This month is TWO YEARS POST IVIG

[amy s]

Hi folks,

 

I just wanted to post an update about my dd as this month marks a big anniversary for her. November 17 and 18, 2008 she had IVIG and she has done remarkably well. Many of you were here when I was posting on here more frequently but I still check the boards almost daily and think about your children ALL THE TIME.

 

I do not feel that my dd is 'cured'. I am still in fear that any moment bizarre behaviors will come back. But we have been lucky that so far she has only needed the one high dose IVIG (over two days). There have been a few times that I have increased her antibiotics to full strength for various reasons (slight variation in behaviors), especially within that first year after IVIG, and I still keep steroids in my refrigerator but have not had to give any.

 

Briefly her story:

 

August 12, 2007 she developed the sudden overnight onset OCD that was unrelenting, she was about to turn 6. Rages (I mean RAAAAGGGGGEEEESSSSS - you guys know the type)- began a few weeks after that. She was a very sick child and her OCD and behaviors basically turned our family's life upside down...but I know you guys all know what I'm talking about. She had the classic separation anxiety and urinary issues....she started lining up her toys and no longer 'playing'...

 

her OCD was the most devastating though, as she would constantly tell on herself for things she thought she did or said or whatever. I mean like 50 to 100 times in every 5 minute period of time she would say things like, "Mom, my head says that I'm going to kill you" and "Mom, I just said a bad word" (she never did say the bad words) (plus many other bizarre statements- but those were her usuals). She started picking at her skin, at times with 20-30 open wounds on her body. Of course our family went through the wringer with trying to find ANYONE who could help us or knew what was wrong. Her rages were so bad there were police involvement and she eventually had to be homebound. A 4 hour rage (of us literally keeping her in a bear hug to keep her safe) was not uncommon at all. She was very much exorcist type of pandas. She had tremors of the hands, arms, head and entire upper body and walked like a hunchback. Absolutely nothing like my previous child.

 

 

Our family was living in Italy at the time and she was a very bright young girl who would tour to many different countries, learning their language so she could bargain with locals at the markets and order in restaurants. She was (at least IMO) gifted at puzzles and languages. After exchanging emails with Dr. K in April (8 months later) I knew that we'd found the issue and she started on antibiotics but that didn't help and we needed to relocate back to the states. (By the way- we traced strep back to her brother having scarlet fever in June that year and she also was brought in to see ped. that same week with sore throat but swabbed negative so was not put on antibiotics-- sudden onset was 2 months later!) Things continued to be exorcist like but with the relocation and everything we just could not get IVIG until November.

 

After IVIG things started getting better right away, each day and week brought new relief to our lives and with very few turning back the pages issues (but there were some). Each month was better than the last until about the 12 month mark when things seemed to be completely leveled out and normal again.

 

Today she is an honor roll student, extremely funny, and just a normal kid again. Again, that doesn't mean that we don't all still fear strep. And we still keep her very close by (she doesn't go anywhere without us except school). Each day is a blessing, a complete gift and I hope all of you have that as well.

 

My recommendations: I already know you are doing everything you can for your child....but don't forget to take care of yourself. Eat healthy and exercise if you can for stress relief. Find time away from the house (and pandas child at times), also find time and interests besides pandas research! That is hard to do, I know. PTSD is real, at least in my case and it messed up my life for a while -- when my child was actually doing fine---that is when it hit me! Difficulty sleeping, nightmares, unrealistic fears, horrible nervousness and unable to think clearly. I could go on and on. Finally I am finding that our whole family is enjoying life again.

 

I wish you all the very best.

Regards,

Amy S

[Tamistwins]

Hi Amy,

It is awesome to hear that your daughter its doing well and that you got back to a normal family life. I pray for that day to come, Heck I pray for one normal day.

 

Best of luck I pray your daughter continues to do well.

Tami

[KeithandElizabeth]

Amy:

 

I am so thrilled for your whole family!!!

 

During our worst of times last winter, your updates gave me soooo much hope!!!

 

Thank you for sharing the fantastic news!

 

Elizabeth

[kferricks]

Thank you so much for posting this! I needed to read something like this today. You give us hope.

[peglem]

Congratulations! You have an inspirational story...thanks for including the need for the whole family to heal.

[thereishope]

I'm happy to hear all is well! After recovery, life becomes a balancing act. You try so hard to live normal again, but you know you have to remain on guard about illness, symptoms,and the worrying rarely stops. May you and your family have continued health. Thank you for the update!

[EAMom]

Thanks for the update Amy! I'm glad your dd is doing great!

[Phasmid]

Great success story! Thanks for posting!

[Fixit]

Thank you!!!Thank you!!!!!

[philamom]

It's wonderful to hear your whole family is enjoying life again!! Thanks for posting!

[sf_mom]

Thanks for sharing and congratulations on keeping her well!!!!!!

[momcap]

Thank you! We desperately need to hear the success stories!

[momofgirls]

Amy

That was a great post! Thanks so much for continuing to share your updates. It brings us all a little relief to hear the good stories again and again and again!!! So happy your daughter is well. Take a deep breath once and enjoy her.

Kim

[Mary M]

Thank you for posting. Two years...and health continues. That is so reassuring. Your message to the parents is so important yet so hard to make real. Thank you for allowing us to learn from you and have hope through you. May your precious child continue to be well.

Mary

from Michigan

[NVAmom]

Thank you for taking he time to post this. It seems lately our steps are only backwards. Can I ask if your dtr remembers 'the bad times'? My ds seems to 'wipe' them from his mind.

I am so happy to hear your family is doing well!