Realisticdreams-F/U from fevers

grbnik · November 2012

Hi there,

I had a question about fevers you responded to about your LO. My daughter has been getting high fevers as well, to the point where I have researched Periodic Fever Syndrome. The thing is that her fevers are typically linked to an illness (flu, ear infection, etc), so aren't patternistic (that I can tell). You had mentioned some prophylactic antibiotics. My DD got tubes, which we thought helped everything, until she got the flu last week, and had another 104 fever. She hasn't had another ear infection, but in her 12 months, she has had the flu 6 times, many of those with really high fevers. Why I ask this: my son who is almost 3, puts all of her toys and binkies in his mouth, they share food, etc and he never gets a fever or any illness. I am wondering about her immune system. Can you talk to me about these fevers your LO was getting, and how the antibiotics have helped?

Thanks!

realisticdreams · November 2012

grbnik:
Hi there,
I had a question about fevers you responded to about your LO. My daughter has been getting high fevers as well, to the point where I have researched Periodic Fever Syndrome. The thing is that her fevers are typically linked to an illness (flu, ear infection, etc), so aren't patternistic (that I can tell). You had mentioned some prophylactic antibiotics. My DD got tubes, which we thought helped everything, until she got the flu last week, and had another 104 fever. She hasn't had another ear infection, but in her 12 months, she has had the flu 6 times, many of those with really high fevers. Why I ask this: my son who is almost 3, puts all of her toys and binkies in his mouth, they share food, etc and he never gets a fever or any illness. I am wondering about her immune system. Can you talk to me about these fevers your LO was getting, and how the antibiotics have helped?
Thanks!

Sigh. Our poor M is such a mystery to everyone. Her fevers really never did have a TRUE pattern to them, sometimes they would be every 3 weeks but then they'd go to weekly, or 2 days at a time to 7 days at a time. They did diagnose her with PFAPA but I think only because they didn't know WTF was wrong with her, and some of her labs pointed towards it, within 24 hours of onset of the fever the labs to test for PFAPA are the SED Rate and CRP.

Let me backtrack before the PFAPA diagnosis, she started the fevers before she was a month old, and by the time she was 4 months old she had had, "15+ viruses" according to the pedi. We were sent to hematology/oncology when she had atypical blood cells show up to rule out cancer after we saw immunology initially.

When her labs are done by hand (not by a machine) they don't come back as being atypical. She would have high lymphocytes low neutrophils, all kinds of crazy labs.

They drew her immunology labs. Her IGG and IGA were non-existant. She couldn't get anymore of her shots (she had the first set, I believe) because of that. She was diagnosed with hypogammaglobulinemia. They have changed that to the transient form since she her levels are close the normal now, opposed to zero.

Her fevers still continued though, and the older she got the higher they would get close to 106, and she'd be running around, tylenol & Ibuprofen would bring it down to 103, if she missed so much as one dose, back up it would go. So, we were given prednisone to give at the initial onset of the fever in hopes that it would cut it out. If her fevers would have continued we would have got to rheumatology.

However, we had a urology workup because of all of P's issues, even though we assumed they were all spinal injury related, just to be safe.

She had reflux on both kidneys, grade 2 & 3 and her kidneys' were really small. She was growing in height but not gaining weight,still. She was in the <5th % for weight. Kidney growth/size can be directly linked to failure to thrive but is mostly seen with height, not weight.

So, we started her on the daily antibiotic for her kidney reflux. 3 months later her kidneys had grown a lot! And, not one fever since we started it. Her urine was cultured at almost every fever, so it doesn't make sense that all her fevers were from UTI's but it's still pretty weird.

If I were you, I would start with trying to get in to see an immunologist, if you need a referral get one, but they will need your records anyway. Keep track of her fevers, write everything down. Go back if you can and try to guess when they were/how long they lasted/how high they were. Some doctors will send you away for a couple months and have you come back when you have a log.

At the very least, your pedi could order the immune labwork before you go, it has to be done a certain amount of time after she gets shots though, so make sure it's scheduled correctly.

If you have any other questions, feel free to ask!

grbnik · November 2012

Thank you so much! This has been very helpful!

realisticdreams · November 2012

grbnik:
Thank you so much! This has been very helpful!

yw, let me know any updates you get!

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