What medically is going on with DS1

[hillview]

Glad he's home and I hope things continue to improve. How is he feeling? Is he still having all the anemia symptoms?

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honestly he feels lousy. Not better today. It is concerning. I took him to CVS and he was tired from walking around for 7 minutes. He is 6’2’ 185# and a sports player and so it is very concerning. Glad he is home.

[MSWR0319]

honestly he feels lousy. Not better today. It is concerning. I took him to CVS and he was tired from walking around for 7 minutes. He is 6’2’ 185# and a sports player and so it is very concerning. Glad he is home.

I'm so sorry to hear he's not feeling better. I remember when my hemoglobin was that low. I've never felt an exhaustion like that from doing almost nothing. I hope he starts feeling better soon.

[basil]

Sorry he's feeling sick. Hope he feels better soon!

[zukeypur]

I'm just seeing this....did they do a B12 and Folate? I know it was mentioned earlier, but that's the classic "case study" for a B12 or Folate deficiency. In hematology, we follow the "rule of 3," meaning that the RBC x 3 should equal (roughly) the Hgb, and the Hgb x 3 should equal the hematocrit. Those all look really low. The other thing that obviously caught my eye was the high MCV. That means his cells are huge, and the fact that the RDW is normal means that all of his cells are huge, and that this has been going on for a while. The RBCs replenish about every 120 days, so the fact that he basically has no normal cells indicates that this is chronic. His retics are high, which means that his bone marrow is trying to pump out as many RBCs as possible.

Has he had any intestinal upset lately? Diarrhea, Crohn's, Celiac, etc? If so, that could be interfering with his B12 absorption. Also, did they mention anything else in his CBC like "hyperpigmentation, HJ bodies" or any other weird words? Any other abnormal tests (bilirubin, AST, ALT)?

This stinks, and I'm sorry you all are going through this.

[firstbaby]

Sorry he’s not feeling well. I hope he gets better soon and you get answers!

[hillview]

4422161[/URL]]I'm just seeing this....did they do a B12 and Folate? I know it was mentioned earlier, but that's the classic "case study" for a B12 or Folate deficiency. In hematology, we follow the "rule of 3," meaning that the RBC x 3 should equal (roughly) the Hgb, and the Hgb x 3 should equal the hematocrit. Those all look really low. The other thing that obviously caught my eye was the high MCV. That means his cells are huge, and the fact that the RDW is normal means that all of his cells are huge, and that this has been going on for a while. The RBCs replenish about every 120 days, so the fact that he basically has no normal cells indicates that this is chronic. His retics are high, which means that his bone marrow is trying to pump out as many RBCs as possible.

Has he had any intestinal upset lately? Diarrhea, Crohn's, Celiac, etc? If so, that could be interfering with his B12 absorption. Also, did they mention anything else in his CBC like "hyperpigmentation, HJ bodies" or any other weird words? Any other abnormal tests (bilirubin, AST, ALT)?

This stinks, and I'm sorry you all are going through this.

THANK YOU! His Folate and B12 were good (normal range) and he is now on vitamin tablets to help him keep them up. He was dx with idiopathic (we don’t know why) autoimmune hemolytic anemia. Billi is super high (as you’d expect when your immune system is killing RBC). We get another test tomorrow. He is now on 120 mg of Prednisone a pretty high dose. Here are some basics:
hemoglobin
Baseline 14
5/10 8.1
5/11 7.9 noon (then started steroids)
5/11 7.9 pm
5/12 8.3 am
5/12 8.0 noon
5/12 8.1 pm (infusion expected a 9 after)
5/13 8.6 am
5/13 8.4 pm (first oral steroid lower dose)
5/14 8.5


Reticulocytes
5/12 .308
5/12 .295
5/12 .303
5/13 .311
5/13 .297
5/14 .287


Glucose
5/11 100
5/12 177
5/13 164
5/14 120

[sf333]

So sorry to hear that your family is going through this. I have to say - your mom instincts were on point here. You’ve done great by him and I hope he’s feeling better soon.

[georgiegirl]

I really hope they figure out what’s going on and he starts to feel better soon.

[Melbel]

Just another gentle word of caution. If underlying infections (i.e. Babesia, Bartonella) are causing the hemolytic anemia, then steroids may make things worse because they suppress the immune system. Steroids also make antibody testing less reliable for the same reason (immunosuppression). The best hospitals and providers missed our infections with terrible consequences. Please feel free to message if you want/need a referral.

[bisous]

OP, those glucose numbers, especially the one on 5/12 is kinda high. Was the doctor at all concerned? I know when kids with type 1 diabetes are on a steroid they often have runaway high blood sugars but I've always considered that that was because their bodies aren't regulating insulin in the blood and instead we're relying on external formulas, etc. I just wonder if that prompted any potential red flags to the doctors? Also, please know that I'm no kind of expert at all! I am just seeing those numbers and it gives me questions.

I truly hope the doctors figure it out. I'm praying for you to that in! Clearly something is happening. I'm also praying that your DS is comforted while he is feeling so crummy!