Looking for a diagnosis for dd

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Forum -> Children's Health

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amother

Lavender

Mon, Jun 01 2020, 10:46 pm

Maybe do a full genetic testing

amother

Bronze

Tue, Jun 02 2020, 12:35 am

A friend of mine had some of these symptoms. She had an endoscopy and was diagnosed with EOE and celiac. Bh shes feeling much better

amother

Seafoam

Tue, Jun 02 2020, 1:33 am

Sounds like a kid I know...he ended up having Crohns, has she seen a GI? An ID Specialist?

Also, my sister was seeking for a diagnosis for years, Refuah Helpline was very instrumental in leading her to her diagnosis BH (845) 782-2000

Refuah Shleima

WitchKitty

Tue, Jun 02 2020, 2:30 am

In other words, you need to take her to a rheumatologist, neurologist, and infectious disease doctor. That should cover most of the bigger tests.
Then please update us!

1091

Tue, Jun 02 2020, 3:45 am

Can’t say enough good things about karen Onel at hss. Rheumatologist.

PinkFridge

Tue, Jun 02 2020, 8:22 am

amother [ Burlywood ] wrote:

is the skin issue psoriasis bc then you can look at psoriatic arthritis (doesn't quite sound like it but maybe the aching jaw is)

Either way see a Rheumatologist bc the bloodwork can also be for lupus

Re the thyroid have you done a complete panel as recommended on stopthethyroidmadness.com and looked at the ranges NOT the lab suggested ranges. She can be getting away with an undiagnosed hypo or hyper thyroid issue

I was thinking of saying check the bloodwork to make sure she had more than TSH done. But I think a good rheumatologist, which is definitely the next step, will check that.

cbg

Tue, Jun 02 2020, 9:50 am

Have you done heavy metal testing

Ora in town

Wed, Jun 03 2020, 2:02 pm

Could be Covid (it also attacks gastro-intestinal system and skin and eyes)
Check for helicobacter pylori...

amother

Wed, Jun 03 2020, 2:22 pm

Ora in town wrote:

Could be Covid (it also attacks gastro-intestinal system and skin and eyes)
Check for helicobacter pylori...

Well, she had coronavirus before pesach...

amother

Natural

Wed, Jun 03 2020, 2:27 pm

amother [ OP ] wrote:

Well, she had coronavirus before pesach...

is this new stuff since?

amother

Wed, Jun 03 2020, 2:55 pm

amother [ Natural ] wrote:

is this new stuff since?

amother

Ginger

Wed, Jun 03 2020, 3:58 pm

If you're going to test for genetic diseases try JScreen over Dor Yeshurin. They test for more diseases and they offer counseling if needed.

amother

Natural

Wed, Jun 03 2020, 5:04 pm

amother [ Ginger ] wrote:

If you're going to test for genetic diseases try JScreen over Dor Yeshurin. They test for more diseases and they offer counseling if needed.

why would she need any of those panels? This isn’t necessarily an ashkenazi recessive thing. She can just go to a geneticist and do whatever panels they recommend, or whole exome

amother

Wed, Jun 03 2020, 5:42 pm

amother [ Ginger ] wrote:

If you're going to test for genetic diseases try JScreen over Dor Yeshurin. They test for more diseases and they offer counseling if needed.

What is jscreen?
I googled quickly and it looks like they test with a saliva sample? Do they look at blood work too?

amother

Wed, Jun 03 2020, 5:46 pm

amother [ Natural ] wrote:

why would she need any of those panels? This isn’t necessarily an ashkenazi recessive thing. She can just go to a geneticist and do whatever panels they recommend, or whole exome

When DD was a toddler we had seen a geneticist about a concern we had. I remember that extensive blood work was done at the time including a test that costs $1,000. I don’t remember if it was only a test regarding one issue or if that test would have shown other genetic diseases as well. I think I will call the geneticist.

amother

Rose

Wed, Jun 03 2020, 6:13 pm

OP I hope you find answers. I've having many similar issues with no answers for almost 6 years already.
Rheumatologist said cfs doesn't exist; neurologist laughed when I asked for a dx; functional medicine; lyme specialists all cannot help; chaim
medical & echo couldn't help me.

Scans are clear, bloodwork shows abnormalities but nothing anyone can put together.

I know how debilitating it is.
Hugs & refuah shelaima to your dd.

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