Desperate plea for help. 4yr old constantly Ill

[EmmaT0305]

I am in desperate need of help please.

I have 3 kids. 15, 14 and 4. All girls. I've seen it all. Been through everything from the common cold to meningitis.

But my 4yr little girl is constantly sick. I'm loosing my mind with worry.

When she started nursery 16 months ago she got a cold and every week since she has been ill with something. Now I understand children get ill, some more than others. But I promise I'm not overreacting.

She has had tonsilities 6 times, countless unexplained viral infections, colds, flu, ear infections, chest infections, you name it she's had it.

But recently her health has taken a nose dive and I don't know what to do.

Her symptoms are as follows,
Fever (102 +) Which sometimes leads to convulsions unless controlled fast. Highest temp was 105.7
Headaches
Loss of appetite
Leg pain
Itchy skin
Pins and needles in feet
Mood swings
Weight loss (2lbs in 3 months)
Abdominal pain
Irritability
Hips click and hurt
Restless sleep
Extreme tiredness

She has had blood tests and they showed she was anemic she had 3 months of iron

She is also asthmatic and on blue and brown inhalers and tablets to control her asthma

Blood tests have ruled out gluten and dairy allergy.

I am still nursing she's self weaning so nurses for 5 minutes in the morning as she wakes up and when she's really ill she will nurse for comfort
Sometimes bf has made the difference between needing an ambulance or not.
She has had more rides in an ambulance than my other two kids combined.

The Drs have referred her to a peadatrition but they cancelled one appiontment and after a fight I got another referall but they down graded from urgent to routine and although I call daily it's been 3 weeks since latest referal and I'm still waiting.

Please please please if anyone has any ideas or advice I would be so grateful. I am so desperate. I just want her well. Thank you.

Following on from booboostwo post, you’ll see zebra mentioned a lot with EDS - ‘when you hear the sound of hooves, think horses, not zebras’. The rare diseases and zebra are out there though. Good luck in getting to the bottom of this OP.

www.aboutkidshealth.ca/article?contentid=921&language=English

PFAPA syndrome? Rheumatology condition characterised by recurrent fevers, swollen glands, sore throats and enlarged tonsils. Can go on for years but usually self-resolves in teenage children. No test but a single dose of steroids at the onset of symptoms can help. Or a tonsillectomy.

OP so sorry that you're having to fight so hard. A PP mentioned pernicious anaemia. This causes a raft of different serious symptoms and can be very difficult to find a doctor who really understands. From your list, pins and needles, joint pain, gut issues and extreme fatigue. Also breathlessness, clumsiness, nerve damage and low immune system. take a look at pernicious-anaemia-society.org (do you have any symptoms yourself? If mother's levels are low then bf baby can't get what they need)

Do not give OTC supplements prior to getting blood tests - these will raise B12 in the blood so level will seem to be in range but it will just be peed out. Has to be absorbed by the gut.

Good luck. x

Thank you all for your messages.
I am starting to research all ideas posted.

I won't be altering her vitamin intake till we've seen a peadatrition as she's on vitamins already and I don't want to overdose her by giving her extra.

She is very 'clumsy' and trips over a lot outside. Slightest change in pavement and she trips over. She comes home from school with bumped notes all the time. When she does fall over she screams with pain and takes her hours to recover especially if she's landed on her knees. :(

I have spoken to my sister and she said she experiences all the same symptoms as my daughter she also experiences other symptoms too. She said hers started as a child too. Tho she's only just been diagnosed they put it down to fibromyalgia for years. Wasn't untill she pushed for a geneticist that they diagnosed her with EDS.

I have managed to get the name of the hospital and Dr she's been referred too. I've found out she's on a waiting list but the hospital receptionist gave me the drs personal receptionist number so I will be calling first thing in the morning and pushing for an appiontment.

@graphista

DD was diagnosed with EDS nearly five years ago (after nearly a year of unexplained but hellish poor health). She self manages incredibly well (she's 20) and I know that many have the condition to a far greater extent that she does, but it still sucks .

She's always had a droopy eye! Especially noticeable in photos / when knackered. You're post is the first time I've linked this to her EDS so thanks for the super detailed info. A really helpful post.

@EmmaT0305

I do hope that you manage to pull the appointment forward. Sending loads of good wishes

Fingers crossed you get an appointment soon, a diagnosis and help!

Op & ifancyagreencard you're welcome.

I'm still very much learning myself, though actually also a bit angry as there were clear signs/symptoms that should AT LEAST have alerted that something wasn't quite right.

Heavy birthweight but skinny, long baby even though mum & dad shorties.
Long thin limbs, fingers & toes with a "knobbly" appearance of joints which is characteristic of eds
Very obvious lazy eye
Skin far more wrinkly than most babies
Wasn't producing an enzyme and needed treatment to stimulate production
Jaundiced
High metabolism was noted

All link to eds.

I'm not convinced it IS a zebra condition I think it's under dx.

I'm pretty sure my sister, her eldest & youngest, my bros eldest, and certain aunts & uncles are undx sufferers. Bro is keeping an eye, sis we're Nc and she never listened to me anyway.

My daughter is the exact same she’s 3. Did you get any answers xx

The NHS appointments system is very hit and miss. Clerical errors and lost paperwork, computer errors, all very common.
Write to PALS. If your appointment letter has a name or department secretary contact write to them too. You have to be proactive.
I hope you get the appointment sorted.

Sorry, I meant to say that phoning often gets you nowhere. You are far better writing.

The OP’s post is more than 3 years old so you’d hope they got the appointment sorted out by now!