Tuesday, February 21, 2012

Stymied

Keenan is an enigma
wrapped in a middle
surrounded by a mystery.

The poor kid has been physically miserable since coming home. As I've blogged about before, my little guy has suffered from giardia, rat dung tape-worm, cryptosporidium enteritis, and something else that I can't recall/could never pronounce.

Add to that ringworm and eczema, plus sores that ooze blood out of his scalp.

And add to that a child who has never been able to clearly communicate his feelings about his physical self. If I walk into a room and say, "Keenan, does your stomach hurt?" and then the doctor asks a minute later, then Cliff does 5 minutes later, we are all going to get different answers (all of which will likely make no sense whatsoever.)

He's never been able to articulate headaches, belly aches, tired, itchy, scratchy, pain, etc. Growing up through toddlerhood in Haiti, a place where nearly no one cared what physical condition he was it, he just learned to shut out that part of himself.

It's like he's detached from his own body, because he was conditioned that way due to neglect.

It breaks my heart.

I've known all along that something is just not right with this child. Pediatricians, our hospital's Infectious Disease unit, and the Children's Hospital G.I. clinic have listened politely, did a bit, and pooh-pooh'd Mama's worries.

"5 years in Haiti is a lot to recover from." "Not every child will grow a lot after being adopted." "Give him time.

Last month, I took Keenan in for his 7-year check up. The doctor took one look at him. "He looks horrible," she gasped upon walking into the room and seeing his pallor.

Uh-huh. I know.

"I believe he's severely anemic." She pulled down his lower eye lids, revealing grey-white flesh.

"Not good."

Finally, I felt like I had someone's attention. As she was examining him, she noted that he lost weight. I mentioned that his foot size has only grown a half size in the 2.5 years he has been home (something I've mentioned before, but for the first time, I felt like I was being listened to and not thought of as paranoid/hysterical.)

Looking at his nails, I mentioned to her (as I have mentioned to every doctor he has ever seen) that I've cut his toenails 3 times since he has come home from Haiti, July being the most recent time.

So she runs a CBC and it turns out that Keenan has no iron in his blood. Zip. Zero. Nada. No iron stores of any kind, although he does have hemoglobin.

She initially theorized that the iron he was taking in would go to make hemoglobin and then the parasites "utilized" (or ate, but man, the thought of parasites eating makes me feel all heebie-jeebie-ishy) the rest.

But guess what?

The parasite test came back clean.

Hmmph.

I did some research on anemia/iron deficiency, and there's something like eight possible causes of anemia.

Behavioral issues and learning disabilities are two of the side effects of severe iron deficiency.

And guess who has some severe behavioral issues and learning disabilities?

Keenan.

I am beyond frustrated that it has taken so very long to begin to put all of this together.

So, where I go from here, I'm not quite sure. To sum everything up, I have a child who:

1) has no iron stores, and does not look improved after 5 weeks of nearly toxic doses of iron.
2) the worst breath/bowel movements
3) little foot growth
4) no nail growth
5) behavioral issues
6) speech issues
7) learning issues

We have seen pediatricians, received Infectious Disease consults, and the G.I. Clinic at the Children's Hospital of Wisconsin.

Anyone have any suggestions or ideas? I am really tired of the whole: Let's try this dose for two months and see type of thing. I know, he's been home 2.5 years and surely he can hold out for two months of dosing, but he's my boy and I'm feeling impatient.

Enough is enough, and I'm really hoping that this is beginning of getting the help that he needs to grow and become healthy.

6 comments:

Rose Anne said...

Sarah,
Get a hold of some Chia seeds, put them in everything he eats. Or soak them and have him eat the gel.
they are a source of iron and help with the the skin and bowels.
He may need some probiatics!
You can get them on line or at some whole food stores! Get off all wheat and artifical coloring...
Saul came home in a little size 5 sandle and wore the thing 2 years.
The Chia has helped get somethings straighetened out also.
Hope this helps some poor baby!
God bless,
Rose Anne

Emma said...

This may sound strange, but have you considered trying to get him evaluated by an international adoption MD? I know there are many, and I'm sure you can find one closer to you. The one that comes to mind is Dr. Jane Aronson as an example (http://www.orphandoctor.com/services/postadopteval/index.html came up from a quick google search).

FENIX DRUM AND DANCE said...

sarah, what are those 8 causes of anemia? i assume that the parasite test that came back clean is a special one that tests for even the weirdest parasites? what does this new doc want to do?

FENIX DRUM AND DANCE said...

you probably already found this, but this article by a pediatric hematologist at Duke University....maybe you could contact her and she could help???

http://www.dukehealth.org/health_library/advice_from_doctors/your_childs_health/iron-deficiency-anemia-in-children

steph

Anonymous said...

Wow! That's crazy. I have no ideas for you as we have never dealt with anemia. Well, T's mom is anemic and can't take iron and she drinks dark red wine but I wouldn't recommend that for a 7yo. ;) J had a hard time telling me what was wrong too. He still says something hurts when it itches or he will generally say his belly hurts but can't tell me if he might throw up or something. And he's 14. It's hard to think about what these kids have been through. Sigh...
Amy(TN)

FENIX DRUM AND DANCE said...

I would say look online or get a consult as soon as you can with a pediatric hematologist. OH actually I just found that there is a place called the "Iron Disorders Institute" at www.irondisorders.org I bet that would be a great help!!! Lots of resources. On their patients page they say: On our website, we have provided numerous ways for our visitors to reach the information they need—ideally, within three clicks. We hope that you find what you need. If you do not, please take time to let us know. You can call us toll free 888-565-4766 or you can email me directly:

Cheryl Garrison,
Executive Director
cgarrison@irondisorders.org