"I'll talk to him and see what he's come up with over the weekend :) "
-
lisa ann peterson
- Female
- Okanogan, WA
- United States
- Blog Posts (47)
- Discussions (18)
- Events
- Photos (34)
- Photo Albums (2)
- Videos (1)
lisa ann peterson's Discussions
ssi
6 Replies
Started this discussion. Last reply by KaTrina Slaughter Sep 17, 2009.
lisa ann peterson's Page
Latest Activity
lisa ann peterson left a comment for Cheryl Biermann"I don't think he's worried bout insurance I think it's more me. We did have her vaccinated for meningitis and it didn't take to one form of meningitis. Also he's mostly concerned about when the point to stop Solaris is.. He…"
Svetlana Finley left a comment for lisa ann peterson"Lisa, i contacted Alexion and got Anna registered with them, got all info, talk to my doctor and she told me they already contacted her about Soliris. That is how we started, my doctor was worry about insurance u can talk to Alexion and they will…"
Cheryl Biermann left a comment for lisa ann peterson"Arrrgh! Why isn't he talking to the docs on this site? You get immunized for menegitis, and check the titers every so often! Please, you mean to tell me he said you have to find out about the insurance? That…"
lisa ann peterson commented on Dana M Simone's blog post Jack update"Praying for jack and your family"
lisa ann peterson commented on Diane schaller's blog post Stomach aches"My daughter Chloe has had stomach aches since day one and they even make her puke. She has been taking Zantac for four years and we are just now trying to wean her off of that med. hope this helps."
lisa ann peterson left a comment for lisa ann peterson"Well lil miss had her doctors visit today. We discussed Solaris and we discussed Chloe's future. I talked with dr. H about Chloe being on all the high doses of meds and what its doing to her body. I told him I think I would like to use Solaris…"
lisa ann peterson commented on Cheryl Biermann's blog post cahterization leads to better numbers"nice to hear that nathan is up and moving.. i will be praying that nathan gt stronger each and every day..."
lisa ann peterson commented on Bill Biermann's blog post Cheryl and Nathan's big day"sooooooooo awsome i am so glad to hear your great news.. god bless your family"
lisa ann peterson commented on Dana M Simone's blog post Vision Problems"chloe has vision problems and headaches. she wears glasses and sometimes her vision goes blurry.. the neurologist is investigating why this is all happening. the kidney doc says that her norvask(amlodapine) can cause headaches so we are doing more…"
lisa ann peterson commented on Bill Biermann's blog post Linda Burke is honored as one of Maine's Volunteer of the Year finalist"congrats linda"
lisa ann peterson commented on Phyllis Ann Talbot's blog post What a morning!"i think that truly our kiddos love to keep us very busy.. i will be praying that you will not have to walk a tightrope and things will get better fast.. and that his wonderful kidney will stay safe and healthy.. lots of prayers your guys way"
Kerri Grey commented on lisa ann peterson's blog post lil miss chloe"Wow Lisa,
How horrible for you all to have to go through!!! (((Hugs)))"
lisa ann peterson posted a blog postlil miss chloe
well lil miss chloe had an ultra sound and we will know the results of that tommarow. also her labs are getting closer and closer to meeting all the criteria of the study. her hemoglobin is 10 her hematocrit is 29 her creatnin is .50 and her bun 22 and her ldh is 300 and also her platlets are 250. she also is wearing the 24 hour blood pressure monitor.. so we will send that back tommarow. on the 21st she will have the next MRI and she will also get labs again to monitor her. I am nervous and…See More
lisa ann peterson's Photos
Comment Wall (37 comments)
- At 11:17pm on May 26, 2012, Svetlana Finley said…
Lisa, i contacted Alexion and got Anna registered with them, got all info, talk to my doctor and she told me they already contacted her about Soliris. That is how we started, my doctor was worry about insurance u can talk to Alexion and they will give you information and they will also contact your incurance about covarege. If your doc. just want to lower Cloe meds and just see what happens i dont think that is right way to go. I will suggest to contact Alexion they will assign you a case worker and they will help you. i totally agree with Cheryl.
- At 10:17pm on May 26, 2012, Cheryl Biermann said…
Arrrgh! Why isn't he talking to the docs on this site? You get immunized for menegitis, and check the titers every so often! Please, you mean to tell me he said you have to find out about the insurance? That doesn't make sense at all, the hospital should be doing this, our entire team of doctors/transplant nurses and social worker were involved trying to get it for Nathan! He needs to call Alexion and talk to the docs on the doc to doc registry! Your social worker needs to be involved and so does the doctor.
- At 9:50am on May 26, 2012, lisa ann peterson said…
- Well lil miss had her doctors visit today. We discussed Solaris and we discussed Chloe's future. I talked with dr. H about Chloe being on all the high doses of meds and what its doing to her body. I told him I think I would like to use Solaris and he informs me the study is now closed they are not accepting patients. I felt like I was punched in the gut. We discussed Chloe being on so many pills and he said well she looks good now I told him its easy for you to look at the now but I am her mom and I need to look at the big picture what these meds and this disease is slowly doing to her body. We are going to see what her body can handle and we are going to start weaning her off some blood pressure meds and stomach meds in hopes that she maintains without them. She can't be on these meds forever without it causing damage to her other organs. He also said if we decide to try and get the insurance to approve the medication that we are subjecting her to being susceptible to meningitis. So He said he will do some more research but as of now there are no answers for her and I tell u what as a parent that is overwhelming and frustrating and it makes me sad. But really I am greatful that I have Chloe and that she looks good. We don't have results to her labs and won't have those till Tuesday so I'll update when I find out labs. I just wish that this darn disease had a cure and that we had a long term plan for Chloe..
- At 9:52am on March 7, 2011, lisa ann peterson said…
- Lil miss has another headache today poor Lil miss I feel so bad for her
- At 11:21pm on February 18, 2011, lisa ann peterson said…
- Chloe has been getting very bad headaches so they are going to do an MRI next week unless they get worse then we will get one this weekend.. She is getting bout 1 an hour not sure if it has to do with her fall on valentines and the fact that she has fractured her neck a couple years back
- At 9:41pm on February 7, 2011,
Grace said…
- I'm sorry you and Miss Chloe have been having a rough winter. My thoughts & prayers are with you.
- At 6:08pm on January 22, 2011,
Riley Brewer said… - Hi Lisa, thanks for the comment. I'd never heard of aHUS before last Saturday. Dr. Hernandez has been fantastic and we're learning fast. We are at Sacred Heart waiting for the surgeon to finish inserting a catheter for dialysis. It's a bummer, but we're in good hands here.
- At 8:30am on December 17, 2010, Cheryl Biermann said…
Oh, no, Lisa, I just saw the comment about Chloe being in the ICU from following Linda's comment. Are things looking any better? Saying a prayer for her.
- At 10:29pm on December 16, 2010,
Linda Burke said… Hi Lisa,
How's Chloe doing tonight? So sorry to hear that you've had to put on your 'tuff hat' yet again after she's been admitted to ICU...hope they're not seeing that her respiratory issues are provoking aHUS activity. Saying prayers for Chloe and you all.
- At 10:12am on November 6, 2010,
Joy Lewis O'Brien said… - Lisa, I'm glad to hear that Chloe's hearing seems to have improved! Ear pain in kids can be so horrible--it makes them so tired and cranky. I'm glad her doctors have found something to make her feel better! Keep us posted!
Profile Information
- Birthday
- October 8
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
lisa ann peterson's Videos
Lisa ann peterson's Blog
lil miss chloe
well lil miss chloe had an ultra sound and we will know the results of that tommarow. also her labs are getting closer and closer to meeting all the criteria of the study. her hemoglobin is 10 her hematocrit is 29 her creatnin is .50 and her bun 22 and her ldh is 300 and also her platlets are 250. she also is wearing the 24 hour blood pressure monitor.. so we will send that back tommarow. on the 21st she will have the next MRI and she will also get labs again to monitor her. I am nervous and… Continue
Posted on April 7, 2011 at 12:53am — 1 Comment
lil miss chloe
i woke up this morning thinking about how on the 28th of march chloe has been dealing with this disease for three years. it doesnt feel like its been that long. well lil miss has been staying strong, i find it amazing that we take away epogin in feb and she is maintaining her blood levels they are low but they have been lower. i have to believe that god has a plan and that I am just supposed to wait. chloe on wed will have some…
ContinuePosted on April 1, 2011 at 9:18am — 1 Comment
Chloe
Well lil miss went to the doctor today and the neuro doc said that we are going to keep a diary of her headaches and doc Hernandez is going to change blood pressure meds to see if her headaches get better. She is also getting another MRI to check her lower spine to see if that's what's causing her incontinence there is also alot of other tests they are going to run to see if they can figure out why she is having those migraines and they also don't think it's the Chari one malformation. Also she… Continue
Posted on March 22, 2011 at 12:17am — 4 Comments
Lil miss Chloe P
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… Continue
Posted on March 3, 2011 at 9:14am — 10 Comments
Chloes day
Well let's start with some good news... Chloes heart is still strong thank god.. Now with labs which are still good well hemoglobin was 10 hematocrit is 30 and platelets were 250 and creatinine is .48 and bun 28 ldh is 215 so no solaris yet.. We will remain off epo and wait another month before labs unless she starts to get sick she qualifies except for her ldh and platelets so like I said we wait. I felt like a nervous wreck thinking of how tired she has been and how tired she will get..I pray… Continue
Posted on February 17, 2011 at 9:54pm — 2 Comments
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
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.
• • • • • • • • • • • •
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.
more factoids...
• • • • • • • • • • • •
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.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by
