Victorious

[LNN]

LLM, what blog? Is there a success blog I should know about?

 

It's a blog site called Easy to Love But Hard to Raise (http://www.easytolovebut.com/ that MomWithOCDSon turned me on to and I occasionally blog for. The mom who writes about her OCD son - Barbara Claypole White - is wicked funny. JAG helped me with my most recent post, so this was sort of an inside joke - trying to get her write a story of her own. She's encouraged me at some really low times when my son's brain fog seemed "permanent" and has celebrated with me privately as he's emerged from the haze. But I don't have the before/after amazing test scores to tell this sort of story. So nudge, nudge...

[minimaxwell]

Thanks so much for sharing,truly inspirational. After spending 4 hours today at Mass. General Hospital Boston discussing how to get lVlG for PANDAS kids this is exactly what I needed to hear. My DD17 is 9 weeks post lVlG with Dr. K and already wants to schedule another one. She was 70% improved but about a week ago she felt like she regressed slightly. I know this is a waxing and waning healing--my question to you smart PANDAS Moms is 'how long do you wait between lVlG's?? We want to get her to at least 90%.

[T_Mom]

Thanks so much for sharing,truly inspirational. After spending 4 hours today at Mass. General Hospital Boston discussing how to get lVlG for PANDAS kids this is exactly what I needed to hear. My DD17 is 9 weeks post lVlG with Dr. K and already wants to schedule another one. She was 70% improved but about a week ago she felt like she regressed slightly. I know this is a waxing and waning healing--my question to you smart PANDAS Moms is 'how long do you wait between lVlG's?? We want to get her to at least 90%.

 

 

I am guessing that due to your daughter's age and symptoms Dr K is advising another one -- since she is 70% right now.

Our daughter (at 12) had IVIG last year, it has been a year of healing...however, she was about 90% within a few weeks initially.

I am only speculating, but the age is of greater concern, I think. I think you will know--and honestly, if it was me, I would probably go ahead and schedule it, so it is possible if/when you decide.

[minimaxwell]

No we have not spoken to Dr. K about this. I do not want to go back to Chicago and prefer to have it done locally if possible. My daughter is the one that is requesting it! we are lucky we have UnitedhealthCare which covers lVlG for PANDAS.

Thanks so much for sharing,truly inspirational. After spending 4 hours today at Mass. General Hospital Boston discussing how to get lVlG for PANDAS kids this is exactly what I needed to hear. My DD17 is 9 weeks post lVlG with Dr. K and already wants to schedule another one. She was 70% improved but about a week ago she felt like she regressed slightly. I know this is a waxing and waning healing--my question to you smart PANDAS Moms is 'how long do you wait between lVlG's?? We want to get her to at least 90%.

 

 

I am guessing that due to your daughter's age and symptoms Dr K is advising another one -- since she is 70% right now.

Our daughter (at 12) had IVIG last year, it has been a year of healing...however, she was about 90% within a few weeks initially.

I am only speculating, but the age is of greater concern, I think. I think you will know--and honestly, if it was me, I would probably go ahead and schedule it, so it is possible if/when you decide.

[JAG10]

We are all so fortunate to have each other. I've met some amazing, brilliant, generous people on this board. And I know right now there are parents out there poking around and looking for that post that matches their kid's craziness. Come on board and embrace your own OCD!!! My girl wouldn't be well without this community, bottom line.

Since she doesn't have a sudden onset date, we are using the dates before Memorial Day weekend, the dates of her first IVIG as her PANDA-VERSARY (who came up with that one? Genius!!!).

Thank you for all the high fives and tears of sisterhood. I can say without any doubt I've never worked harder at anything else in my entire life than getting this girl well. I just shake my head when people who don't really know what this is all about, like some relatives, say "oh you'll forget all about this one day". Uh...no, this is different. This journey is not a rebellious phase; it leaves a mark of humility on you soul for surely we have all learned that certainty should be questioned.

Thank you all for the victory lap.

[AmySLP]

"My girl wouldn't be well without this community, bottom line"

 

Isn't this the truth! I credit this community for healing my daughter as well and giving me the knowledge and support to do the same with my youngest. Thank you to everyone who has contributed to my childrens diagnosis and healing!

 

Amy

[Alex]

Jill,

 

So incredibly happy to read your post! A great reminder to us all that this disorder isn't a life sentience for our children. By not giving up and continuing to fight for your daughter, you have given her a great gift, the chance to lead the life she was meant to have. In doing so, I'm sure you have paved the way for many others as well. I still check in on the forum often and always appreciate your informed and compassionate posts, although this one is certainly my favorite. Kudos to you, and your daughter! Alex

[mar]

Okay I feel like crying again. You are the best mom and your girl sounds like the brightest girl in the world. I am so happy for you both! Moms like you give strength to others!

Mar

[cobbiemommy]

As I read your story, I thought about all of the similarities between our kids; their ages, their downward sprial, the plane rides. You are showing me the rainbow after the storm. Thank you so much for inspiring me and others to keep going. Your daughter is blessed to have you and you are blessed to have her!

 

Now where are those tissues!!!

 

Cobbie

[JAG10]

Hey Alex!

We really miss your input around here. Perhaps we need to start a reunion post to get some old friends to provide updates???

Thank you and everyone for your kind words. I know this isn't over, but I just don't think she will ever be as bad as she was. And her little sister is hitting that prime pandas age, so on we march. Unfortunately, dd8 isn't bouncing back from illness as easily as she was before. Deep breath. None of this is a life sentence. Keep one important thing in mind...your child's best day is their baseline. There are endless reasons why kids are worse than what they are capable of, but they are never better than what they are capable of....so their best day is their goal.

Blessings and thanks to you and all those serving in the military and reserves. We honor those who died for their country as well as those who spend time away from their families so that we can enjoy ours under a blanket of freedom and security.

Jill

 

 

[Fixit]

We are all so fortunate to have each other. I've met some amazing, brilliant, generous people on this board. And I know right now there are parents out there poking around and looking for that post that matches their kid's craziness. Come on board and embrace your own OCD!!! My girl wouldn't be well without this community, bottom line.

Since she doesn't have a sudden onset date, we are using the dates before Memorial Day weekend, the dates of her first IVIG as her PANDA-VERSARY (who came up with that one? Genius!!!).

Thank you for all the high fives and tears of sisterhood. I can say without any doubt I've never worked harder at anything else in my entire life than getting this girl well. I just shake my head when people who don't really know what this is all about, like some relatives, say "oh you'll forget all about this one day". Uh...no, this is different. This journey is not a rebellious phase; it leaves a mark of humility on you soul for surely we have all learned that certainty should be questioned.

Thank you all for the victory lap.

 

Amen Sista!!!!

 

 

"Mom, it's okay. It's my story. I was supposed to get sick and I was supposed to get better to make me the person that I am. And I was supposed to have you as my mom."

 

JoB Well done!!!

I like who your dd is!

And i can feel her personality and it mimics alot of these kids. It will make them the more compassionate citizens of this planet.

 

Thank you for Sharing.