The Atypical HUS Foundation

Infants with ahus being treated with Soliris

Our daughter was diagnosed with ahus at 7 months old.  I have talked with several of you on here about the treatments your children are taking and frequency.  I was wondering if anyone else has an infant being treated with soliris and what the dosage and frequency is.   I would just like to compare notes on the treatments and results.  Thanks

 

Dustin Wiggins

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Comment by Kimberly Lancaster on December 19, 2012 at 9:17am

My son, Samuel (5 months old) was diagnosed with aHUS in November and had his first treatement with soliris on 11/27, second on 12/4, and is due for his 3rd on 12/26.  We are getting weekly lab tests and things seem to be going good. 

Comment by sabrina kiernan on December 12, 2012 at 4:07am

That great treatment being moved up 5 days this time, hopefully it will be the boost needed to stop the aHUS.  

Comment by Dustin G. Wiggins on December 11, 2012 at 8:24pm

talked to the doctor today and he has decided to move treatment up 5 days to try and boost system.  Also to prevent problems over the holidays.  Then I believe we are going back to every three weeks labs permitting.

Comment by Svetlana Finley on December 11, 2012 at 1:06am

You can ask Alexion to contact your doctor or doctor contact Alexion for dosage and not just reat paper, everyone is different and they make adjustment for everyone. I hope your doctor will adjust Soliris, also you only one can advocate for your child keep pushing them for right treatment. We will be praying for that. 

P.S. Here is the link to Christi Rudd, she has son with AHUS and first got dignosed when he was 8mo old https://www.facebook.com/christi.rudd?fref=ts

Comment by sabrina kiernan on December 10, 2012 at 6:37pm

Hi Dustin, Ryan is 12kg now, not sure what weight he was when Soliris commenced but it would have been over 10kg. When commencing on Soliris however ryan was definately given Soliris Day 1 for example and then another dose maybe 1 week after but this was when commencing.  It did shut the aHUS off.  When our children relapse does it then not make sense that the dosage may have to be altered to initially shut the aHUS off.  OF course I am not medical and we trust in our doctors and the Alexion company.  They have to follow guidelines.  Please discuss this further with your consultant also to see what they can do to help your wee one.  aHUS is an aggressive condition which affects many organs.  I pray you get some answers and dosage sorted out.  

 

Comment by Dustin G. Wiggins on December 10, 2012 at 5:42pm

We talked to alexion case nurse and she didn't think that they recommended for any weight at any more than two weeks.  But when we told our doctor this(we were pushing for another treatment this week)he got the packet that came with the medicine and informed us that for under 10kg it is every three weeks.  So we are going to call the case nurse with alexion tomorrow and see if there is new dosing instructions or what.

Comment by sabrina kiernan on December 10, 2012 at 5:35pm

Dustin our son ryan developed aHUS at 8 months old.  He was on plasma exchange, went into remission. Was not treated with Soliris as it was not available here in Ireland at that time.  Ryan then relapsed in February this year and has been on 2 weekly soliris infusions since.  Dose I am not sure of but can find out for you.  However they currently investigating to see if Ryan needs it after 11 days, with bloods, due to get bloods done this Friday.  Will keep you updated.  Think the dosage depends on the child's weight, however the frequency can change ie they can get it every 10 days if necessary. Hope you have been in touch with your hospital and all going good.

Comment by Svetlana Finley on December 10, 2012 at 4:00pm

There is one family on facebook, their child has AHUS since 8mo. and now little over a year and they on Soliris. If you have Facebook i can send their invite to you. They are not on this site but they do Soliris every 2 weeks.

Comment by Cheryl Biermann on December 10, 2012 at 2:51pm

Friend request Melissa Hearn, little Bryan began Soloris very young, around 3 months, if memory serves me right.  

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