Question: I really need help, I don’t know where to begin. I apologize ahead of time for the length of this.
A little bit of background. I have two kids, a 4.5 year old boy and a 14 month old girl. My 4.5 old son has a immunodeficiency and I would say I’m pretty knowledgable regarding sicknesses, viruses, etc. It takes a lot for me to take my kids to the doctors as I know most illnesses don’t require antibiotics.
With that said, my 14 month old daughter is constantly struggling with her health. She’s seen an immunologist based on family history of an immunodefiency and has been told she falls in the normal realm at this moment. She’s started daycare at 3 months old, which I know can contribute to frequent infections and viruses.
When she was 5 months old, she had a double ear infection, massive congestion and a cough and was prescribed Cefidinir. A couple days off the meds, she spiked a fever. Nothing I haven’t experienced before, I monitored it for a couple days. One evening, a few days later, I changed her diaper and noticed she was burning up. So I took her temp and it was 104.9. I called her pediatrician immediately who told me to bring her to the closest ER considering she was only 5 months old.
The ER did some blood work, and saw she had a CBC of over 30,000 and admitted her right away and begin to do a ton of tests. Everything kept coming back negative, yet her fever persisted, this was now day 5 of fever. They put her on IV antibiotics and continued to test her. She continued to not eat, her CBC stayed high and her fever continued to be present. They went as far as to do a spinal tap, but everything came back negative. After 5 days in the hospital, and no answers, we were discharged with an undisclosed blood infection (even though cultures were negative). At time of discharge her CBC was still high but lower than 30k and we continued oral antibiotics. Her congestion and cough continued.
Fast forward to when my daughter is 9 months old. Her congestion has NEVER let up, from 5 months old to 9 months old she had over 7 ear infections. Finally in October we were referred to an ENT. The doctor put tubes in her ears and took her adenoids out. Two weeks later she had an ear infection. Our primary doctor then referred us to the immunologist.
Her initial bloodwork with the immunologist did not show any concern for her immune system minus needing a couple boosters. Her alkaline phosophate was extremely high in the 2300 range and her IGM levels were also high. She also had other numbers that were off but didn’t seem to concern the immunologist. The immunologist performed repeat tests to do a quantitive IGM and a repeat alkaline phosophate. Her IGM levels were in better range and her alkaline p was still high but lowered. He didn’t seem concerned and scheduled a follow up appointment in March.
Our pediatrician got a copy of her alkaline p tests and was a bit concerned and decided to run one more lab on it just to ensure it came down and as of two weeks ago it was in normal range.
One month ago, my daughter started coughing again, keep in mind her congestion hasn’t gone away since she was 5 months old, always stuffy, always congested. A month ago (13 months) she went in with a high fever, and cold symptoms. We were told it was a virus and bring back in a couple days if her fever didn’t let it. A few days later her fever hadn’t resolved, and she begin to have mucus/gunk pour out of her eyes so we took her in. She had an infection in her eyes and also a sinus infection, they prescribed Cefidnir again.
Last Wednesday, on day 9 of the cefidnir, my daughter spiked a temp. I let it play out to see what it would do. On Saturday morning she still had a temp of 103. By afternoon I couldn’t control it with medicine and called the doctor. They asked to see her since it was so soon after finishing antibiotics.
I brought her in and they said it was a virus and sent us home to give some TLC and instructed me that if her temp reached in the 104’s to bring her to the ER. By evening time, her temp spiked up to 104.5, we gave her a quick XXXXXXX warm bath and ran her into the ER.
The pediatric ER unit ran a bunch of blood tests and a chest xray. She came back negative for the flu, for a UTI, RSV, however her CBC was in the 26000 (déjà vu) and she had some inflammatory markers that were high. She was diagnosed with pneumonia. She is now on breathing treameants, antibitiocs, all kinds of stuff. This is the 2nd time in the last few months shes on breathing treatments.
At this point I am completely exhausted and have no idea what to do. She is sick every other week, usually with some type of temp. I know in my mom gut its something beyond “germs at daycare”. Any ideas, suggestions, clarity on what to do next???