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Update almost 8 weeks post IVIG


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I know I have been MIA with the new job, school starting etc... but I wanted to get back and update how ds8 is doing 8 weeks tomorrow post IVIG. FANTASTIC!!!! :D :D :D A couple of weeks a go we had an episode of Cognitive inflexibility- it was once we got through it- it was middle of the range not the worst but not the easiest. Yes his eyes were dilated, it was a Friday after the first week at school- at a new school (and I held him back because he missed SOOOOO much school last year- so stress was at at it's height.)The teacher had had issues with him that day at school- wanted suggestions for how to handle(my heart sank on that one but have not heard back since!)He has made several new friends in his class- he had one main friend last year that was not a "good friend" if you know what I mean. Mainly because the kids did not think he was a "good choice" since he was disruptive in class etc. He is overall happier, overall calmer. I can't see any OCD AT ALL. My son will say it is there about 2%. If he asks for the door to be shut it is because he wants privacy b/c he is changing clothes not because doors have to be closed. I will touch one side of his head to see if he "needs" the other side rubbed and he doesn't grab my hand and rub it on the other side anymore. I have not seen the hand touching evenly since a couple weeks post IVIG. I still think he has some mild sensory issues but I can definitely say they get exacerbated by PANDAS and are really really manageable now.

 

The deep interest in reading is back- he read 4 biographies the first 2 weeks of school- in the classroom. He finished the Lightening Thief in a couple weeks. He still moans about homework but we are working on it.

Tonight at dinner he sat during most of the meal- had normal conversations with everyone was not hanging upside down or invading peoples personal space. He even looked at my husband and asked him about his hunting weekend.

I changed the rules to no TV after dinner and I did not get an argument from him- normally any change would cause a MAJOR disruption. I bought a great responsibility chart this week for both of my kids- He is asking to do chores!!!! I still have to ask him a zillion time to do things when he is interested in something else but I think that is about being an 8 year old boy more than anything else.

We are moving to a prophylactic does of Zith. We had been on 500mg ( a double dose) every day and we are moving down to 250 3 days a week. However he gave me the 250 script as if we were taking it every day in case I need to double up for something.

The school is responding wonderfully and already letting me know when strep is in the school.

We are thrilled with the results and are VERY HAPPY that we did IVIG so quickly. I know some of you are out there in the rough part of IVIG so I wanted to make sure you got a good story too!!!

Once again I would not have been able to get everything done so quickly without all of you!!!!

Brandy

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