Needing Answers

At six months of age Daniel had his doctors appointment. He had developed so well the doctor felt confident in saying he was “corrected age” meaning he was no longer a preemie baby but a healthy normal  6 month old.

The only thing about Daniel that seemed somewhat unusual was a rash that appeared to come and go all over his body. I mentioned it to the doctor that to me, it appeared to look like hives. Will has a history of environmental allergies both personally and in his family so it seemed like a reasonable observation.

We were scheduled to meet with an allergist.

After meeting with her she did a skin test and told us, he does not have allergies. I seemed somewhat skeptical and asked her how he couldn’t possibly have allergies if he was constantly developing a rash. Unfortunately his rash had a tendency to come and go and at the time of the appointment his skin looked clear, so she didn’t really seem to believe me. She wasn’t sure what the issue was or what I was seeing but she assured us it certainly wasn’t allergies. She said he may still develop them if there is a history in the family so wanted him to come back and see her in a year.

His appointment was in September 2014, as the months went by and got colder he seemed to be a happy, healthy boy other than his appearing and reappearing mystery rash. He didn’t seem bothered by it or itchy so we didn’t think more of it. Other than bringing it up when we had more doctors appointments.

Christmas came, and he appeared to have developed a sniffle and was starting to look pale but was not out of the ordinary with a kid with a cold.

January 2015, horror begins…

I received a call from the daycare while at work saying Daniel had a high fever over 100 degrees. I came and picked him up as is protocol their. I stayed home with him and for a couple days his fever never wavered. We scheduled a doctors appointment, they gave him Tylenol and sent him home with a diagnosis of a bad cold and antibiotics for potential pneumonia. If things didn’t improve in 48 hours to bring him to the walk in clinic. 48 hours later we brought him to the walk in, still fever.

They documented it, checked him over and called it a bad cold. Give him Advil and or Tylenol and take him to ER at Victoria Hospital in London if there is no improvement.

No Improvement – Hospital Visit #1

– Chest x-ray clear – lots of mucus -blood work clear

Go Home, give him Tylenol come back in 48 hours if there is no improvement.

No Improvement – Hospital Visit #2 (Day 10 of fever) Admission to Victoria London Children’s Hospital

– blood work clear – IV’s started – Chest X ray clear – lumbar puncture clear – blood work clear

-Nasal swab tested for RSV ~ POSITIVE!

Sent home, Tylenol/Advil : Things should improve in a couple of days. (still fever, still rash)

With some concerns I asked the nurse on staff if we would get to see a doctor one last time before we left, just in case the fever didn’t improve what we should do. The nurse turned to me and said “I think you have reached your quota of Doctor time, we have actual sick children here.” Stunned I said nothing, we packed our things and left.

Daniel, Will and I had three more trips to Emergency Room before we met with a doctor who suggested we meet with a Dermatology or Rheumatology doctor, by this time Daniel had developed a new symptom.

He was completely lethargic and refused to use his fingers on his left hand, he was eating less and less and his crawling had become more difficult. He appeared to be in constant pain

Desperate for answers and very worried as Daniel had now had high fever (over 100 degrees steady) for 20 days. We met with a pediatric dermatologist in London, he took one look at Daniel’s condition and told us we needed to see a rheumatolgist immediately! We called the ONE rheumatologist office in London where the receptionist very casually informed us we could get an appointment in March!! I tried to be calm but it didn’t take long before panic set in and I informed her that was ‘unacceptable’ and our son needed to be seen NOW, He had had a fever for 22 days and no one had been able to help us so far.

She apologized but the rheumatologist in London was on maternity leave and there was no one who could see him.

The dermatologist we met with called us back, he let us know he had tried to call the rheumatology clinic on our behalf but that he was also having no luck getting us an appointment. He explained he was a former fellow at Sick Kids Hospital in Toronto and that he suggested we take Daniel to Sick Kids Emergency immediately!! He called ahead to let them know we were coming.

Daniel, Will and I packed up and headed to Toronto

We sat in the emergency room at Sick Kids for 11 hours before we saw a doctor. The staff team had changed over multiple times and the new doctor we saw had not received the referral from the dermatology doctor in London. He looked at Daniel and asked why we were there. We explained he had had fever for 23 days and what his symptoms were. We told him we needed to see a rheumatologist at Sick Kids. Than he said this, “I understand your concern, and although this is urgent it is not EMERGENT. Where will you be staying? we will treat you as an outpatient and schedule you an appointment.”

I lost it! I burst into tears, and explained to him that I didn’t mean to be rude but we had traveled three hours to see someone and our doctor had called ahead, we couldn’t and wouldn’t go home and so we would be staying there camped out in ER until we had an appointment with someone. We would not be leaving.

Somewhat empathetically he told us he would call upstairs and see if they had room in the pediatric unit. For a child with a fever of unknown origin for 23 DAYS!!

We were admitted to Toronto

For all those parents out there advocating for your children, this is my lesson learned. TRUST YOUR INSTINCTS, absolutely no one knows your child like you do. If you feel that something is not right be persistent, seek help. Speak out for them! It could save your child’s life, it did for Daniel.

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