Does anyone regret doing IVIG?

[Stephanie2]

Well, being a regular parent would be a dream! My first son started with pandas at 18 months, and so did my second son. Also, my second son had early signs of autism (which are now gone, except for the speech delay). So I have no idea what it is like to be a normal parent and I am going through a real time of anger. I am angry at anyone who crosses my path (especially the mom groups at the park who look at me when my son starts doing something crazy and pandas-like!). I am so filled with jealousy and I can't even imagine what it is like to just go to T-ball, karate, ballet and school functions and not go to a doctor's office every single week! Any activity I have tried to get my child involved in has always backfired (too emotional, too scared, to unfocused, you name it. and then school plays? forget it, the kid stands on the stage and cries his eyes out!). That really does look like a fairy-tale life to me! Ok, enough of the pity party...back to reality!

 

I have also seen/heard the high-pitched scream! I hate it! We had IVIG done 8 days ago (for my oldest, ds5) and I am sitting here trying to remember if he was doing that pre-IVIG. I think that he was. Maybe it is an allergy thing, who the heck knows. Then again, I am wondering if it is due to yeast from the constant antibiotics.

 

I will report back after 6 weeks and let you know if I regret IVIG. I will tell you this, I already regret that I only did 1 mg/kg and if we repeat it will definitely be 1.5 mg/kg.

 

As far as DS2, I am on the fence regarding IVIG. He has some mild motor tics and minor irritability but I often wonder, who the heck gets the chance to catch it this early!? Maybe I should drop a bomb on his pandas now before it gets out of hand (which by the way, it IS out of hand when not on antibiotics. he is currently on low-dose azith). But insurance does not cover either of my boys and we only have so much money to throw at IVIG. I mean should I save it for my 5 year old who is debillitated by this? Hard to say (then again, not so expensive for my 2 year old who is still less than 30 lbs!). So much to consider, sometimes I get so tired of the research and constant decisions!! Would give anything for a week in Hawaii alone with my husband with a drink in my hand and my toes in the sand!!!!!!!!!!

 

Stephanie

[dcmom]

Fixit- Both daughters eventually became fairly debilitated by pandas.

 

DD age 6 was first, last March. Overnight she woke with excessive wiping after toileting. The next four weeks snowballed, until she couldn't dress, couldn't go to school, barely ate, couldn't sleep, and spent hours in the bathroom. We got her back with antibiotics, an then it was up and down for almost 6 mos. When we proceded to pex, she was in decent shape already. Immediately post pex, ALL symptoms totally subsided (even some schoolwork issues and cognitive inflexibility that we hadn't really attributed to pandas). She got the flu the following month, had a flare in symptoms that was controlled with steroids, and is now doing well. We haven't gotten back to that total resolution in symptoms, yet. She is a canary for strep, when exposed I see a marked increase in issues. She is mainly left with some sensory issues with clothing, and a dislike around using the potty. Thankfully, she is happy, and these issues do not have an impact on the way she lives her life. This summer we are planning erp with the clothing stuff.

 

DD, age 9, had a milder onset last March as well. We didn't catch it: stomach aches, anxiety, oppositional behavoir and ocd (which she hid). She remained functional until she also had the flu this fall. After that she started to spiral down with ocd. We did a steroid burst in December- it was amazing- she was the sweet happy confident kid we hadn't seen in almost a year. Post steroid burst, she got a cold, and went off a cliff. Out of school, major ocd, not eating, sleeping with me, major anxiety all around, anger, major depression, manic behavior, aggressive anger, etc. By the time we got her to the doctor- she felt we needed pex immediately. She had pex the first week of March. She is about 5 weeks post pex. She was in way worse shape than her sister at time of procedure. She has not had the total resolution of symptoms at all, however a major improvement. She is back to school, and able to enjoy things. She still has lots of the ocd stuff- but not quite to the extreme. I am really hoping things resolve for her soon. She is in therapy. We see her Dr this week.

 

PEX was a miracle for both of my girls. It gave them their life back, and their ability to take control over the ocd (while some of the ocd just went away completely on its own). I know it may be temporary, we will do it again if needed. We hope to "manage" pandas with antibiotics and steroid bursts. I do wonder if IVIG would cure them- I am not convinced, yet.

[NancyD]

My biggest regret is waiting so long to do IVIg. Our doctor wanted us to do it when he first diagnosed my dd14 seven years ago but I could not get insurance coverage back then. If I knew then what I know now how much IVIg would help my daughter I would have paid out of pocket for it in a heartbeat. What a difference in the quality of life!

 

Nancy

[kimballot]

My biggest regret is waiting so long to do IVIg. Our doctor wanted us to do it when he first diagnosed my dd14 seven years ago but I could not get insurance coverage back then. If I knew then what I know now how much IVIg would help my daughter I would have paid out of pocket for it in a heartbeat. What a difference in the quality of life!

 

Nancy

 

Nancy - How long ago did you do IVIG, and did you just do one round?

[NancyD]

kimballot,

 

We have been doing monthly infusions for more than 1 1/2 years. We are still doing them but we increased dosage to 1.5g/kg in March and we plan to take a 3-month break to let the antibodies settle and see what happens. I'm hoping we can do them much less frequently.

 

Nancy

[EAMom]

Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

For a short period of time (just a few days) my PANDAS dd complained that "her taste buds didn't work" and "food didn't taste right." This was shortly after IVIG (1 or 2 weeks if I recall). I did contact Diana P. (since I didn't know for sure if this was a PANDAS symptom or something else), and she said this was a symptom her son had....I suppose it falls into the relm of sensory issues....anyway, that was the only "new behavior" we had post IVIG and it didn't last long.

[EAMom]

After our son's 1st round of IVIG, we saw significant improvement - probably 70% better overall within 1-2 months. But we did also see a brand-new symptom: his 1st vocal tic, which grew progressively worse from a seal-like bark to a high-pitched screech. The new symptom surprised us. Didn't seem like "turning back the pages."

 

 

Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

 

Do you recall any incidents of "activiation" of never before seen behaviors?

 

Thanks,

Jill

 

Worried Dad's situation is a tricky one... since his son later had such an improvement (after more IVIG) on high dose Augmentin. So, I wonder if a low grade strep infection and then (we later learned) WD's own infection (high titers) really complicated matters? In other words, if strep had been totally eradicated from the household, would the screaching tics have appeared?

[kimballot]

kimballot,

 

We have been doing monthly infusions for more than 1 1/2 years. We are still doing them but we increased dosage to 1.5g/kg in March and we plan to take a 3-month break to let the antibodies settle and see what happens. I'm hoping we can do them much less frequently.

 

Nancy

 

Thanks so much! That brings up lots more questions, but I am going to post a new topic so I don't hijack this one!

[Worried_Dad]

Great question, EAMom! Have asked myself that many times. Unfortunately, I'll never know the answer for certain, but it definitely muddies the waters.

 

 

After our son's 1st round of IVIG, we saw significant improvement - probably 70% better overall within 1-2 months. But we did also see a brand-new symptom: his 1st vocal tic, which grew progressively worse from a seal-like bark to a high-pitched screech. The new symptom surprised us. Didn't seem like "turning back the pages."

 

 

Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

 

Do you recall any incidents of "activiation" of never before seen behaviors?

 

Thanks,

Jill

 

Worried Dad's situation is a tricky one... since his son later had such an improvement (after more IVIG) on high dose Augmentin. So, I wonder if a low grade strep infection and then (we later learned) WD's own infection (high titers) really complicated matters? In other words, if strep had been totally eradicated from the household, would the screaching tics have appeared?

[JAG10]

Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

For a short period of time (just a few days) my PANDAS dd complained that "her taste buds didn't work" and "food didn't taste right." This was shortly after IVIG (1 or 2 weeks if I recall). I did contact Diana P. (since I didn't know for sure if this was a PANDAS symptom or something else), and she said this was a symptom her son had....I suppose it falls into the relm of sensory issues....anyway, that was the only "new behavior" we had post IVIG and it didn't last long.

 

 

 

That's interesting. I notice "food doesn't taste right" when I take ibuprofen.