SOL21 Day 15: the cycle repeats itself

Daycare kids are always sick. Or at least so it seems. The dreaded words it must be viral are the absolute worst. I’ve heard them more times than I can count. So when we went into lockdown in mid-March 2020, one would suspect that my kids would be the healthiest ever. No daycare. No germs.

WRONG.

George first had a positive strep test on February 11, 2020. It seemed he never recovered or the meds just weren’t strong enough because that damn fever kept coming back.

March 19, 2020
March 30, 2020
April 14, 2020
April 28, 2020
During his first round of fevers

Everyone was scared. I was pregnant. What if this was contagious? Could I even go to my OB appointments? The pediatrician would not see us. They kept telling me to treat it as if it was viral. Give Motrin and Tylenol. Stay home. Hydrate. But I wouldn’t stop calling the nurse line and they eventually they agree to see my little man thinking maybe it was an ear infection. Masked up, we made our way to the empty doctor’s office. His little body was checked for ear infection, strep and flu. It all came back negative so he was sent for blood work. The doctor called and sounded alarmed. His inflammation markers were elevated extraordinarily high. It could be nothing. It could be something. Something bad. There’s no way to know for sure without more tests and a specialist. For now, they wanted us to track everything.

May 21, 2020
June 9, 2020
June 26, 2020
July 14, 2020
July 31, 2020
On a not so good day

Each time, his little body burns with fevers sometimes reaching over 105*. Tylenol has stopped working. No one has answers but there are all sorts of suspicions. Our pediatrician thinks perhaps it’s something called PFAPA Syndrome although that in and of itself is an exclusionary diagnosis. It is characterized as very high fevers which arrive in cycles. Children also can have mouth sores, sore throats and swollen lymph nodes. Other children experience extreme joint pain. For our little man who has very little language, we have no idea how he feels.

Our first 105*+ fever—not our last

On August 4, 2020, we go to see a Pediatric Infectious Disease doctor at Lurie’s Children’s Hospital at the urging of our pediatrician. I am less than impressed by the way she dismisses these fevers as an inconvenience. That was her word. Inconvenient. It is very inconvenient but it won’t hurt him. I cannot imagine that a 105.4* fever every 18 days isn’t causing some internal damage to my little man who courageously endures it all. She won’t hear of additional testing and tosses some prednisone our way. I try to argue that she cannot diagnose him with PFAPA if she hasn’t excluded everything else. Clearly she has no interest and we leave as frustrated as we arrive.

At Lurie’s
August 20, 2020
September 11, 2020
September 29, 2020
October 10, 2020
October 16, 2020
November 2, 2020
November 20, 2020
A fall fever flare

Although the prednisone causes his fevers to break quickly, they leave him angry, sleepless, unable to control his emotions, without an appetite and far from our happy little boy. In many ways, it is worse than the fevers themselves. They also cause the cycles to shorten to just 10 days between fevers with less recovery time before the next 105* wave hits his already tired body. He is losing weight. I make an appointment with a different specialist.

We see a Pediatric Rheumatologist at Comer’s Children’s Hospital. I am blunt when we meet and tell her that I expect to be heard. That I am my child’s advocate and I will be part of this process. She 100% agrees and a team approach is formed. She agrees that continued prednisone treatment is not the answer. It can stunt his growth and he is already so tiny. It can leave him more susceptible to germs and in the world of Covid, that is not what you want. Stepping down off prednisone is a long process so we need to use it sparingly. The dosage the last doctor prescribed seemed to be near double of what she would recommend for a child so small. So we come up with a new plan to help prevent the cycles in the first place. We are going to try a daily medication to be given in the morning and evening. We hope it will lessen the intensity of the fever and eventually spread out the cycles to a few times a year rather than every 10-18 days as we’ve been tracking. But Covid has added another wrench to our plans. The pharmaceutical companies have pivoted to creating meds to treat and prevent Covid. The med we need is in national shortage. We can get the pill form but we cannot get the liquid. We cannot get him to take it no matter what we do. So we keep tracking the fevers but not much else.

At Comer’s
December 2, 2020
December 15, 2020
December 20, 2020
January 7, 2021
February 5, 2021
February 23, 2021
and today
Just 5 minutes after he woke up this morning

We are currently trialling a new preventative medication. He takes it once a day. But the fevers still come. We got an extra two fever free days this month. A couple months ago we got almost 30 days between cycles. We’ve discontinued giving him prednisone and will only use it if necessary. The long term risks are not worth the short term benefits. So fevers that lasted 3 hours with prednisone are now lasting 3-5 days. We wake every three hours around the clock to make sure he is medicated. We are tired. His body is tried. Not a bit of food will cross his lips for the next 5 days. We allow him to snuggle whenever he wants. Sleep wherever he wants. Eat whatever he wants. Watch whatever he wants. McKenna is jealous. Theo is left contained to his crib, highchair or jumper more often than I would like to admit. We are working in survival mode when these days hit. We didn’t return George to daycare this school year because of these fevers. He would be excluded more days than he would be included. And we aren’t made of money. We found a sitter who is wonderful about tracking his fevers with us. She catches them as quickly as I do and is quick to comfort him.

He should be napping. I don’t have the heart to take away his favorite toy.

Our poor boy has had Covid tests and flu swabs and strep swabs and blood work. He is terrified of the doctor and has true PTSD. The mere mention of the doctor causes him to cry to the point of hyperventilation. McKenna comforts George by telling him that he is strong and brave like his beloved super heroes. He and I have worn capes and masks to appointments. The staff at Comer’s is always wonderful and so kind with him. We are blessed to have this excellent facility where he can be treated.

Being extra brave at Comer’s

We are currently in the middle of his 23rd fever cycle in just under a year. TWENTY THREE. My heart breaks every time I see his the color drain from his face while the dark circles under his eyes deepen. This is how we know that it’s a matter of hours before his fever will spike. We are in the process of getting genetic testing to help identify any mutated genes. This will hopefully diagnose what type of Periodic Fever Syndrome he has and then hopefully drive treatment. This all could disappear around age 8. It could hold on until puberty. In rare cases, it never goes away. Sometimes removing the tonsils and adenoids will break the cycles all together. Sometimes it doesn’t. And so we wait. We make the best of his good days. We track. And we wait some more.

I am writing for the 2021 Slice of Life Challenge.

15 Comments

  1. This is heart-wrenching. Sometimes the medical community angers me so much. When they don’t know, they need to own it. I don’t have answers for you and have never experienced anything like what you’re dealing with, but what I can say is ice packs helped me this past summer when I had Covid and could not get my temperature lowered any other way. I do hope you find both answers and relief very soon. Peace and comfort to your little guy and all your family.

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  2. I am sorry you are all going through this. I know how I felt before I was diagnosed with Fibromyalgia. For three years I was in pain yet dismissed by doctor after doctor who just threw different meds at me until one rheumatologist really listened to my story and helped me. I can only imagine what is like for your little guy. I hope this newest treatment helps until they find something more definitive. You and your son are warriors.

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  3. Oh goodness, Karyn! You are Wonder-Woman! I can’t imagine- and during a pandemic and while you’re pregnant/raising a newborn with sleepless nights as it is. I just continued to be stunned as I kept reading your story. Fever after fever. The picture of the superhero masks touches my heart. How special! Have I ever mentioned before that I think you’re amazing?! ❤ Praying for George.

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  4. You are truly amazing. You have a warrior heart. You are a bad*** mom. I didn’t have the energy or bravery to write about today, but we received not good news regarding my unborn sound that sent us to a specialist for further ultrasound stuff. It’s escalating again to yet another specialist. Like Glenda said above, the medical community can be so infuriating. I’m praying for your family to find/be provided answers. ❤️

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  5. This is absolutely awful, how you and your family and your little son have suffered. I can’t understand why no one can work out what is going on. I do pray they find the right diagnosis soon and it is something they can medicate or prevent recurring.

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  6. Pingback: SOL21 Day 18: not quite speechless | Karyn In The Kitchen

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