Low Hemoglobin

[Dustin G. Wiggins]

Isla is having a hard time building her Heme levels up.  She had a couple of lapses of HUS in December but even before then she has ot been able to keep her Heme levels normal.  Hers seem to go up and down from the 7s to the low 9s.  Her ped neph is getting concerned with her inablility to build up her levels to normal levels.  All other levels are good right now except the heme.  Has anyone else had this problem and if so how is it being treated.  As always, any information is greatly appreciated.  Thanks.

[Linda Burke]

Hooray - love the good news! 

[Dustin G. Wiggins]

Update.  Isla had a treatment Friday and her heme was 9.8.  This is he best we have had so far.  Her doctor is hoping that the iron supplement is helping and is optimistic that we can get the level up.  She had also gained 1.5 lbs in the last month.  That is the first weight gain she has had since her first episode.  She is now 17.5 lbs.  We are shooting for 23 lbs so we can up the frequency of Soliris treatments if need be.  Thanks everyone for the information and prayers.  She has been one happy baby for the last several weeks......and that makes for happy parents. 

[lisa ann peterson]

Chloe used to get weekly epogin shots to help her low hemoglobin

[Dustin G. Wiggins]

Thanks everyone for the information.  The doctor has already put her on Fe.  He said it could take a few weeks to get absorbed into her system to see if it will make a difference.  I am going to take the doc to doc registry to him on her next treatment.  He actually went to a conference with alexion on Thursday.  Hopefully he will get some information he can use with Isla.

[Heather Still]

Hi Dustin.  My son, Ryan, has been struggling with aHUS for 10 years now.  He still maintains partial kidney function and is now on a regular schedule of Soliris every two weeks.  He has been on oral iron and folic acid since diagnosis.  He has also required Procrit or Aranesp injections to stimulate red blood cell production since diagnosis.  We started with Procrit, that is given more often than Aranesp - I believe we did that weekly where the Aranesp we use now only requires me to give it every 8 weeks or as needed if his H&H drop too low before then.  And as others have mentioned and if fluid overload is not of overwhelming concern, a blood transfusion for the initial boost with one of the injections longer term has been done as well.  I don't know her situation and what treatment, if any, she is currently getting but in my son's case the HUS was always smoldering which caused the low counts.  Hope this helps and if her Nephrologist needs help the doc to doc registry is a great place to start.  Best wishes. 

[Donna Kolp]

Also, Jonathan is on dialysis, but before he lost his kidney function, when he was a baby,  he did take oral Iron supplements, like Poly-Vi-Flor, which are drops. :)

[Donna Kolp]

Hi Dustin,

Svetlana is right, if her Iron stores are low, her body will have a very difficult time making red blood cells. I would ask that she has her Iron, Iron Binding, Iron Saturation and Ferritin checked.  Low Iron and Ferritin would also effect her Hematocrit and Platelets. Praying that she turns the corner and the Dr.s can solve this.

Donna 

[Svetlana Finley]

did they check her iron levels? Low iron can keep hemoglobin low. Anna has sometimes low hemoglobin and she usually has low iron at that time and gets few iron infusions

[Cheryl Biermann]

Perhaps a call to the docs on the registry is in order?  An obvious quick fix would be to look at a transfusion.  We had wobling in nearly every category but not this low of Heme since dialysis, when there long stretches of low h&h and platelets.