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7 Weeks post IVIG


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I cannot believe I'm able to say this, but my daughter is 100%. Truly 100% right now and has been for the last two weeks. We even went on a cruise last week and I was scared about what might happen. She had several exposures to things that would have set her off before. nothing. Just normal 12 year old behavior. She is 100%. I so wish we would have given the IVIG and ERP intensive five years ago. I'm amazed at the difference. No OCD (it was moderate to severe). No anxiety (it was pretty severe). No tics (it was very mild). She is off of abilify and we plan to start dropping the zoloft slowly with dr b's blessing. She goes back for another ivig next week. Please God let this stay with her. I'm completely in awe of the healing. Thank God!

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Dr. B is our PANDAS dr and performed the IVIG. The IVIG changed my daughter's outlook on life within the first week. She went from being highly full of anxiety, OCD, depressed and hating life to being joyful and happy. That was the biggest difference that we saw with IVIG. I also firmly believe that should wouldn't have even attempted the ERP without first having the IVIG. Her attitude truly changed after the IVIG. The CBT/ERP was REALLY helpful with the OCD which was so entrenched in her since she had it for so long (5 years). It was an intensive 3 week daily program (the same one done in FL by Storch). It was unbelievable how much it helped. She quickly faced fears that were impossible to even mention in the house for years. She worked through nearly 30 OCD items within the 3 weeks. Dr. Keeley in Atlanta was amazing with her and I feel incredibly blessed to have her work with my DD. I'm sure we will continue to work with her here and there if things pop up again. The tools that she gave my daughter are just incredible.

 

As far as repeating the IVIG, since my DD is still on Zoloft, I'm not sure if she will be this good without it. That is our goal: med free, ocd free. For this next round (assuming Dr. B will be on board), I'd like to wean her off the zoloft and see what happens. Dr. B also said from the beginning with her that he'd like to get her to 100% and then do a couple more to ensure it.

 

So, that is where we are today! I'm still journaling and trying to keep an accurate diary of how things have progressed. I know how nervous we were about having IVIG done for our child (so much so that we put it off far too long). If anyone else is sitting on the fence and would like to talk, please send me a message. Also, finding an excellent CBT/ERP therapist was crucial for us. In my humble opinion, travel wherever you need to go, spend what you need to spend. I just wish we would have done it sooner. Losing 5 years of a childhood is terrible.

 

Prayers for all of our wonderful children!

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Hi.......we probably could be your control study!....my daughter was exactly the same as you described regarding anxiety, OCD, and tics...but her OCD was pretty severe with fears..not compulsions.....only other difference is we are only 1 1/2 years into this.....anyways...we did not do ivig, but it is still an option I often think about......we are currently into week 2 of storch's program here in Florida and are very very pleased.....I hope I will be able to say she is 100percent back to herself by the end of next week...but, even if not we sure are a lot farther than I ever dreamed compared to last year.......what I wanted you to know is that I have been weaning my daughter off of Zoloft 1.5ml since January...I was scared to do so because her anxiety was sooooo bad and all docs said to actually increase the dosage...well, when I started decreasing she actually showed improvements!,,..not huge ones...but best of all did not get worse.....I went really slow and then when school was out I went a little faster....usually on the first day I deceased she would seem to have more stomach pains...but it only lasted a day (and she always complains of stomach pains anyways)....she is only on .3ml now , off antibiotics and I am so happy.....so best of luck when you do decrease and so glad your daughter is better!!!!

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Hi.......we probably could be your control study!....my daughter was exactly the same as you described regarding anxiety, OCD, and tics...but her OCD was pretty severe with fears..not compulsions.....only other difference is we are only 1 1/2 years into this.....anyways...we did not do ivig, but it is still an option I often think about......we are currently into week 2 of storch's program here in Florida and are very very pleased.....I hope I will be able to say she is 100percent back to herself by the end of next week...but, even if not we sure are a lot farther than I ever dreamed compared to last year.......what I wanted you to know is that I have been weaning my daughter off of Zoloft 1.5ml since January...I was scared to do so because her anxiety was sooooo bad and all docs said to actually increase the dosage...well, when I started decreasing she actually showed improvements!,,..not huge ones...but best of all did not get worse.....I went really slow and then when school was out I went a little faster....usually on the first day I deceased she would seem to have more stomach pains...but it only lasted a day (and she always complains of stomach pains anyways)....she is only on .3ml now , off antibiotics and I am so happy.....so best of luck when you do decrease and so glad your daughter is better!!!!

 

Interesting! I'm so ready to start pulling the Zoloft out. Hearing your story gives me hope about doing it. We see Dr. B next week so I'm looking forward to getting his stamp of approval too. Was Dr. Storch on board with lowering the dosage? Just curious...

 

Isn't it amazing what a few weeks of therapy can do? YAY! So thankful for Dr. Storch and his program. That is where our therapist trained. Such a blessing! Hope it continues to go well.

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My plan was to try to get off the Zoloft and antibiotics before the 3 weeks here in Florida....I also really wanted to do ivig also before...but could not get brave enough to attempt scheduling it...my daughters biggest fear..and I mean it was huge..was throwing up so I know that would have put her anxiety level off the charts....but now 2weeks here in Florida has helped so much that my daughter would now accept the risk of throwing up as a good exposure to conquer so if the ivig is needed she could for sure hanle it..

Seriously, I totally know how you feel about the Zoloft..it is scary to mess with things...but it is an awesome feeling each time we lowered it and to see that she was ok....I just went really slow...also I did not tell my daughter when I lowered it until we were here in Florida.

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Well, of course this would happen. I knew it would as soon as I posted it.... Huge flare of anger, depression and OCD today. Crap. Well, good thing we have the next IVIG scheduled for next week. Hope this one helps and does the "magic bullet" trick. I'm so down right now. My dd is SO upset. Went through an hour of complete melt down. Just seems so hard to keep fighting this mess. Why won't it just go away and STAY away.... Oh, btw, she is still on abx. (Augmentin)

 

Hope everyone else is having a better day. Mine stunk. :(

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This is what I knowi need to deal with.....the ups never last , but when it is going well for a good amount of time it makes the blips even harder! I am not at the age of hormones yet, but I wonder if that plays a role,too...hang in there....the ups may never last, but they do return :)

 

Ha!..editing to add that my daughter is not at the age of hormones yet :)

Edited by michiganpandas
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