Caryn Hamilton's Page
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Cheryl Biermann left a comment for Caryn Hamilton"Yeah, Soliris! Caryn, it could be that because of Paul's yougn age, the blood pressure issues might get better with the Soliris, our doctors told us once we shut off Nathan's kidneys, it was possible, but because of the severity of the…"
Cheryl Biermann left a comment for Caryn Hamilton"Oh, I'm so happy Paul is doing better because of the cpap. We are now cleaning up feedings because he is ripping out his feeding tube at night also! Paul is so funny!
Give him a hug for us!"
Caryn Hamilton left a comment for Caryn Hamilton"The challenge of getting Paul to wear his CPAP mask is daunting. Neither one of us is getting much sleep as I have to keep checking if he has pulled it off throughout the night and force him to put it back on - which is happening about 4 - 6 times…"
Cheryl Biermann left a comment for Caryn Hamilton"Caryn, I've been wondering how Paul is doing, is the CPAP making a difference? With Nathan, it's hit and miss, but I think it has improved his health a little over all. After all, just think what that little brain could do with enough…"
Linda Burke left a comment for Caryn Hamilton"Hi Caryn,
Saying a little prayer for a sweetly slumbering Paul, the cpap mask snugly giving him a restful night's sleep! Wishing you the best, Linda"
Caryn Hamilton replied to Christy's discussion Prayers"Requesting prayers for Paul and all of us as we try to convince him to wear a cpap mask. We finally got him a sleep study and the results are severe sleep apnea. The bright side of this is that addressing this problem should help his ability to…"
lisa ann peterson left a comment for Caryn Hamilton"my lil chloe got a port a cath and they put in a 9.6 french which is big for lil miss since she only weighs 38lbs the pheresis nurses said that if she needed pheresis again they could put in an iv to push the plasma and they could use her port a…"
Cheryl Biermann left a comment for Caryn Hamilton"Caryn, Thanks for the information on Paul's respitory stuff, Nathan also had his tonisils out at five along with his adenoids. Too many strep throat occurances causing Ahus attacks. I'll talk to the doc about the other treatments,…"
Caryn Hamilton replied to Christy's discussion Prayers"The following is the prayer I pray everyday (at least once) and it has helped me through many tough times and always brings me peace. Lord, I don't know or understand your plan for Paul, but I have faith that you do. Please give me the strength…"
Caryn Hamilton left a comment for Linda Burke"Paul got his regular flu shot as soon as it became available - August 25th. The assumption is that he will get the H1M1 as soon as it is available. I haven't heard anything different from Seattle."
Caryn Hamilton replied to Linda Burke's discussion Soliris"My son, Paul Hamilton was diagnosed with aHUS in January 2005. He turned 6 this past July. He does not have any of the known genetic mutations that cause aHUS. Paul began receiving 600 mg of Soliris every other week at Children's Hospital in…"
Profile Information
- 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:
- Tested but Results are Inconclusive
My son, Paul, was diagnosed with atypical HUS in January 2005 at Children's Hospital in Seattle. He turned 6 in July 2009. He has tested negative for the 5 known genetic mutations. Two kidney biopsies have only revealed that he has aHUS, no clues as to why. Paul has a younger sister (age 4) who does not show any signs of having aHUS.
We have traveled to Seattle for plasmapherises as needed to control the HUS. Sometimes that is twice per week, although we had a really good run of monthy treatment for almost two years (more often when ill). Beginning in April 2009, he began requiring weekly treatment and it wasn't improving his numbers, just holding them steady. He began Soliris infusions in June. So far, the Soliris is keeping his numbers steady without plasmaphersis. No change in his high blood pressure or chronic proteinuria. Doctors were not sure how he would respond because he doesn't have any of the genetic mutations. One other interesting note - the Soliris has corrected something intangible within Paul. He has more energy and is very happy. Like he was before being chronically sick wore him down. Labs aren't showing anything different, but it is a noticable difference.
Paul's ongoing issues, now that the HUS relapses seem under control with the Soliris, are chronic hypertension and proteinuria. He has been hovering just below our BP theshold of 120/80 for over a year now with the help of Amlodipine, Lasix, Minoxidil, and Cozaar. We had better control in prior years, but this issue has become more serious as time goes on. His proteinuria has affected his thyroid hormone, so he now takes Levothyroxine for that. He also receives iron monthly and Aranesp (a form of epo) every other week through his central line. As our primary doctor once said, he appears very healthy, but looks are deceiving. It takes a lot of medication and monitoring to keep him going.
Paul's Hickman line was replaced with a port in October 2009. He is afraid to get wet after so many years of not being able to, but I hope by next summer that will resolve itself.
So, that is our journey down the path of life with aHUS - so far. Everyday brings new challenges and worries, but good things too.
We have traveled to Seattle for plasmapherises as needed to control the HUS. Sometimes that is twice per week, although we had a really good run of monthy treatment for almost two years (more often when ill). Beginning in April 2009, he began requiring weekly treatment and it wasn't improving his numbers, just holding them steady. He began Soliris infusions in June. So far, the Soliris is keeping his numbers steady without plasmaphersis. No change in his high blood pressure or chronic proteinuria. Doctors were not sure how he would respond because he doesn't have any of the genetic mutations. One other interesting note - the Soliris has corrected something intangible within Paul. He has more energy and is very happy. Like he was before being chronically sick wore him down. Labs aren't showing anything different, but it is a noticable difference.
Paul's ongoing issues, now that the HUS relapses seem under control with the Soliris, are chronic hypertension and proteinuria. He has been hovering just below our BP theshold of 120/80 for over a year now with the help of Amlodipine, Lasix, Minoxidil, and Cozaar. We had better control in prior years, but this issue has become more serious as time goes on. His proteinuria has affected his thyroid hormone, so he now takes Levothyroxine for that. He also receives iron monthly and Aranesp (a form of epo) every other week through his central line. As our primary doctor once said, he appears very healthy, but looks are deceiving. It takes a lot of medication and monitoring to keep him going.
Paul's Hickman line was replaced with a port in October 2009. He is afraid to get wet after so many years of not being able to, but I hope by next summer that will resolve itself.
So, that is our journey down the path of life with aHUS - so far. Everyday brings new challenges and worries, but good things too.
Comment Wall (10 comments)
- At 10:15pm on November 14, 2009, Cheryl Biermann said…
- Yeah, Soliris! Caryn, it could be that because of Paul's yougn age, the blood pressure issues might get better with the Soliris, our doctors told us once we shut off Nathan's kidneys, it was possible, but because of the severity of the blood pressure issues and the length of time, he will probably always have some degree of high blood pressure. I'ts wonderful that he is feeling like a healthy little boy again!
- At 10:44am on November 6, 2009, Cheryl Biermann said…
- Oh, I'm so happy Paul is doing better because of the cpap. We are now cleaning up feedings because he is ripping out his feeding tube at night also! Paul is so funny!
Give him a hug for us!
- At 11:44pm on November 5, 2009, Caryn Hamilton said…
- The challenge of getting Paul to wear his CPAP mask is daunting. Neither one of us is getting much sleep as I have to keep checking if he has pulled it off throughout the night and force him to put it back on - which is happening about 4 - 6 times each night. He has gotten smart and knows if I hear the air blowing I will wake up because I know he has pulled it off - so he has begun stuffing it under his pillow! I have to laugh at the stubborness of this boy even though it is exhausting. Data shows he is only waking up 7 times each hour instead of 30, so even though he only averages 1 1/2 hours wearing it they say its worth it.
Paul got his port last week which is bittersweet for him. He is still very upset about having his hickman removed and wants it back. We ended up having to remove the hickman early because he got a line infection and was in the hospital for two weeks. Paul got his first H1M1 last week (no bad reactions) and my daughter is scheduled for it next week. No luck in getting one for me yet. Had a really hard time getting my seasonal flu shot in Tri-Cities (no serum) and ended up getting one while in Seattle at Safeway after getting Paul's port put in.
Praying for a healthy winter season for everyone.
- At 11:55pm on November 2, 2009, Cheryl Biermann said…
- Caryn, I've been wondering how Paul is doing, is the CPAP making a difference? With Nathan, it's hit and miss, but I think it has improved his health a little over all. After all, just think what that little brain could do with enough oxygen! Hope he's loving his astronaut gear.
- At 10:24pm on September 14, 2009, Linda Burke said…
- Hi Caryn,
Saying a little prayer for a sweetly slumbering Paul, the cpap mask snugly giving him a restful night's sleep! Wishing you the best, Linda
- At 12:15pm on September 12, 2009, lisa ann peterson said…
- my lil chloe got a port a cath and they put in a 9.6 french which is big for lil miss since she only weighs 38lbs the pheresis nurses said that if she needed pheresis again they could put in an iv to push the plasma and they could use her port a cath to pull cause it was big enough.. her port is the size of a 50 cent peice but it sticks out pretty far but it has been the best thing we have ever done.
- At 8:57am on September 10, 2009, Cheryl Biermann said…
- Caryn, Thanks for the information on Paul's respitory stuff, Nathan also had his tonisils out at five along with his adenoids. Too many strep throat occurances causing Ahus attacks. I'll talk to the doc about the other treatments, he's been on daily doses of Claritin because of this since he was three and then we added flonase last year. His teacher is new this year and kind of grossing out! I tell her its allergies hopefully, he does a good job of using the sanitizers ect. around her at school! One of our issues is fluid retension leading to pneumonia so he has recently begun to eat and is also gaining weight, they are always afraid of increasing dry weight in him in case it's fluid...yesterday after two weeks of horrible dialysis they increased is dry weight by a pound and he did much better as far as that goes, but this morining he's still hacking. I hope Paul doesn't have another winter like his last one, maybe Soliris will help with all that as well? Thanks again. Cheryl
- At 6:50pm on August 14, 2009, Linda Burke said…
- Thanks for the update, Caryn - it's great to hear that Paul is doing so well. I hadn't heard anything about the "happy effect" reported in adults using Soliris for PNH- it is indeed an unusual but nice twist! Skyler has always had a sunny disposition, so I'm not noticing the same here. We almost immediately replaced Skyler's central line with a subcutaneous mediport - I think we only had two or three Soliris infusions before we "switched out". We did so for two reasons: line infusion risks are fewer with a mediport and we felt the mediport provides a better quality of life in regard to swimming, etc. Our doctors felt we should lose the double lumen tessio as soon as possible, so we went with their rationale. It would be great if you could post some of Paul's Soliris info in the Soliris Forum, so that others weighing this option have your valuable input. Wishing you the best, Linda
- At 6:25pm on August 14, 2009,
Jodi Kayler said… - Welcome to the site. We live and are treated in Spokane so you are practically a neighbor! I have a 6 year old also, named Coen. He was originally diagnosed at 11 mos. We started Soliris in April. Coen, like Paul, has tested negative to all genetic mutations as well as HUS antibody tests.
You mentioned a couple interesting things: Coen also used to be a quiet kid until he got Soliris, now he is happy and has unlimited energy. Just a great surprise to the treatment! Also, Coen also gets sinus infections easily after a cold--an interesting similarity.
Coen recently had his central line removed completely in April. He is just getting a traditional IV in the arm every 2 weeks for Soliris infusions. He likes it a lot better and it has eliminated any infection risks.
Sounds like we have a lot in common. It's nice to have you on the site!
- At 8:50pm on August 5, 2009, Linda Burke said…
- Hi Caryn,
Welcome to the newly launched interactive website for The Foundation for Children with Atypical HUS. Thanks for adding Paul's story - my son Skyler went on Soliris in March and has responded well. I've put info from Skyler's labs and treatment protocols in the Soliris Forum on the Home Page of this website and would really appreciate your participation there. We just learned today that Skyler's next Soliris infusion will be cut in half - down to 300mg. Scary, but it will be important to share Skyler's data with other parents who wonder about this new drug.
It's so great that Paul feel a new sense of wonder and joy - what a great bonus! Thanks for sharing such a nice "side effect" to Soliris- lab values can't quantify it perhaps but knowing that Paul's quality of life is improved is terrific news to share.! We look forward to your participation here - Best, Linda
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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.
• • • • • • • • • • • •
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...
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