Six weeks post-IVIG

[pixiesdaddy]

Because I know how much I appreciated other people who posted details post-PEX or post-IVIG, I want to keep documenting Pixie's progress.

 

We had IVIG on 9/11, so this is six weeks now.

 

Pixie had her first day returning to school for more than three hours - she went for five hours today, including recess, which we'd been holding her out of for fear of her being physically aggressive.

 

We've been without a caregiver for four days now, and Pixie has gotten to school EVERY day and stayed the entire time. She has not had a violent outburst in that time.

 

She has been somewhat weepy and prone to whine, but these seem more like typical 9-year-old tantrums rather than rage storms. Her ability to focus on work has improved and she's slowly participating more and more at school.

 

Six weeks out, her bed wetting and big muscle movements are completely gone. Her separation anxiety persists, but has decreased, and seems less driven by physical symptoms than habit.

 

She is still running daily fevers and we've had her seeing a chiropractor familiar with PANDAS. He did bloodwork which showed the following:

 

-Dehydration (enough for him to request she see a cardiologist)

-White blood cell counts which - in his words - suggested a virus pattern (meaning she has a persistent virus)

-Anemia

-Crazy high cholesterol

 

He has put her on a supplement and vitamin regimen (Pixiesmommy knows what it all is) to help her fight off the virus that is lingering in her system. 30 days from now we'll test her again and see where she's at.

 

He said that the blood work was indicative of an underlying autoimmune disorder, maybe PANDAS, maybe something alongside PANDAS.

 

One of our next steps is an immunologist.

 

So, at six weeks, we're still thinking we made the right choice in having IVIG. Things aren't perfect, and when Pixie does get violent it's a scary thing, but we're still optimistic and hopeful that we're moving in the right direction.

 

Pixiesdaddy

[KeithandElizabeth]

Hi Pixies's dad:

 

Thanks for the update. I think it is so helpful to get the updates and I am so happy that Pixie is doing better. It is interesting to note that Quinn's blood work also showed that he was anemic and was fighting 2 viruses. He also showed a low level of vitamin D, which is related to so many autoimmune issues. We are on prophylactic antibiotics, but they do not help with the viruses.

 

I love getting your tidbits from your chiropractic appointments. I think that chiropractors look at the whole body and I might just follow suit with either a chiropractor or DAN doctor. Good idea!!!

 

Elizabeth

[sf_mom]

Fantastic News and so happy for you!!!!!!!! Going back to school must be a huge success. Remind me what antibiotic and strength for her size Pixie is currently taking.... thanks.

 

Our son continues to do well also at 4 weeks 1/2 weeks post IVIG. Currently, it feels like he is 98% recovered with no TICs and even forgetting 'like a normal 5 year old' to wash his hands after he's gone to the bathroom!

[FallingApart]

That is so wonderful! I was wondering how you were going to fare at the 4 week mark. It seems that it is going well and I am thrilled for you! I hope she continues to improve!

[thereishope]

Glad to hear things are going well! It's hard when you see little things that make you stop, stare and think "is this PANDAS? Is this just my child?". You really have to get to know your child all over again. To learn what their natural quirks are, what their temperment naturally is. That's when I am happy I have an older son to "compare" my PANDAS son to. I'm actually happy (well maybe happy isn't the word) when my 8 yr old doesn't something questionable or has a tantrum. It shows me that it's ok if my PANDAS son has a moment or 2. It doesn't always mean he's sick. It reinforces that sometimes kids will be kids....even if they are a PANDAS kid.

 

 

She has been somewhat weepy and prone to whine, but these seem more like typical 9-year-old tantrums rather than rage storms.

 

 

Pixiesdaddy