Comments on: Jeryn’s Story

By: Lacey Meyers

Lacey Meyers — Thu, 27 Oct 2011 14:36:16 +0000

When I read stories like this I get so much hope. I have a lil boy tanner who is 2 he has had and inhibitor since he was 8 months old. After many different products we found out he is highly allergic to all recombinant products so we had to switch to plasma which didn’t help either so now we are trying plasma with Von willebrand and it seems to be working are inhibitor has gone from 850 to 140 which is still very high and every day is a battle but all we can do is stay positive and watch him live life as a happy lil boy who let’s nothing stop him. And wish that one day we will see single digit numbers that eventually will bring us to zero..

By: ciera frison

ciera frison — Fri, 26 Aug 2011 02:43:57 +0000

if anyone out there has a newborn with hemophilia plz email me i would love to chit chat about this disorder!

By: Fallon F

Fallon F — Fri, 10 Dec 2010 23:30:31 +0000

Thanks for posting your story! I have a 2 mth old little boy with the same thing(hemophilia type a severe) we found out about one month after he was born so we are just coming to grips with everything. Reading blogs like this help me understand that we are not alone.

Praying for Jeryn!

By: Krystal G

Krystal G — Mon, 18 Jan 2010 04:44:15 +0000

New update on Jeryn..His inhibitor titer is 64 at this time, which is not good. We are going Tuesday Jan 19 for Rituximab. I understand that after this first dose Jeryn will then start taking Alphanate daily. Just keep him in your thoughts and prayers..Thank you all!

By: Lacy Watt

Lacy Watt — Mon, 28 Dec 2009 10:05:44 +0000

I know every Hemophiliacs journey is different. My son is factor 8 severe. We have had our road blocks in our journey but nothing like Jeryn’s. After reading your story as a mother my heart goes out to your family. My family told me that all mother’s are mama bears but Hemophilia mother’s are lionesses ! Thanks for sharing and keep up the fight !

By: Carri Nease

Carri Nease — Fri, 13 Nov 2009 19:21:56 +0000

Hi- I saw Jeryn’s story & wanted to let you know, we too understand about inhibitors being at unmeasurable zero but still having cruddy recoveries. My little guy, Connor and his older twin Tyin were both discovered to have inhibitors at about 6 months old- at 11 months old we had central ports placed and factor dosing commenced daily. After about 8 months of daily dosing, our inhibitor levels were unmeasurable but the recovery wasn’t good– eventually, Tyin’s levels went to mostly normal and while the doctor’s consider him a success, our HTC nurse & primary Hematologist know that we consider him to be In Remission– we know it could come back, but we hope for the best and right now it is working fine.
Connor on the other hand had a “Zero” level for nearly a year and then Popped back up with a 2, then a 7 then topped out at just above a 13… we were still doing daily doses of 2000 units of Advate on a 25lb kid (he is turning 4 in a couple weeks & has just topped 28 lbs) and he’d have it down to near nothing in 45 minutes. We switched to alphanate. (I told that story on MBB if you want to read it.) and dispite the fear and misgivings & such, it seems to be working for him. His recovery levels have been getting better though it is a roller coaster- and although his inhibitor is staying, it is right now under 5 at last levels in October… I don’t know what you have thought to try, but I can say that Plasma Derived factor seems to be doing the trick in our case & if you have questions- do feel free to email & chat.
Good Luck!!
I’d love to swap tricks & suggestions!
Carri, BruiserMommy to Tyin & Connor

ps- the website above is not updated regularly but does have some of our story.

By: Joshua K Pekelo

Joshua K Pekelo — Mon, 02 Nov 2009 15:07:51 +0000

I love you jeryn kade!!!

By: Krystal G

Krystal G — Sat, 31 Oct 2009 04:15:41 +0000

DD..how old is your son? We will keep you all in our thoughts and prayers!

By: DD

DD — Wed, 28 Oct 2009 05:08:35 +0000

Thank you for sharing. My son Ben is just starting on the high tither inhibitor journey, and it is enouraging to hear that you guys are able to hang in there.

By: Jenifer Williams aka NANA

Jenifer Williams aka NANA — Tue, 27 Oct 2009 05:24:21 +0000

Jeryn is not only my grandson but he is also my hero. He is a fighter. He will never give up and he will never quit. I have faith that one day a cure will be discovered. And Krystal and Brian you are also my heroes. Jeryn is very fortunate to have you as parents. Because like Jeryn you are also fighters that will never give up and never quit. You are always in my prayers. I LOVE YOU