New to this site - 20 month old with ahus

[Kerri Grey]

Hi all, I am new to this site and have been looking around on the net for supports and info on this horrible disease.
I have a 20 month old son - ashley - who was diagnosed 13 months ago with ahus and lets just say that the last 12 months have been a massive roller coaster ride. Ashley was on PD for 8 months then came off and was doing plasma infusions which did work so went to plasma exchange which is not really working either so now his doc is trying to apply for the trial of the solaris but not sure if he will be accepted or not cause his renal function is not very good at the moment and his last biopsy showed nearly dead or serverely damaged kidneys. At Ashley's last flare his LDH levels were nearly 3500 and his creatinine levels were 240 0r 0.24. does anyone know anything about adenovirus leading to ahus cause Ash had this 2 months before diagnosis and i am wondering if maybe this could be the cause i have been trying to find info but am finding it hard trying to sort thru all the medical jargon. after living with this for 13 months the thing i find hardest to deal with is the not knowing what my little mans future holds and what tomorrow might bring i think if i had some certainty even if it wasnt great news it would be easier to deal with. Anyway thats my rambling introduction hope to chat to you all soon.

by the way i am from Australia is anyone else on this site from Australia.
Cheers Kerri

[Colette Ann Frysz]

Hi Kerri!

My daughter Jessica was diagnosed at the age of 11 months and her disease very quickly led to complete kidney failure. She is now two weeks shy of 22. So back in 1989 we had nothing. We did not have plasma exchanges or anything else, not even any sort of experience or information to dwell on. The doctors and us went in this thing blind and let intuition more than anything guide us along. She is 22 and is on this website to talk about it. So if I can offer you anything it's to keep hope alive. We know a lot more now than in 1989. It is a horrible disease but it doesn't have to consume you or your family. Jessica has lived without kidneys for 21 of her 22 years. I always tell her that she has obstacles but she can do the best she can with what she does have. In 1989 I did a lot of trying to find things out about Jessica's illness. There just was nothing. Gradually I was able to read a bit here and there as things got published and researched. I have thought long and hard about what happened and what could have caused the illness. I believe in my heart that if we could discover that we could find a simple solution to the whole problem. I know that more times than not finding that one thing is harder than finding a needlle in a haystack as they say. With the coming of Solaris my daughter and I are investigating the possibility of a transplant for her. So hang in there. Your son's future could be a lot brighter than it feels at the moment.

[Kerri Grey]

Hi jodi, yeah it does sound very familiar except we have only been going thru all this for 13 months. Ashley has had hundreds of plasma infusions and been on the plasma exchange for 3 months 3 times a week and sometimes 5 times a week but his hus seems to be getting worse not better. Ashley still has a bit of kidney function as well but is on massive doses of lasix to produce an ok urine output. we wont be part of a trial either cause they not trially it on kids that young yet but luckikly for us in australia we dont have to worry about the cost of medical expenses as the hosp covers it or the government covers it. I read some of the stories of how people are worried about insurance companys covering expenses and i am so lucky to not have to worry about any of that we dont have to pay for a thing dont know how i would cope if i had that stress on top of everything else. Thanks for the support. have the docs said how long they think his kidneys will last with the damage that is there. look forward to speaking soon.

[Jodi Kayler]

Hi Kerri, I have a 7 year old boy who was diagnosed at 11 mos. Your story is very familiar. Coen had over 400 plasma exchanges with no remission in 5 years and many severe relapses. All of Coen's genetic testing has come back negative of any mutations. We finally started Soliris in April of 2009 and it has been the greatest thing ever! The disease is completely inactive for the first time. He still has partial kidney function and since the start of Soliris, kidney function has even improved slightly. We are not part of a trial but were able to get approval through our insurance company since typical treatments were not effective. Of course, no one knows the future, but for now things seem to be looking up. Best of luck to you and thanks for sharing your story. I hope you get approval for Soliris. Let me know if you have any questions.

[Kerri Grey]

Hi all,
Sorry to confuse you all i meant to write that the plasma infusions were not working thats why we went to plasma exchange. It looks like we might be starting solaris in the next couple of weeks, ashley doctor has spoken to the drug company about ashleys case and verbally they have said that they think there will be no problems with ashley being permitted to use it now its just the red tape to get it all official. Ashley spent another couple of days in hospital at the start of the week as his renal function had deteriorated a bit and his potassium levels were at 7. Thanks Cheryl for your encouragement it is so great to read and listen to other peoples stories cause i feel so alone most of the time, even family and close friends dont understand they think ashley will have a transplant and that all will be fine. 3 other children were also diagnosed with ahus last year at the childrens hosp we are at and they r all doing really great (dont get me wrong that is fantastic for them and i am so happy for them) but i have no one to really talk to that relates to all the ups and downs we have gone thru. Thanks Bill for your information i did ask ashleys doc about it and he said the same thing its hard to sort through all the information. lisa i think it is written differently in Australia cause it is only ever written as 0.24 with a normal range of 0.01 - 0.05 or 240 with a normal range of 10 - 50. asley has had some genetic testing done with negative results for factor H factor I and MCP we r still awaiting some further results on the others which have been sent to france our first lot took 6 months to come back with a result. Thank you to everyone for your comments its so nice to know there are people are there to talk to that are going thru the same thing and that understand.
Kerri

[Amy Swarbrick]

Our son Brody was first diagnosed at 11 months old and received plasma infusions for almost 6 months. Brody will be two in April and is doing great. Hasn't had an infusion since August. I am also scared to death at what the future holds but have learned to just take it day by day and love Brody with all my heart. If the plasma infusions were working why did they switch to plasma exchange? With Brody they just slowely tappered him off the plasma infusions. Welcome to the site and we will pray for your little man!

[Cheryl Biermann]

Welcome Kerri, It looks as if everyone has shared their expertise with you quite well to get you started. I would just like to share with you some hope then. Many of our children have been on and the off dialysis and then back on and off again, this is interspersed with being treated with plasma pheresis or plasma infusions. The numbers will tell your doctors which direction to go. If pheresis was working and they backed off to infusions, it may indicate he just needs more time on the pheresis. I would like to tell you that depending on your determination to give him as typical a life as possible is up to the disease, his doctors and YOU. You are the expert on Ashley, trust yourself first and foremost. It is possible to give Ashley a very happy life, even if most of it is spent in the hospital, as a parent of a large family, I have learned to focus on everyone's streangths and not weaknesses and their interests. Ashley is blessed to have you as his parent as you have searched until you found help. He will blossom under your care...there will be set backs, there are in everyone's life, but that DOES make the progress all the more precious. Ironic, but true. He can live a happy, fulfilling life while being treated with blood products, dialysis or Soliris. You'll see there is a future for him, and it is bright, I know it doesn't seem so now, but it can get better. Whatever this disease throws at you, live each day with joy, if not for yourself, then for him, because every day together is a treasure. Good luck, please ask any questions and I think you will be especially interested in reading the parent's perspective and the Solliris forums. Keep us up to date, it's wonderful that you have found us and we look forward to getting to know you.

[Linda Burke]

Hi Kerri,
Pretty much everything on the web (NORD, Web MD, etc) traces back in some small way to The Foundation for Children with Atypical HUS and also to a specific cadre of researchers who delve into this rare disorder. The Foundation for Children with Atypical HUS is well acquainted with many aHUS researchers, and a main goal of our organization is to supply research funding and grants to explore aHUS issues. This site is the interactive site for the Foundation, our main info site and other resources are noted in the Links Box on the Home Page. Due to the rarity of aHUS and the severity of its complications, we use this site to share information, inspiration, and insight into aHUS. Please do feel free to post questions and comments, since many of us are parents who have already traveled your path on our own child's aHUS journey. Remember too that there are links for your doctors on the Home Page, both with aHUS researchers at the University of Iowa (research, a registry, genetic testing, etc.) and also in the Doc to Doc Registry (physicians who have already treated young aHUS patients with Soliris, for example). We're here for you.....

[Bill Biermann]

Kerri,

Aedno Virus may have been the trigger, but the trigger is not the cause....the trigger is just the event that sets off the genetic weakness. As an analogy, lets say you have a chain, and the chain is strong, except at the Certain link. Now lets say that chain is not made of steel, but instead, its made of proteins.
WHen you body puts a load on that chain, and it breaks, it might be easy to say that the "Load) caused the problem. Howerver , the real weakness was there all of the time.
So the Aedno virus did not "cause" the problem". It simply put a load on the chain, and the body "broke" at the weak link.

Hope that helps

Bill Biermann

[lisa ann peterson]

your in the right place.. the creatnin was probably 2.40 unless the measure it different in australia(sp?) in march it will be 2 years since my lil miss was diagnosed and rollercoaster it is.. dont give up the fight.. my lil girl did dialysis and pheresis every other day for a long time at the begining.. hopefully they find something that works soon.. have they done genetic testing yet? ask any questions you have alot of us have gone through differet things and we might be able to answer things that you have been wondering about..i looked up the adenovirus and it is one of a group of closely related viruses that can cause infections of the upper respitory tract.. all kids have different triggers and alot of us dont know what they are.. god bless your lil one and keep us posted

[Heather Still]

Hi Kerri. I have learned a lot about aHUS since my son's diagnosis almost 8 years ago, but I've never heard of anything called adenovirus. It is known that there is typically some sort of stress on the body that helps set off the initial bout of the illness. It is a long hard road and it sounds like you've been through the ringer. You may want to have his doc contact someone on the "Doc to Doc" registry on the home page of this site if Ashley's doc is uncertain of which direction to take next. If the diagnosis of aHUS has been made I don't see why any additional biopsy would be necessary. The labs should tell the doc enough. Most kids actually in the clinical trial for Soliris have to be over the age of 12. Some younger are getting the drug, but aren't actually part of the trial. I hope you find some useful information on the site. Read through the blogs and forums and just keep asking questions, someone usually has some input to offer. Good luck.