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?

So sorry to hear that your daughter is still unwell. Have you seen a Rheumatologist yet? A General Paediatrician is unlikely to have enough knowledge, if any, of these conditions. Whereabouts in the UK are you? If you're on Facebook try joining RACC-UK, it's a UK group for periodic fever syndromes, lots of useful advice from others.

I didn't realise this was an older thread.

My first reaction before I'd even finished reading the OP was periodic fever syndrome.

I hope you get some answers soon

Hi all, I realise this is an old post, but hoping someone can help....
My son has been having reoccurring episodes of a fever (40c), cold hands, funny breathing, abdominal pain every three weeks (lasting 3 days) for a very long time now (from a small baby) he's now 2.5yrs. These are so regular we've been putting a note in the calendar when we can expect them.

Since first lockdown in 2020 I've been keeping a record as was always told by Dr it was a virus picked up from other children. But he hasn't seen any other children in lockdown and still having these fevers, etc.

Has anybody been diagnosed with familial Mediterranean fever (FMF)? My husband is Italian and I've read Italians are susceptible. I called the Dr today (again!) And he asked for urine sample. I told him about FMF and he dismissed it saying it was very rare. I am so upset for my son. He has 2 weeks of a happy, healthy little boy then week three goes down hill for three days. My husband and I are at a loss and just want someone to take us seriously.

I've kept a log of his episodes since march 2020. When offered to give list to the Dr (two different drs) they were dismissive.

Please let me know how you got your child diagnosed. Thank you!

JB86 - I’m glad someone has flagged up this recently as I’m going through a very similar thing and would love to know peoples outcomes.

My son (22 months) has been getting fevers every two weeks without fail for 7 months. It has got to the point where we can predict when the next episode is. Obviously during covid this is even more unpleasant as we have had to have 14 covid tests.
I’ve taken him to doctors and called 111 many many times but they keep passing it off as virus’s. Unfortunately it has coincided with starting nursery so that’s how they explain it but surely it can’t be coincidental for 7 months can it??

I’ve kept a log since august 2020.

Would love to know if people finally got a diagnosis.!

@Jen1104 I'm sorry to hear this, my heart goes out to you. Sounds very similar to my son.

Fortunately I've managed to get the drs to refer us to the paediatrician at our local hospital. We have an appointment next month, I'll update you once we get opinion from paed. Keep recording the episodes and persist with the drs. Persistence definitely paid off here, the Dr actually said she didn't know what it could be!!

@JB86 thank you for getting back to me.
Hope you get somewhere with it. Ill definitely persist with the doctor. I think we have enough documented now to make a strong case.

Sending all best wishes for your appointment. Xx

Hi @Jen1104 I hope your little one is doing well. Just a quick update....so my son went to see as paediatrician at hospital and she was very surprised to hear of his reoccurring fevers. Said this definitely wasn't normal (despite gp saying it was!) She took some blood (very traumatic!!) And is testing for lots of different things. Definitely push for a referral if you can. If nothing shows up in this lot of bloods then they want me son in for observations and further tests next time he gets a fever.... Hoping to hear results by Monday. Will keep you posted if we get a diagnosis.
Best of luck. :-)

@JB86
Thanks so much for your message. I’m so glad they acknowledged that it wasn’t normal and are doing tests.
We have now got an appointment date for 15th April!
Funny that you message now - we have just rushed our son into hospital with fever of 41.5. He was inconsolable. As I have a 8 week old who is breastfeeding and for covid reasons my husband had to go in with him - sat on the edge of my seat waiting to hear news. Hopefully they find something that might explain what is going on.

I’ll keep you in the loop! Thanks for the update ❤️

@Jen1104 my gosh! Poor little boy. Thinking of you!! I hope they manage to find something and that he is ok, must be very stressful for you, I was not so long ago in your shoes (I've got 4 month old!). Glad to hear you have an appointment. It's about time something was done for our little ones.... Thinking of you and your family. I hope your little one is ok. Xx

@JB86 how are you and your little one getting on?
My little boy had some bloods done while he was in hospital for a full blood count, immunoglobulins and autoimmune profile. They also did a chest X-ray. Blood count Came back as raised CRP levels which would indicate an infection apparently and low red blood cells suggesting anaemia. He was put on antibiotics and iron medication. X-ray was clear.
7 days later (2 weeks exactly from the start of last episode) fever was back so I don’t think the antibiotics helped.
We are now waiting to go back into doctors today as he has had fever for 6 days now. Checked him on day one and nothing!
Feel like a very pushy mum for getting him checked so regularly but at least they might have more information then for our consultant on 15th April.
Have you had any luck with diagnosis since they ran tests?

I’ll keep you in the loop ❤️

Hi @Jen1104
Sorry to hear the antibiotics didn't work. At least you've tried that and the consultant will see that isnt the answer. It's all very strange. Your poor little boy, I hope the fever goes soon. You are certainly not a pushy parent. You are doing right for your boy. Keep persisting.

My little boy had his regular fever yesterday (four days late) and is perfectly fine today. It's the first time this has happened.

I've been reading into raised glands in the throat which can cause reoccurring fever and tonsils being removed to stop the fevers. It's another possibility?! I'm at my wit's end to be honest.

The results came back for the bloods. All normal FBC, Renal, liver, thyroid function, bone profile CRP 45, ESR 14, Normal blood film and autoimmune screen. The paed called us with the results and said he was so healthy that she didn't want to see him again. Which was a real disappointment to us. She later called back and said she wanted to run more tests and bloods the next time he is poorly and that she was going to speak to a rheumatologist.... Will keep you posted....

I hope you get more out of your appointment than what we did! It's so frustrating! Take care and keep me posted.

I know this is an old post but I wanted to see what was the outcome as I’m going through the same with my 3 year old.

Hello @Mumoftwo367743 I'm so sorry to hear you're going through this. It's awful for both your child and your family. Fortunately we managed to get some tests done at the hospital including bloods and the general consensus was that our son was healthy! We were just expected to 'ride it out'. The bloods and hospital visits caused our son a lot of distress, we therefore decided to leave it for a little and fortunately he did grow out of it around 3.5yrs. The number of days he had the temperature got shorter and the time between each episode got longer, until one day, they just stopped happening! Good luck, I hope you get an answer or it gradually stops. @Jen1104 how did it go with you? Do you have any advice?

Hi everyone, I am the OP. I haven't checked this thread in such a long time. Sorry to hear of all the problems with your children, at the time when it was happening (so many years ago now) I felt alone and that noone else went through the same thing. The only thing you can keep doing is keep pushing and keep advocating for them. Thought I'd give you an update as my daughter is now 6 (7 next week!).

She did get referred to a paediatrician, but like the previous poster, they said she was healthy and didn't see her again. It was frustrating because all they cared about was that she hadn't lost lots of weight (she would make up for it in between episodes with her eating) They wouldn't even do a blood test, said its something they don't like doing on kids so young. She became seriously unwell in hospital when 2 years 4 months, but something that may have nothing to do with the fevers so will spare you any details (ironically she then had to have blood tests every week for 3 months). We thought it was another episode so tried to ride it out, so I would say it is important to keep taking your kids to the dr every time they are ill. As thinking it was one of her episodes masked what was actually wrong with her at first (which is what I was scared of each time she had an episode and drs said it was just a virus). Especially if it goes on for a few days. Don't be overly paranoid but do make sure someone sees them, just so there is some accountability too. I kept records of when she would have fevers but drs didn't seem to care unless they had an actual record of seeing her each time. It was as if they didn't believe me.

After her hospital admission and subsequent surgery she needed she fully recovered. Fever free for a few months but then ended up getting recurrent tonsillitis. 20 bouts of tonsillitis later over 2 years and lots of misery and she had them out. The drs decided this not because she suffered from tonsillitis every month (!!!) but because it caused sleep apnea. It was frustrating and upsetting.

But since having them out, no fevers, no illness apart from colds. I have a fully healthy (finally!) almost 7 year old! She has been fully healthy since she had them out at 5 years old in 2020. Her first 5 years were turbulent and full of ill health but now you wouldn't be able to tell.

Could she have had something underlying with all these fevers all along, I question this a lot. Could it have been her tonsils? Because she would get tonsillitis every single month? It is quite possible. I mean how good of a look can doctors get at the throat when looking in a baby/toddlers mouth?

Sorry I don't have any definitive answers, I just thought it might be useful for you guys to hear our story and how it panned out. It was one of the worst periods of my life not knowing what was wrong with her and I absolutely sympathise with you all and I'm just so sorry I have no proper answers. The best advice I have is just keep advocating for those kids and look after yourselves as it is so tough caring for them. Good luck ❤