For those that have prayed for ds5, here's an update.

[JudoMom]

His white blood counts and neutrophils have dropped again. They were really good in December and January after we changed his arthritis meds, but they were back to the same low levels when I took him in last week.

 

The medicine he's on now (Enbrel) supposedly has the least impact on the immune system of all the meds approved to treat Juvenile Arthritis.

 

I'm not overly worried that there is a hidden cancer or other issue anymore (just the extremely paranoid side of me, but I do my best to ignore her), but I am starting to become concerned that we won't be able to effectively treat ds5's pain, which seems to be getting worse. He's still on the Enbrel, but I don't know how long he we'll be okay with letting him stay on it. We've got another appointment with the hematologist at the end of the month.

 

Anyway, for those who are inclined to pray for him, I would appreciate it.

[Mom2legomaniacs]

This is a tough journey for you for sure. I am sorry you all are having to deal with this. I'll keep lifting him up.

[Janna]

Well, shoot! I was hoping his numbers would have stayed up! I'm so sorry. I'm so sorry he's in so much pain, too. I can appreciate the difficulty in wondering about the medication and how long to keep him on it etc. I'm sure it's very stressful. You can absolutely count on my prayers, C. Lots of hugs to you.

[Aubrey]

((Judo))

 

I don't know what to say. I hope things get better.

[8filltheheart]

I will pray for him. My oldest sister has RA and I absolutely cannot imagine a little child suffering through what she does. I am going to call her and get her to pray for him as well. I know that she will offer up prayers for him with all of her daily struggles. (her feet look incredibly painful.....something about the blood cell building up in huge clumps on her feet.)

 

I am so, so, sorry that you child has to suffer through this.

[TeaTotaler]

I've been wondering how he was doing. Jill,OK just informed me that you changed your name from threelops and gave me the link to this thread.

Will pray for your ds.

 

Take care,

VH

[WTMindy]

and prayers for both of you!!

[Jenny in Atl]

:grouphug: I hope all gets better soon. Nothing worse than when it's your child.

[JudoMom]

Knowing that so many are praying for ds5 is so comforting.

[Mamagistra]

Prayers here, JudoLops! :) Please keep us posted.

[PariSarah]

How very hard on you all.

 

Wish I could make it all go away!

[Doran]

Gosh, it's just so hard to have little ones who are struggling while there is little we can do to help. Bleh. I just hate it for you, JudoMom. I'm sure your little guy is such a trooper, and a blessing to everyone in his life. He's fortunate to have such a wonderful family, and I'm sure you all feel likewise.

 

Sending healing thoughts your way....for your heart, and his body.:angelsad2:

 

Doran

[Denise in IN]

Thanks for the update. Poor little guy, I can't imagine how hard it must be for you to see him hurting.

 

I'll continue to pray for your and your family.