The Foundation for Children with Atypical HUS

Ok guys Iam a little raw when I explain this.. We hot Chloes MRI results back from ties and it seems that she has a borderline chiari one malformation It might explain more than we thought like peeing pants headaches leg and arm pain vision problems and vomiting at random.. I don't know much from here except that we are hopefully going to hear from the nerosurgeon today to find out what the next step is.. All I keep wondering is " really" Ian normally the woman who has a list of questions for the doc before they are even done and I had no words yesterday I did not know what to say I do not know what I feel right now besides sad and mad.. It feels like a punch in the gut.. But I tell you no matter what the condition is and why she has it we will push through this and come out strong.. I'll keep you posted

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Comment by lisa ann peterson on March 8, 2011 at 3:01pm
Miss Jodi yes we did.. They were super sweet and their little boy was so kind it is such a small world.. And destiny thanks we are praising god right now because we found out Chloe as of eight now will not need surgery and that we will see a neurologist to help with her pains and such.. Thank u for kind words and prayers
Comment by Jodi Kayler on March 8, 2011 at 2:43pm
Hey there, I heard you met our good friends while in the waiting room. It is such a small world. Sorry you guys have something new to worry about. Hang in there.
Comment by Destiny Floyd-Rakes on March 8, 2011 at 12:03pm
Hey little Miss Chole and mother. Please by all means do not feel alone we were told by are Doctor last week almost the same thing that she now will need to be followed by a neurologist for almost the same reasons headaches, muscle cramps and visions problems that still continue. So from one mother to another mother please hang in there and no that we are sending you and yours up in pray.
Comment by lisa ann peterson on March 4, 2011 at 9:55am
Thank you.. The neurologist looked at the MRI and said we defiantly need to meet with the other neurologist that she saw when she broke her neck. We are praying that it will not require surgery
Comment by Joseph J Krug MD on March 4, 2011 at 2:57am

Lisa,

Chiari One malformation is the mildest, and is usually not associated with any symptoms. Chiari One is usually found only incidentally, and is a minor variation which usually requires no treatment or intervention.  It is diagnosed more often nowadays because there are more MRI's being done for other reasons.  "Borderline Chiari One" can also mean that the radiologist is "overreading" the MRI.  Please don't get unduly upset until you talk to the neurosurgeon.  I bet he'll tell you something along the lines that this finding is not significant for Chloe at all.  Which is what I'd tell one of my patients.  Keep the faith!  You and your family are in our prayers...

jeff  

Comment by lisa ann peterson on March 3, 2011 at 4:54pm
Well Chloe will be meeting with neurosurgeon just don't know what day yet so we will know more when we meet with him.. They saidthw only way to fix the pressure is surgery
Comment by lisa ann peterson on March 3, 2011 at 2:19pm
We know nothing yet Iam just in limbo waiting and praying it was a missread
Comment by Joy Lewis O'Brien on March 3, 2011 at 1:34pm
Wow, Lisa, what a shock. You guys are in my prayers... Have they talked to you about surgical options?
Comment by Cheryl Biermann on March 3, 2011 at 12:33pm
I am so glad the mysteries are now being unravelled, Lisa.  May the prayers of everyone give you all the strength you need.
Comment by Jonathan Aguallo on March 3, 2011 at 9:34am
Lisa, we will pray for Chole and your entire family..... Stay Strong!

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
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