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~Update...some good news and some still waiting for answers


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Just wanted to share an update....

 

Going forward with trying ti get the IVIG.....so far so good and sounds like United Healthcare will cover it so keeping my fingers crossed and praying! Hoping to be able to get it done in our State, but if we can't then I have a back up lining up to roll in and take over and get things done!

 

Seeing immunologist to push it forward locally, AND met an amazing pediatric allergist who after hearing our ds9 history of PANS(since 7 1/2) pulled me aside and told me he knows people and would make sure he got the IVIG he needed if we keep hitting rod blocks locally. He also requested records labs et all. So grateful to finally see a reg ped(even though he is an allergist) who doesn't look at you like you are crazy and just a bored mom looking for some drama! Hello~ our children are suffering and we will do whatever it takes to get them healed and get them back....BY ANY MEANS NECESSARY! So that was a "happy" moment!

 

For the first time in 1 1/2 years my ds is going to bed and sleeping by himself! 3 nights in a row now....hoping it lasts! Another huge "happy" moment for us all!

 

On a more serious note: just got another round of labs back and of course no one bothered explaining or discussing what they mean with me....

Blood levels are HIGH for Lymphs and absolute Lymphs and Vit D is HIGH......????

Will be calling the Pandas specialist we see to find out what the heck this is about? In the meantime, anyone have any ideas?

I did read that the high lymphs can be associated with autoimmune issues and chronic inflammation! Uhm...ya you think....PANDAS! Sorry for my sarcasm just feeling very frustrated with certain Dr right now.

 

Positive note: This song below is my strength! Thought I would share it even though it brings me to tears it is so reassuring to me and maybe will be to someone else!

 

"I Lift My Hands" Chris Tomlin

 

Be still, there is a healer

His love is deeper than the sea

His mercy, it is unfailing

His arms are a fortress for the weak

 

Let faith arise

 

I lift my hands to believe again

You are my refuge, You are my strength

As I pour out my heart, these things I remember

You are faithful, God, forever

 

Be still, there is a river

That flows from Calvary's tree

A fountain for the thirsty

Pure grace that washes over me.............

 

 

 

 

 

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My daughter has had high absolute lymphs since this started. Almost every single blood test for 3 1/2 years has shown it. It has to be a piece of the puzzle.

 

Sounds like you have some good doctors on your team. That is awesome!!! :) And so glad he is making progress on his sleep. It really helps.

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My son has also had high lymphs throughout all of this. On my notes it says "systemic toxicity" as the cause. My son is still detoxing, detoxing, detoxing...

 

So good to hear your son is sleeping by himself. We were doing well in that area until this recent flair.

 

Thanks for the song. :)

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