Our journey with our daughter’s Glandular Fever
Today marks a week since with our 13 year old daughter was discharged from hospital with Glandular Fever. We spent 8 days there and it was the scariest time of my parenting journey so far.
She was never in a critical state but there were moments when her condition was exptremely poor and nothing seemed to be helping her. Watching a child suffer and not being able to do anything to take away the pain is undoubtedly one of the worse things a parent has to endure.
Rebecca had an extremly severe case of Glandular Fever, her tonsils at one stage were so large they were touching one another, her throat and tonsils were covered in patches of white pus, she had regular temperature spikes of up to 40 degrees C for two weeks, the glands in her neck had swollen so large that her neck was as wide as her jaw bone. Her nose was blocked and because her tonsils took up so much space in her throat breathing became difficult. She broke out in allergic rashes and her ears hurt from the pressure from her glands.
It all started on the 17th October, I got a call to come and collect her from school as she wasn’t feeling well. She had had her first year vaccines that morning and I attributed her unwellness to that. After a week I called the vaccines office and said it could take up to ten days for those symptoms to clear up.
Sore throat, enlarged tonsils and glands and fevers…
After ten days of generally feeling unwell with nausea, headaches and dizziness, Rebecca suddenly developed a severly sore throat in the middle of the night. Her tonsils ballooned and became covered in white patches and the glands in her neck became enlarged.
I took her to the doctor who immediately prescribed antibiotics. On first impressions, it appeared that she had contracted a strep throat.
Unfortunately however, we didn’t know she had Glandular Fever and because it is a virus, antibiotics do not work, in fact they can cause complications like an allergic reaction – which is what happened. The following day, Rebecca came up with a strange rash all over her body known as urticaria. Thinking it may be an allergy to penicillin, the doctor prescribed a different type of antibiotic. When she started vomitting and the antibiotics had no effect the following day, I brought her to the hospital where one of the doctors took one look at her and said she had Glandular Fever.
We were told to stop the antibiotics and were prescribed paracetamol, fluids and gargling with salt water to help clear the pus but there was little else we could do except wait for the virus to play its course. They took a swab of her throat however, just to check there was no underlying secondary infection (which there wasn’t).
We came home for two nights but she just got worse and worse, unable to eat and barely drink, she broke out in a nasty red rash all over her body. Her nose started to bleed lightly and that continued on and off all day. It was terrifying watching her deterioration and not knowing where the bottom of the downhill descent was. I took her back to A&E and she was admitted into hospital.
Eight days in hospital
Rebecca was dosed up wth the highest level of pain relief they could give her – she started with paracetamol via IV, then progressed onto difene and then finally morphine but it was still too painful for her to swallow. Because she couldn’t eat or drink she was on an IV drip for her fluid intake, they did a finger pick test after a few days to check her blood sugar levels.
After a day in hospital they sent her for a chest x-ray because there was a slight concern she might be developing pneumonia. Her nose was blocked because of the swelling and so she could only breathe through her mouth but she had a constant flow of mucous from her nose. Thankfully the x-ray was clear.
Everytime her temperature spiked she would break out in the angry red and itchy rash that covered her body. I wiped her down with a paste of baking soda and water which took away the itchiness. They gave her antihistamines in hospital for a while which helped too.
After a week of the illness, the swelling in her glands caused the pain to radiate up into her ears. Everytime she swallowed she would wince and cry out, the only thing that gave her some relief was to hold our cupped hands or a warm heat pad over her ears. She was pale and unresponsive, listless and weak – it was so scary so watch her and feel utterly helpless to do anything about it.
She was given four doses of steroids to help reduce the swelling, although usually a maximum of two doses are recommended for children. After three days of heavy meds she suddenly developed severe cramping in her stomach and there was concern over her spleen having possibly ruptured.
Typically Glandular Fever causes the spleen and liver to become enlarged but in rare cases the spleen can rupture and so a surgeon was urgently called to check whether she needed an emergency operation. Thankfully she didn’t but we were still not sure what was happening.
Nothing would ease her terrible pain, all she wanted was for me to sit behind her on the bed and hold her very firmly around her middle. She was given oxygen to help her breathing, as well as antacids to protect the lining of the stomach as all the meds would cause irritation, and she also was given antispasmodics to help soothe any cramps.
I hated seeing my little girl hooked up to an oxygen mask and two IV’s, one for fluids and pain relief, the other to take bloods, however, she was in a desperate way and needed urgent help.
The pains gradually eased but afterwards she was completely spent. She had two more similar episodes the next day and night but they were less severe and eventually resolved themselves. She was put on a daily dose of antacids after that.
She was sent for another x-ray and also an ultrasound to check her liver and spleen, both of them had become enlarged. They were monitoring her bloods too to make sure the liver and kidney function wasn’t too damaged.
Struggling to eat
Getting her to eat in hospital was a real challenge. After a few days she could manage a glass of milk or a bit of custard and some blueberries for breakfast, a scoop of mash and gravy with a bit of chicken and three of four soft boiled carrot or parsnip sticks for lunch, a slice of bread and a tiny bit of chicken for supper.
However, one night Rebecca woke up around midnight after having come down off a fever, and she was really hungry. By this time she hadn’t been eating properly for a week and I was offering her anything, as long as it was edible. She asked for a chicken sandwich (there was always a supply in the ward kitchen) and jaffa cakes – I was ecstatic! While I gave humble and grateful thanks to the creator of jaffa cakes we had a mini midnight feast inside our curtain cubicle. I told her she could eat the whole packet if she wanted to.
On the whole though, she didn’t like eating anything sweet, in fact it seemed to aggrevate her ears even more, even fruit juice was causing her pain and this could be something to do with sudden and excessive saliva excretion. So she stuck to drinking as much water as she could and eating soft pasta, mash, chicken, soft veg and soups.
When her throat pain finally eased off, the day before we were discharged, she developed thrush on her tongue which then made her tongue sore and painful for her to eat again! After feeling like we could manage at home on a regular course of paracetamol to control her fevers and drops for her thrush as well as antacids to protect her tummy (she had been on paracetamol or ibuprofen for three weeks by now) we were eventually discharged.
Finally home after 8 days
Now she is home and her appetite has returned, I am so relieved as she is so thin! She lost about 5 kg’s in a week, which is more than 10% of her weight. For the first few nights at home I woke up at regular intervals to check her temperature and give her paracetamol and nystatin for the trush. That, combined with feeding her soft foods, felt like we had a baby in the house again.
After taking nystatin drops for the oral thrush, it began to clear up after about five days, and after two weeks her temperature finally returned to normal – that was a real turning point and an enormous relief and caused a mini celebration in our household!
Her nose gradually opened and she could eventually breathe through her nostrils again, breating constantly through her mouth would have dried it out, made the throat more painful and could have been the cause of the thrush.
She is very pale, with dark circles under her eyes and has a new rash on her hands which I will ask the hospital about this afternoon when we go for our one week after discharge check up. She is also very tired and can’t manage a lot of activity or walking too far. She has aches in her hips and lower back, probably from inactivity.
She won’t be able to go back for a full day of school yet and also will not be able to partake in any activity where she’s a risk of falling as her spleen is vulnerable to rupturing. They will take bloods again today just to check her liver, kidneys and spleen.
It is wonderful having our girl home and I am extremely grateful that we have that priviledge, knowing that there are many parents who do not after spending an extended stay in hospital with their children.
Recovery from Glandular Fever is a journey
I have been told that recovery can be slow, my mother took six weeks, my school friend took eleven months… After not knowing much about the illness, I am suddenly hearing stories from people who have had it and how long it took them to get over it. The journey with Glandular Fever is different from one person to the next, the progress and healing happens at a different rate.
Overall, this past week at home has been good and her progress each day has been a lot quicker than I expected.
The severity of the symptoms are also very different from one person to another, you may contract Glandular Fever and not feel anything more than a bit of a sore throat and tiredness. It is highly possible that Fia, my youngest, had it at the same time as she had similar but far less severe symptoms at home during the time Rebecca had it.
It is a contagious illness via transmission of saliva and as a result is sometimes called the ‘kissing disease’, although this may be also because, as the doctors kept telling us, the tonsils were actually ‘kissing’ one another!
Aparently it can be contracted simply from drinking from a cup that has been used by somebody with the illness.
The teen years up to early twenties is the typical age to contract this illness and there have been a number of other cases in our area recently. I have no idea where she picked it up, she may have been brewing it when she received her vaccines and that caused her to have a compromised immune system and that is why she developed such a severe reaction.
Because recovery from Glandualr Fever is not immediate, it’s more like a journey, all we can do now is be patient and allow her to recover at her own pace, to encourage her to be as active as what she is able for, and to feed her up with healthy meals. We have asked for a little bit of homework from school and she’s not too impressed!
I am buying her whatever healthy foods she asks for now, she’s eating blueberries by the bucket load and loving yoghurt as well as butternut soup, chicken in any form and white fish. But I’m also happy to fatten her up with all the jaffa cakes she could possibly eat!
Have you had Glandular fever? (Also known as ‘mono’) What was your experience like?