing with this I am only now starting to "get it". Any exposure to anything is sending my son into an exacerbation. I am really struggling on what to do about this. I think we have to keep calm and just go with the flow (easier said than done!). It is and is going to be the nature of the beast. PANDAS truly is a beast. It sounds like you are doing all the right things with abx, vitamins and supplements. I hope it passes soon. Good luck.

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bronxmom-

yes...i did pay out of pocket ,just got back the denied insurance claim I am trying to fight.

 

I don't think you are looking for a solution to a phychological problem...I FIRMLY beleive it is a medical problem. The fact that he is having these strange physical reactions (like clenching ans soiling - controled in Basal Ganglia) just confirms it.

 

Sounds like you never wait long enough to see the benefit. I'm assuming it is High Dosage - 1.5? so are u scheuled for 5 total?

 

I am thinking ds might be one of the ones that might need another, and/or I need to get mycoplasma and lyme testing. did you have those done before hand? I think you are Dr B's patient? I wish we were closer to him - he sounds the most thorough.

 

My DS wet his bed every night for 3? weeks after ivig. Its so weird. He wet last night - first time in 4 weeks - probably due to this cough. I'm conflicted on how to feel about it though - I now feel like the wetting is sign that there is a change coming (good or bad) because when he was wetting every nite post ivig, he was definately improving in mood and tics. BUT it was also his first sign of heading into exacerbation pre-IVIG..usually a couple days before it would start, and during exacerbation - he might do it, but not every nite. I kept him home from school yesterday - he seemed pretty good, not as bad as day before (for pandas stuff anyway). We'll see what the weekend brings.

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