Jump to content
ACN Latitudes Forums

7 weeks post IVIG status


Recommended Posts

I just wanted to give some hope to those out there who are waiting for or planning on IVIG. My 8 year old daughter was a very easy diagnosis: Oct 6th, 2008 woke up with eye-rolling and head turning, I freaked out and rushed her to the pediatrician who (thank God) tested her for Strep because she had heard just a bit about PANDAS. She tested Positive and we had it but did not know how to treat it.

 

After many Dr's and no treatment offered we finally found The PANDAS Network in July 2010 and she gave me direction (I am eternally grateful.) We rushed for IVIG before school and got it Aug 4-5th w/Dr. K who agreed she was a classic PANDAS case. So now this is where we are:

 

ADD: Some good days and some bad. The fact that we have good days at all is amazing.

OCD: She's gone from wiping 10 times each bathroom visit to about 3..still room for immprovement.

Bed-wetting: In her entire life she has had about 3 dry nights, after IVIG she's had about 13 in these 6 weeks!

Anxiety: Much better, comes up occasionally now but 5 out of 7 days we're good.

Eye rolling Tic: Not really much improvement at all, some days I notice it's less but there are more bad days then good ones.

Mood swings: when she's tired it's a train wreck, but otherwise it's better

Math skills: Incredible improvement, she's making B's (here you need a 94% to get an 'A')

Separation Anxiety: So much better and she's not clinging anymore

 

Basically week 1 was no change, weeks 2 & 3 I got my hopes up, saw great results, week 4 & 5 were horrible, I was very discouraged since I thought she was getting better then everything went down-hill, and now in week 6 things are looking up.

 

I'm worried about when all those good antibodies go away..how she's going to do on her own. It's nerve-wracking but I'm hopeful.

Link to post
Share on other sites

Kristy,

 

Sounds like there is so much to celebrate! I'm sure you know the ups and downs are normal at this point...hang in there!

 

I wanted to ask you a question...you stated the date of your child's sudden onset; 10/6/08....would you say that was a date when all heck broke loose? It sounds like you had seen some symptoms prior to that if your dd8 has only had 3 dry nights her entire life and post IVIG that has improved, yes?

 

Just wanted to know if you are able to identify "concerns" prior to her being 6, but 10/6/08 is when it went from windy to a tornado?

 

My prays her positive outcomes continue to roll in!

 

Jill

Link to post
Share on other sites

I just wanted to give some hope to those out there who are waiting for or planning on IVIG. My 8 year old daughter was a very easy diagnosis: Oct 6th, 2008 woke up with eye-rolling and head turning, I freaked out and rushed her to the pediatrician who (thank God) tested her for Strep because she had heard just a bit about PANDAS. She tested Positive and we had it but did not know how to treat it.

 

After many Dr's and no treatment offered we finally found The PANDAS Network in July 2010 and she gave me direction (I am eternally grateful.) We rushed for IVIG before school and got it Aug 4-5th w/Dr. K who agreed she was a classic PANDAS case. So now this is where we are:

 

ADD: Some good days and some bad. The fact that we have good days at all is amazing.

OCD: She's gone from wiping 10 times each bathroom visit to about 3..still room for immprovement.

Bed-wetting: In her entire life she has had about 3 dry nights, after IVIG she's had about 13 in these 6 weeks!

Anxiety: Much better, comes up occasionally now but 5 out of 7 days we're good.

Eye rolling Tic: Not really much improvement at all, some days I notice it's less but there are more bad days then good ones.

Mood swings: when she's tired it's a train wreck, but otherwise it's better

Math skills: Incredible improvement, she's making B's (here you need a 94% to get an 'A')

Separation Anxiety: So much better and she's not clinging anymore

 

Basically week 1 was no change, weeks 2 & 3 I got my hopes up, saw great results, week 4 & 5 were horrible, I was very discouraged since I thought she was getting better then everything went down-hill, and now in week 6 things are looking up.

 

I'm worried about when all those good antibodies go away..how she's going to do on her own. It's nerve-wracking but I'm hopeful.

 

Thank you for the info..please continue to update.

Best to your DD!!!

Link to post
Share on other sites

thanks so much for sharing, it is great news. dd9 is 4 weeks post ivig and i am getting anxiety with the waiting. her rages are gone, but still has lots of other stuff. you gave me hope again, it is still possible will see more improvement too!

thank you and good luck

Link to post
Share on other sites

Kristy,

 

Sounds like there is so much to celebrate! I'm sure you know the ups and downs are normal at this point...hang in there!

 

I wanted to ask you a question...you stated the date of your child's sudden onset; 10/6/08....would you say that was a date when all heck broke loose? It sounds like you had seen some symptoms prior to that if your dd8 has only had 3 dry nights her entire life and post IVIG that has improved, yes?

 

Just wanted to know if you are able to identify "concerns" prior to her being 6, but 10/6/08 is when it went from windy to a tornado?

 

My prays her positive outcomes continue to roll in!

 

Jill

 

Well before that I just thought she was a moody, determined child. When she was born she didn't have a good time nursing and was starving for a few days (for which I feel eternally guilty) and she cried non-stop. I really thought she was eating. We got that settled, she had a milk allergy, then peanuts tree nuts, then cats, dogs & horses. But she was always really sensitive, I had to change her diaper about 16 times a day. She never took long naps and has always been high maintenance. She wet the bed forever...it is hereditary and I wet the bed till I was 10 so I figured it was normal. But now I'm just not sure, since IVIG she's even woke up at night to pee.

 

Maybe worth mentioning is that I really believe I had PANDAS as a child as well. I also had/still have since never received treatment the eye rolling tic (or chorea if that is what it is) occasionally. But 10/6/08 she woke up and we were shocked. Most of her symptoms occurred after that point. It's really hard to tell but I'm grateful for the strep test on that date that directed me in this direction since it's definitely what she has. Wish I could know for sure..

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...