What medically is going on with DS1

[hillview]

Thank you all. He is feeling a lot better. We see the hematologist and rheumatoid docs this week looking for more info on a diagnosis. So far all the scary tests they have run that we have back have been good news (no lupus, etc).

[JustMe]

Thank you all. He is feeling a lot better. We see the hematologist and rheumatoid docs this week looking for more info on a diagnosis. So far all the scary tests they have run that we have back have been good news (no lupus, etc).

So glad to hear the scary tests are negative! I hope he continues to feel better and you get some helpful answers this week!

[erosenst]

Thanks for the update. Glad to hear it!


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[NCGrandma]

Good update! Hope you’re close to a diagnosis, and it will be something manageable.


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[bisous]

Thank you for updating. You've both been in my thoughts and prayers. I'm glad the negatives have been ruled out. It sounds like you're getting there. I hope he continues to feel better and you get the answers you need!

[zukeypur]

So glad to hear all of the tests were negative! Hopefully he is feeling better than they have some other ideas as to what is going on.

[3isEnough]

Just catching up on this thread. I’m so sorry to hear that your DS is going through all of this but am glad to hear he’s starting to feel better. I hope they can soon provide a definitive diagnosis.

[essnce629]

I'm so glad all the most concerning tests were negative and that he's starting to feel better. Fingers crossed you get a definitive diagnosis soon.

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[California]

hillview, how is your son doing? Hope that he's continuing to feel better and is having a good start to summer.

[hillview]

Aww thanks cali - he is doing better! Still on a lot of prednisone which is being tapered so some side effects from all that but overall 100x better!