Recurrent unexplained fevers

[BT2016]

Hi, my daughter is 1 year and 1 month old. Ever since she was 5 months old, she has had unexplained fevers of up to 41 degrees every 3 weeks to the day. We can predict when she is going to be ill and has now been ill 13 times in 7 months. When ill she is lethargic, skin is all mottled and she gets purple lips. She vomits too. Have taken her to the GP and out of hours countless times to be told it is a virus. Eventhough she gets checked over and they can't find any symptoms such as sore throat or ears etc-no other symptoms whatsoever. Had an appointment with the paediatrician who told me she is normal eventhough she has dropped from 91-95th centile to 70th centile, he thinks her weight and length are 'correcting' themselves (she is long eventhough my husband and I are short) I suspect she has periodic fever syndrome but paediatrician said she doesn't fit the criteria because he doesn't believe she is failing to thrive. She doesn't eat for those days she is ill, takes her almost a week to fully recover and get back to normal. Last time once her temp returned to normal it dropped to 35 degrees. She felt ice cold and NHS website says below 35 and it's hypothermia? Paediatrician also said that was normal....She seems to be getting ill again now, bang on schedule. I am fed up for her, she needs a break, we only get 2 weeks of a healthy happy child at a time (that's if she doesn't have a cold in between these episodes). Hate seeing her so unwell all the time. Should I be pushing more or is she normal? It doesn't feel like it-yet the GPs and paediatrician are making me feel like some silly clueless mum. This is my second child by the way-both stay at home, no nursery etc and eldest is never ill/picks up anything from my other daughter who (if I were to believe the drs) keeps picking up viruses every 3 weeks exactly....Please help with advice, should I be doing more for her?

[BT2016]

Also we go through half a bottle of calpol every 3 weeks-not to get her fever down (as we can never get it down below 39 even with calpol those first few days) but because she is so unwell that she needs it just to be a bit more comfortable, surely we can't go on like this- surely this isn't good for her?

[Allout]

Has she had blood tests done while having these flares of fevers?
My dd was diagnosed with sjia 3 years ago. It took nearly 3 months for a diagnosis. During that time her temp spiked constantly and the inflammation levels in her blood rocketed. She had tremendous joint pain but was 11 so able to tell me whereas your dd is a baby. Below are some of the symptoms. ...

Although SJIA can occur any time during childhood, it usually starts before age five—most commonly at about 2 years of age. In almost every case, a high, recurring fever, often with a rash, is one of the first signs of SJIA. The fever usually follows a pattern in which a child’s temperature reaches 103 degrees or higher, generally in the evening, and then drops within a few hours.

Although a daily, spiking fever, typically in the evening, is one of the criteria for diagnosing SJIA, studies have shown that the pattern can vary. Sometimes the fever occurs in the morning or twice a day; occasionally, it may continue throughout the day. Over time, though, almost all children with untreated SJIA develop the typical pattern of daily fever that returns to normal.

Fevers are often accompanied by a flat, pale, pink rash that frequently appears on the child’s trunk, arms, or legs, although it can move from one part of the body to other parts.The rash may be itchy, but usually isn’t. It tends to last a few minutes to a few hours and is associated with fever spikes. Tracking the symptoms of SJIA and sharing them with doctors can help them make an accurate SJIA diagnosis.

[Pagwatch]

I have no idea if this is the same but I had this, alongside breathing difficulties which were diagnosed as asthma, with my DD.
We lived through 8 fucking years of it.
Eventually I took her to a consultant who specialised in allergies.
She was allergic to dust, wool, birch pollen, milk, gluten, nuts and some other thing.
Her high temp and breathing problems were allergies.
I removed all the allergens and they stopped immediately. From being in the hospital 6 to 8 times a year she went to zero and in two years since the allergies were removed, she has never been back.

[Allout]

My dd was treated with iv steroids to stop the flare of the disease and then oral steroids. She now has to have an injection everyday for the rest of her life to stabilise her condition and stop the flares.

[123bananas]

Could she have a recurrent uti?

Possible immune system disorder relating to allergens also a possibility like Pagwatch says. DH has lots of allergies and various health issues he has had since a child. He is now being seen by immunologists as they think it is all related to his immune system.

[BT2016]

Thanks for the replies everyone, I'm new here so don't really know how to do this or what to expect! Nope, no rashes She did a urine sample one of the last times, GP said it was fine. Paediatrician looked on system and said it was contaminated. So now have to do a urine sample every time she has fevers now to rule it out-but with a 13 month old, they want a clean catch which is pretty impossible. Her flare ups always happen on a Friday so by the Monday her temp has calmed down-should I be taking a urine sample to out of hours instead? They really don't want to do a blood test-said they don't see any reason and don't like doing them on babies?! They keep telling me she is fine and normal? Paediatrician was extra dismissive, even weighed her approximately with all her clothes on etc in my arms. Didn't even check her over or look at her. They just seem to care that she doesn't have a 'serious illness' such as cancer etc and not that she is actually suffering. Didn't even seem concerned abour the fact that we can predict these episodes to the day.

[BT2016]

About her fever, during the first 3 days, her temp is constant, mainly above 39, in the evening it goes up to 40+, occasionally 41 which can be scary,her lips go purple and she vomits. On day 4 it usually is between 38 and 39 and day 5 she usually wakes up completely normal temperature wise but takes her a day or two to get back to normal

[BT2016]

In between these episodes she is completely normal. She has had a cold this month in between episodes so has literally had only a couple of days of being normal and eating normally. It is miserable seeing her like this

[PinkSwimGoggles]

with this pattern is there anything you can think of that also has a similar pattern?
like taking the dog to a grooming salon? gowing to the hairdresser? long drive? visiting grandparents?
must be really worrying, hope you get to the bottom soon and your lovely dd gets better.

[BT2016]

We keep racking our brains but we can't think of anything. Our week in general is the same every week. We see grandparents every week, no pets, diet is pretty much same-nothing we eat every 3 weeks. We kept thinking it could be an intolerance or allergy but nothing of any significance that follows that same pattern

[Tedsterteddington]

My son is 3.5 and has been diagnosed with an undifferentiated periodic fever syndrome. You need to see a rheumatologist who specializes in these diseases as they are VERY rare but what you describe is very familiar! Most doctors I have encountered hve never heard of them. I have had to fight every step of the way to get my son's diagnosis. Google the autoinflammatory alliance, there is so much information on there. I could have written your post 2 years ago and sadly it's taken this long to get any answers or treatment.

[BlackSwan]

Whatever the explanation is - until you have an answer you're satisfied with, keep taking her to the doctor. If you get the brush off, see someone else. If you have medical insurance make use of it. Good luck, you will find answers.

[Tedsterteddington]

Totally agree with BlackSwan, keep going back to the doctor. Keep a diary of episodes, temperatures and symptoms. Whatever the cause you need to trust your motherly instinct!

[BT2016]

Thanks for the replies, yes you are right, I should keep going. I have seen 3 GPs so far but still could see others. We don't have private medical insurance, should I be getting some or should I keep going through NHS or am I wasting my time? Are rheumatologists available on NHS or only privately? I don't trust the drs, and some family just seem to accept the drs answers saying oh I'm so glad she is fine and nothing is wrong... or ah she should grow out of it soon. When we are in no better position than before. It makes me feel stupid. Thank you for the website recommendation, have seen this one before and PFAPA sounds exactly like her symptoms and duration etc. Going to get her weighed properly and measured-hasnt been measured for a long time yet the paediatrician said her height and weight are correcting themselves when they have only seen her weight dropping off the centile-for all they know her height is still high on the centile.

[BT2016]

Will keep persevering with the urine samples too, just so that they can rule uti out. Eventhough the last sample was contaminated, it was only contaminated with normal growth, it didn't have any signs whatsoever of a uti which would have shown up? Am I right in thinking this?

[BT2016]

I have a diary charting her fevers etc ever since the beginning, symptoms leading up, anything of interest. Drs literally glance at it and say it's useful but don't even look at it. Will keep charting it.

[OnTheUp13]

I'm wanting to follow this as we have very similar symptoms with my DD and she also has rigour fits along side if

[BT2016]

Tedsterteddington- how did you get someone to listen to you? How did you get your diagnosis?

[zgaze]

I had exactly this with my daughter - every three weeks like clockwork but only through the autumn / winter / early spring, she then would have a long run between April - September being well. From the age of about 1.5 right up until last year when she was 3 / 4. I could see it coming - weirdly she'd eat & drink loads for a week then she'd stop eating, get lethargic and just generally unwell seeming then her temp would rocket over 40 and hover around there for a good three or four days. Then it'd come down and she'd be on the mend. It meant a week off nursery each time.

Anyway to cut a long story short it turned out to be recurrent tonsillitis. They discussed taking them it but said it was worth waiting until she was 5 as many children grow up of it by then. Also once she started school it's easier to justify the op in terms of time off. She's now almost 5 and touch wood hasn't had a single episode this year so fingers crossed we are through it now.

One interesting thing is that she is very tiny - one of the hospital drs we saw said when a child is ill so regularly all their body's energy goes into fighting the infection and not into growing. She was on the 0.2 centile all the way through this but since it seems to have cleared up she's actually had a little growth spurt and doesn't seem quite so small against her peers!

[zgaze]

Argh lots of typos, I'm typing on my phone. Hopefully you can decode what I've written!

[BT2016]

Zgaze thanks for the reply-that is interesting and also gives me hope that she may grow out of it. I am concerned it is tonsillitis or something to do with her throat, eventhough drs have said when they have looked that her throat looks fine, I do doubt whether they have looked properly or whether because she is screaming at them when they look they just don't bother. Especially considering myself and my father had our tonsils removed as children due to recurrent illness. I wonder if it is hereditary. My DD also stuffs her face with food in the lead up and then goes off her food completely.

[beautifulgirls]

Where are you located? I would push for a specialist referral to one of the children's hospitals if you can. They have a variety of paediatric specialities available and even if you don't see the right people initially they can internally refer on if they need to.

I feel for you - my 10yr old DD is having a lot of recurrent problems since September and I have really had to "fight" with my GP to get any sort of investigations. As things stand we don't know what is causing her issues (though possibly JIA?) and I feel like the GP is not interested. I am waiting on a referral to a children's hospital now and hope they can look into this properly for her and give us some answers soon.

[BT2016]

We are in Bristol so there is a children's hospital- we had already been reluctantly referred to a paediatrician from the gp- would we still still be able to get referred to a paedatrician at the hospital eventhough we have already seen one and he dismissed it just like the GP did?

[BT2016]

Beautifulgirls- I hope you get some answers soon. Would any GP agree to refer me to a paedatrician at the hospital (just looked, they have paedatric rheumatology at the children's hospital) when he doesn't agree there is anything wrong with DD and a paedatrician (separate to the hospital) agrees with him?

[Tedsterteddington]

Sorry I've had a busy day.
BT2016 I kept a record of all episodes and symptoms, printed off a one page calendar and used a highlighter to mark all my son's fevers, really shows the frequency very well. Our local paediatrician was very rude to me and said that she thought my son was just having viruses, I told her that I disagreed and pleaded for a referral to an immunologist. We were referred but she said she didn't expect there to be anything found - how wrong she was. The immunologist ran in depth blood tests and these revealed inflammation so she transferred us to the periodic fever clinic at QMC nottingham where we are seen by a rheumatologist and the immunologist. They have been amazing, my son was admitted for observations and tests, they also ran genetic tests. It has taken a good two years but finally he has been diagnosed and started on treatment. I really feel like I have had to fight to get to this point! I took my son to the same GP every time he was unwell so that she could back up my notes. My son has been missing about half his time at nursery and has gradually become generally more tired and weak, this really has impacted his life greatly so please don't underestimate what you are going through. Any more questions please just ask