What is wrong with us!!!

[kimandkathess]

OP I will be praying for your family. I am glad you shared your story with us for two reasons.
1. Prayers can be said to help your family
2. Your story can remind us that our lives are usually not as bad as someone else.

Sometimes I get really bummed about certain things and I have no where near the amount of stuff to worry about as you.

You must be very strong on the inside to be able to handle all of this. Perhaps in the future there is something bigger that you will have to be prepared for and this is only something to prepare you.

I will continue and continue to pray for your family. I hope you get some relief soon, even if it's just for a short time. I am sure anything would help.

(((Hugs))) God Bless

[Jen1]

You are in my thoughts and hope things get better for you and your family

[kymberly21]

You story reads like Erin Brockovich could have written it. I'd sidestep the doctors for awhile and look into environmental factors. Are other people in your town also sick with "rare" diseases? Have you had your water tested? Is it city water or from a well? Lots of agriculture nearby? Superfund site? Do you live near the Cargill meatpacking plant? Electrical lines overhead? Government facility nearby?

Something in your environment...water, soil, air is causing a calcium leach from your bones. Drinking lots of soda (phosphoric acid) also causes weak bones but not to the extent of your surgical list. If I couldn't solve this systemic poisoning, I'd move as far away as possible.

As an antidote, bentonite clay is great for removing poisons from the body including heavy metal toxicity. It is safe for internal use but more commonly used in a bath. HTH

Blessings to you and your family and I hope you find out what is killing you. I'm not a doctor but "genetic" is also code for "clueless".

We live in Kansas City Ks. We bought a house in a Historical District just under 3 years ago. And before that we moved to a different rental every few years.

We are 10 miles from anything Agricultral wise and there is nothing Developed near us , because we bought a house thats only 10 years from the historical registry.

Also the broken bones have all been the results of pretty bad traumas. None of them left the Doctors scratching their heads atleast.

[kymberly21]

You Ladies have all been so sweet. I typed all that out late one night when, I was getting depressed with everything that has happened.

I know a good deal of it was Clumsyness. My Ankle was , and so was my hand lol. But the Car Accident that broke my Shoulder was followed by another accident a year later, that caused a Meniscus tear in my knee. Both were the other Drivers Fault. In both incidences I had just bought a new to me Vehicle. One I had had for 7 days and 1 I had had for 1 month! I planned on buying a Crossover this year, but am putting it off because Im 100% sure I will have another drive crash into me!

With my Back. It was not a Disease but a Weird Injury , that developed a even rarer complication. Something I found out a a month after my surgery though is that my Father also had Cauda Equina Syndrome 2 years before I did. Its extremely rare so to have it show up in a Father and Daughter , well its weird. It also usually hits people in their 40-60's not 29 year olds.

My Daughter Rosy , I almost miscarried her. I think that has to do with a lot of it.

Another weird thing.

My Cousins son has Kowasaki's Disease
My Brother has a rare disease that causes Benign tumors to grow through out his body. He has over 2000 tumors.
My Grandfather Died from a Rare heart defect
My Oldest Sister has the same Defect.

A lot of Dynamics in our family.I dont think any of us should have bred. Lol

[kymberly21]

It looks like we are going to have a Diagnosis of Eosinophilic Esophagitis on our 5 year old Rosy.

Its considered Rare. What a Surprise.
Apparently her Esophagaus is severely allergic to Certain Types of Food. It means not just a Diet Change but a whole life style change for her and Eliminating all milk, egg, wheat, soy, peanuts/treenuts, and seafood from her Diet and ours!!! Because breathing Nut Dust could be enough to set her off.

If eliminating that stuff fails, then they move to Formula for the child. Regardless of age. Because the kids cant drink enough to keep weight on a Gtube is usually needed to keep the child thriving.

Someone please just shoot me. I can not handle this. I can not handle my child being sick from another thing. This Diagnosis wont even cover whats causing the pain in her Hip, Legs and Buttocks. So there is still something wrong.

[meggers]

Awww, kymberly.

I truly believe God chose you as a mother for these children & I believe He will give you the strength you need to get through all of it.

You said you're in KCK. Are you going to KU or Children's Mercy?

[kymberly21]

Childrens Mercy. We have a team of a Internalist , A General Surgeon and a GastroInteroligist along with out PCP and nursing support.

Im off to the store to go try and find something I can feed this child safely. Im thanking god, I literally cut every coupon from the inserts and file them as Im probably gonna need them. Have you seen some of the prices of the Health foods????

[CW&M Mom]

I have a lot of online friends whose children have that dx..and I belong to a forum that has an EE forum (also a tube feeding forum). If you would like the link, let me know and I'll send it to you.

The formula is horribly expensive and nasty tasting...so I pray that your able to do the food changes and it is enough.

HUGS!!!

[meggers]

Childrens Mercy. We have a team of a Internalist , A General Surgeon and a GastroInteroligist along with out PCP and nursing support.

Im off to the store to go try and find something I can feed this child safely. Im thanking god, I literally cut every coupon from the inserts and file them as Im probably gonna need them. Have you seen some of the prices of the Health foods????

Yeah, I know. Health foods are insanely priced, but you might be able to make a lot of things.

You might wanna check out our sister site organicgrocerydeals.com

I'm not sure organic is enough, and I've never looked around much there, but I'm sure they have a lot about health foods & may be able to offer advice that you wouldn't get anywhere here. *Hugs*