17 months post IVIG

[amy s]

HI all-

 

I thought I would jump on here and give you an update regarding my dd. She is almost a year and a half post IVIG. She is doing great, in my opinion. She is completely functional and her usual sweet funny and smart wonderful self. She is not perfect, and yes we have had a few minor bumps--- she has needed an increase in antibiotics 2x since IVIG. She takes Augmentin still prophylactically and will continue to take it for as long as I can convince docs to give it to her.

 

Briefly her story: She had extremely severe life altering and classic sudden onset OCD along with all the rest of the pandas symptoms. This went on for 9 months before we could get her on antibiotics (PCN did not help her) and a total of 15 months before we could get her IVIG. It was severe enough that she could not attend school, we had police involvement (due to RAGES in public), our lives completely turned upside down and the whole family living in paralyzed fear of a 6 year old. She was classic exorcist. I even had a nurse ask me if I had considered that she was satanically possessed.

 

Every part of her was affected. Her brain, joint pain, bowels and bladder, she walked like hashimoto, her entire upper body shook constantly including her head, severe debilitating OCD (the absolute worst symptom) and she had a weird hand licking tic, severe skin picking and severe rages lasting up to 4-5 hours long.

 

She had mycoplasma, strept A and B, bartonella, EBV, HSV I, Cocsackie virus and a bunch of other stuff. She went on zithromax and augmentin for a time (a month with no change) and then she did two steroid bursts in a row immediately prior to IVIG. I have given periodic updates so you can go back and do a search as to how she responded, but we saw continued improvement for the whole year. Within a month we saw huge improvements and she was back in school 2 months post IVIg--might have been able to go back much sooner, but it was winter break.

 

I often read on here about how everyone wishes that the older ones would come on and give updates. I have said it many times but we were truly suffering and had to try to live life again. I do check on here but to respond over and over to the same type of posts is heartbreaking and brings us straight back. And the other thing that I want to mention is that I don't really feel like there are very many with symptoms like my child's. I don't always want to answer questions like, how soon did you see symptoms go away after IVIG' or a question like that..... because my answer will be different. My child's symptoms were so severe --- of course it was extremely noticable when the symtpoms started going away. So a lot of times I don't answer because my answers don't seem to fit some of the questions.

 

I think about all your children constantly and hope you all have the good outcome like my dd has. Much love to all!

Regards,

amy s

[kimballot]

Amy - Thanks for checking in and posting. So happy to hear of your success! It gives me strength to continue moving forward!

[sf_mom]

THANK YOU! Congratulations on your daughter's continued good health.

[bgbarnes]

HI all-

 

I thought I would jump on here and give you an update regarding my dd. She is almost a year and a half post IVIG. She is doing great, in my opinion. She is completely functional and her usual sweet funny and smart wonderful self. She is not perfect, and yes we have had a few minor bumps--- she has needed an increase in antibiotics 2x since IVIG. She takes Augmentin still prophylactically and will continue to take it for as long as I can convince docs to give it to her.

 

Briefly her story: She had extremely severe life altering and classic sudden onset OCD along with all the rest of the pandas symptoms. This went on for 9 months before we could get her on antibiotics (PCN did not help her) and a total of 15 months before we could get her IVIG. It was severe enough that she could not attend school, we had police involvement (due to RAGES in public), our lives completely turned upside down and the whole family living in paralyzed fear of a 6 year old. She was classic exorcist. I even had a nurse ask me if I had considered that she was satanically possessed.

 

Every part of her was affected. Her brain, joint pain, bowels and bladder, she walked like hashimoto, her entire upper body shook constantly including her head, severe debilitating OCD (the absolute worst symptom) and she had a weird hand licking tic, severe skin picking and severe rages lasting up to 4-5 hours long.

 

She had mycoplasma, strept A and B, bartonella, EBV, HSV I, Cocsackie virus and a bunch of other stuff. She went on zithromax and augmentin for a time (a month with no change) and then she did two steroid bursts in a row immediately prior to IVIG. I have given periodic updates so you can go back and do a search as to how she responded, but we saw continued improvement for the whole year. Within a month we saw huge improvements and she was back in school 2 months post IVIg--might have been able to go back much sooner, but it was winter break.

 

I often read on here about how everyone wishes that the older ones would come on and give updates. I have said it many times but we were truly suffering and had to try to live life again. I do check on here but to respond over and over to the same type of posts is heartbreaking and brings us straight back. And the other thing that I want to mention is that I don't really feel like there are very many with symptoms like my child's. I don't always want to answer questions like, how soon did you see symptoms go away after IVIG' or a question like that..... because my answer will be different. My child's symptoms were so severe --- of course it was extremely noticable when the symtpoms started going away. So a lot of times I don't answer because my answers don't seem to fit some of the questions.

 

I think about all your children constantly and hope you all have the good outcome like my dd has. Much love to all!

Regards,

amy s

As a newbie ( 13 days ago my Pediatrician said the word PANDAS to me) THANK YOU for posting. I understand everyone's story is different but you delivered exactly what I needed today!! I hope your DD continues having great progress and it helps the rest of us know that there are success stories. I actually try and search for a positive update or success story daily, especially because I am just beginning my PANDAS journey. My child has classic exorcist behaviors and those public rages are- ummmm something any of us would love to never have to revisit again- EVER. So I understand why you may not post that often- but once again THANKS for the update- you lifted my spirits just a little to remind me that it can and WILL get better.

Brandy

Brandy

[thereishope]

Thank you for posting an update. Good hear things are going well. I wish her and your whole family continued health and happiness.

[momaine]

Thank you for sharing your story. It gives me hope.

Angela

[Doug]

Hello,

We are 8 weeks post ivig and my 5 1/2 year old daughter is doing good also

we hold our breath every day.. and I think we will do that forever.

Did you go to Dr.k?

we went to him and he is a wonderfull man

My daughter has started girl scouts and also kickboxing

and I pray that she will be able to start school again and stay there

and grow up to do great things in her life..

Tracie&Doug

[T_Mom]

Amy--Thank you!!! Wonderful to hear these stories...

and Doug!! Yey!

 

I wonder if we should start a thread at "the top" under helpful threads that includes our voluntary stories for newbies to read, and for those of us in the thick of it to be encouraged by--"good outcomes--what made a difference" ?!?

 

Good news to hear--thank you.

[mom md]

Thanks for posting. My son is 4 months post-IVIG and doing great. We are still taking it one day at a time but I beginning to relax. Hearing your story helps.

[coco]

Tmom - I was thinking about that exact thing, too. I think Alex posted a few days ago about how success stories last as long as they remain on the front page of the forum, and often newer folks don't have a chance to see them once the topics move down. I think it's an excellent idea to have a permanent "pinning" for us all to refer to when we need some hope and encouragement. I only pray that we have our own success story to "pin" for others some day!!

[Suzan]

I am so glad that things are going so well. My heart goes out to you for all you have experienced with your sweet daughter.

 

Susan

[Joan Pandas Mom]

Thanks for this post. My heart goes out for you and your family as for all the families on this forum. This is such a horrific disease. I am so grateful word is getting out as well has help for these kids. Good luck with your continued success.

[amy s]

Just a quick update:

 

My dd is age 8 now, and 19 months post IVIg.... She is doing awesome! I am amazed every day. Last week she had her first dental appointment (cleaning & xrays) in a couple of years. With my prompting, her pediatrican put her on full strength Augmentin for 10 days (and then back to her preventive dose of 250mg Augmentin daily). Things are going fine.

 

She takes swim lessons 2x week, is doing fine in summer care, and got her ears peirced! (she had been asking about getting her ears peirced since December, but we wanted to wait until she was on full strength abs to do it...dental appointment was the perfect time).

 

(as you may know there were months she was homebound, I was unable to work, police, and social work were involved and she was referred for inpatient psych hospitalization, not to mention- she was a completely different person)

 

Now:

I tell her that this is the 'Summer of _________" (her name). This is the absolute healthiest I have ever seen her, in her entire life. Now we are beginning to look back and see that the 'sudden onset' (which was horrific) on August 12, 2007....might not have been the actual onset.

 

We are so happy that she does not have any cavities, as we have not taken her to the dentist in years. We just couldn't. Going to the doctor (and tests) was all we could do.

 

I saw a recent post about heart involvement. Her last visit to the ped for exam was in November. There was no heart murmur heard then. However, she had a heart murmur 2 years prior to 'sudden onset' (with clear Echo) and she also had huge changes in her EKG during her 'sudden onset'. However, she was given an immediate Echo after that and they did not find any significant changes. On her next vist, we will definately re-examine this concern.

 

I always am thinking about all our pandas children and family. It is a difficult time but I wanted to give hope that someday things can be a little normal!

[P_Mom]

Great news, Amy! Does your daughter ever show any symptoms at all....however minor?

[P_Mom]

Great news, Amy! Does your daughter ever show any symptoms at all....however minor?