Looking at old pictures-so much wasted time

[cobbiemommy]

My DD is going through family albums for her senior slideshow at school. As we looked through the books, there is such a dramatic shift in my son's facial expressions from age three to age five. How anyone in the medical field could have thought that was normal is beyond me. We have spent almost ten years taming this beast known as PANDAs, although for six of those we did not know what we were dealing with. Ds, is about 85 percent at the moment due to two steroid tapers and a tonsillectomy.

 

When I think of all the time and heartache that we have spent struggling with this disorder, it boggles the mind...

[rowingmom]

You are right. It's hard to think about, but you have found the problem and are working on a solution. You will eventually give your son back his life.

 

What really makes me sad is all the children who will never have a diagnosis, who will be dismissed by doctors, who will never get help because their parents don't have the chutzpa to keep inquiring.

 

All of this takes time and heartache, but it has been a lesson to every one of us.

[junkyardjean]

We received a book from dd's daycare a few months ago that she has attended since a baby.

 

Dh looked thru it first - first comment - you can tell by her face/eyes when she was sick.

 

It was profound the difference for me - I hadn't seen the pictures of flare vs. non flare times so nicely put side by side.

 

It made me sad , but also helped me realize that we are dealing with something very physical here, and to get back my fire back burning on high. That led to the Mayo clinic self pay trip!

[cobbiemommy]

We received a book from dd's daycare a few months ago that she has attended since a baby.

 

Dh looked thru it first - first comment - you can tell by her face/eyes when she was sick.

 

It was profound the difference for me - I hadn't seen the pictures of flare vs. non flare times so nicely put side by side.

 

It made me sad , but also helped me realize that we are dealing with something very physical here, and to get back my fire back burning on high. That led to the Mayo clinic self pay trip!

Did the trip to Mayo produce any findings? I think pictures can be very helpful in documenting progress.

[qannie47]

I have often thought the same thing when I have looked at pictures of my son post Pandas.....caught on film.

[junkyardjean]

 

Did the trip to Mayo produce any findings? I think pictures can be very helpful in documenting progress.

 

 

 

I knew going in that they would be hesitant to talk PANDAS - lucky (or unlucky), her symptoms have evolved to be much more obviously physical (like cyanosis - they are ironically more comfortable with that). I was also clear that we were not looking to engage in pandas vs no pandas discussion, but to hear their expertise on immune systems.

 

We are from Canada, and needed a plan for what to do with follow up here over the long term. Her immune complement system is not normal, and it is clear from her results that during times of illness, her body is showing inflammation and organ damage. It looks like her body is trying to flip into an immune complex disease (along the lines of lupus) based on the tests.

 

While no help with the pandas, we also were not "seeking" any. To save myself disappointment, I went in with the mindset that immune dysfunction is immune dysfunction, they could call it steak and cheese - I could use the immune information across the board. Their support was definitely helpful in that way, and their expertise was very helpful.

 

I would say that the docs we saw would not have so helpful on the pandas only discussion - we heard the "we are not saying it's not real, but there is more in medicine we don't know than we do" thing, thankfully due to her other main presenting symptoms at the moment, we didn't gave to go further into it!