my lil Soleil sunshine

[sophiemom]

I am the mother of a beautiful 3 year old named Sophia Soleil, soon to 4 in June, who was just dx with SAA. She has been dealing with strange illnesses since she was 8 months old when she first dealt with RSV and an antibiotic resistant ear infection. She then had one infection after another, dropped vaccines titiers and had failure to thrive. She then acquired Epstein Barr, which led to rashes that took a year to go away and seizures whenever she gets sick. Although she was sick, her labs were reasonable with what she was dealing with until about a year and half ago, when she began going leukepenic when sick and kicking out immature cells. After being pushed by an annoying momma, docs finally did a bone marrow biopsy and we just got the results back. Due the results they have dx with SAA, although the cytogenetics are not back yet and there was pseudo Pelger Huet cells and other abnormalities in her myleoid cells, so we are waiting to see if there are more indicators that it is actually MDS. Also, the docs say they still need to see why she isnt holding vaccine protections, although it could still fit in. Despite illnesses and tests.. she is an amazing, intelligent, and strong willed lil girl who blows my mind everyday! With her being so young, I have no clue where our path will lead now.. I try to keep everything very positive in our house and we dont focus on "sick kid" stuff... but inside, esp late at night, my heart breaks. No child of 3 should have to know what her white blood cells do or have the color of blood test caps memorized. Thankful that there is this forum, where I can learn and share.

[triumphe64]

Where are you and your doctor located?

[Neil Cuadra]

It's sad that any youngster has to go through medical ordeals (and their family along with them). Most youngsters easily get past RSV and the Epstein Barr virus. Perhaps persistent neutropenia (which could be from aplastic anemia) is the underlying cause of Sophia's ongoing problems. Give yourself a lot of credit for getting the bone marrow biopsy done. These could be the clues that lead you to treatment for the underlying problem and not just the latest infection.

[sophiemom]

Triumphe64- We are very lucky. We live in southern New Jersey and see the Philly skyline from our house, so through everything we have seen specialists at the Children's Hospital Of Phila. She has specialists in lots of different areas at CHOP: ENT, derm, immunology, GI, neuro for the seizures and now the hematogoly through the bone marrow failure center. We have also have talked with Dr Hoffman from Dana Farber/Children's Hospital in Boston, which specializes in ped MDS treatment and research. So super lucky to have the team we have now. Besides low WBC numbers and the dyplastic bone marrow cells, she is pretty healthy right now, so happy about that also