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.

Oh OP, this sounds awful.

I’m sorry I have no good advice for you, I’ve never had to deal with this but hope more knowledgeable folks are around. The paediatrician sounds like the best place to start. Is pulling her out of nursery an option until her health improves? It sounds like her immune system is low and she’s not able to fight off these infections as well as other kids can. The iron supplements are a good idea as well, keep up with those.

Really hope things improve for her soon!

Not that the tests are that accurate and you'd have to go to a 'lyme literate' doctor but you should test for lymes.

Just a thought, have you tried Echinacea tablets? My eldest was constantly catching colds and coughs last year but they really helped to boost her immune system. Not a single sniffle this winter! Perhaps some good multivitamins too. Does she eat well?

Thank you for your message.
She is in full time school now. Started reception in September. So can't keep her off as she would currently never go back. Plus it seems to be a really good distraction for her.

I often have to go to school to check her temp and give her Calpol. (It lives in my handbag) The school are really starting to get to know me. My teens avoid her when they are sick and I'm keeping her away from anyone that is or has been ill.

She takes multivits daily and drinks at least a litre of water a day too.

Is there a family history of Ehlers Danos Syndrome? Did she ever go ‘absent’ even for a second or two?

Unfortunately her eating is problematic. She doesn't like eating meals as it hurts her tummy, she would rather snack little and often, she seems to have found foods that are less likely to hurt her so she sticks to them. She doesn't really eat meat but she does eat a lot of carrots, peas and sweetcorn, she favours toast, yogurts, cheese, beans, spaghetti and belvitas, cucumbers apples etc she doesn't have much sugar and only drinks water.

She turned down a lollipop today because she had a chocolate balls corner yogurt and told me the Lolly would be too much sugar so she will have it tomorrow instead.

@KTyoupigeon what do you mean by 'absent

My 30 year old sister has just been diagnosed with EDS and hypermobility but I've never connected the two as her symptoms have always been different. I will ask her for a more detailed description tho. Thank you.

I had this with ds. We were constantly in A&E with all the symptoms you are describing plus more. Dd who is 2 years younger was never sick. Ds was finally diagnosed with mitochondrial disease at age 11. This was diagnosed through saliva genetic testing. We went through hell and back during puberty, but he is now 18 and doing much better.

Here are some websites regarding mitochondrial disease: www.mitoaction.org/ and www.umdf.org/ Both websites have information for providers to diagnose. The websites are US based (as I am in the USA) but there are mitochondrial disease specialists in the UK. Once upon a time, mitochondrial disease was only diagnosed in extreme cases where the infant rarely made it into teenage hood. Now they are able to diagnose AND TREAT more moderate cases like my ds.

@Darnsquirrels

I will go and Google lymes as I don't know what that is. Thank you.

Cross posts...EDS is mitochondrially based and one of my ds' symptoms is poorly developed tendons and muscles. He is hyper flexible although not the extent of EDS.

PS. So sorry you are going through this. I truly understand how frantic you must be. I was an American in London without any family support trying to navigate the NHS with all of the above symptoms. It was awful. And the worst part was everyone trying to either blame me or suggest that I was exaggerating ds' symptoms. Getting a diagnosis was such a relief.

@SofiaAmes

I will do some research. Thank you. At this point I'm willing to scream and shout till someone at the drs listens to me.

@KTyoupigeon
Its just occurred to me when she was a new born the health visitor referred her for a scan on her hips as she noticed one of her legs was 'dropping' scan showed no results and she was discharged. At two when she was tired she would simply fall to the floor and was unable to weight bare. Trip to a&e and xrays later showed no results so was again discharged. However she does say to me after walking for two minutes or a busy day at school that her legs hurt. And she's not as active at home anymore. She used to be a tornado but now chooses to sit ALL the time. I'm wondering if there's a connection as I have put it down to her being tired and ill a lot.

@SofiaAmes

I'm so sorry to hear you had a really tough time. Must have been so hard on you.

"Is there a family history of Ehlers Danos Syndrome?" I was thinking along same lines. My dd has eds and this could have been me writing 14 years ago!

"She doesn't like eating meals as it hurts her tummy" that would also tie in with eds.

My dd hates chocolate, I always thought it weird what kid doesn't like chocolate? Turns out there's something (can never remember the bloody name of the thing) that irritates people with eds.

She also hates chips and potatoes generally and isn't keen on other deep fried food either. Again apparently an irritant for some eds sufferers.

"My 30 year old sister has just been diagnosed with EDS and hypermobility" and it's genetic too. I'm certain my sister and father have it (though both undx both have had numerous injuries BUT no breaks and "clicky" joints etc)

Have a look on this site

www.ehlers-danlos.org

People generally think eds is a joint issue but that's just the main visible symptom. ALL the muscular and mucous tissue is affected.

The reason they're more prone to colds, sore throats etc is because the tissue breaks down so easily which makes it easier for infection to get in especially when they're little so eg another 4 year old scratches their ear and it's fine cos the "skin" the tissue is "tougher" in people with eds it breaks more easily and that means a wound for germs to get in - and it doesn't have to bleed for that to be the case, a child with eds swallows a "scratchy" food slightly too quickly, throat membranes broken down, infection gets in next thing you're dealing with yet another sore throat.

My dd has ended up in hospital twice due to membrane breakdown issues.

The eating/tummy issues - the guy is an elastic membrane basically the stretching of the membrane is part of the mechanism that tells the brain they're full, but also the distension presses on other organs causing discomfort BUT people with eds often have a higher metabolism too so they need more calories. My dd is over 6' at almost 18 still very much growing (Her dad and I both short arses at 5'2" and 5'5") and very slim - size 8 - 10 and until very recently a definite size 8 yet she eats constantly.

As a baby was she born with a lazy eye? Or gets a "droopy" eye when tired? Reluctant to crawl or walk or both?

What do her fingers and toes look like? Are they quite long and spidery? Wider "hand span" that most?

I and pps could of course be wrong but it might be worth considering.

@Haribeau what the fuck? Are you high? Do you have a reason for being so nasty?

Don't engage...just report to Mumsnet.

Ds would complain about having to walk as a child. He was diagnosed with a lazy eye at 2 or 3 and again for both eyes when he started to read. (it caused delays in reading proficiency...he was able to read, he just was exhausted doing so). Ds would fall asleep eating as a toddler as he didn't have the energy to digest and stay sitting up and awake at the same time.

Even now at 18, when he's much better because he's done with puberty and growing, Ds got a sore throat a few weeks ago and ended up in the ER because his throat was so inflamed and swollen that he couldn't breathe. Dd missed a day of school with the same sore throat.

PS. Accusations of Munchausen's By Proxy are very common with the parents of children with mitochondrial disease.

Ds was like this at that age . He does have a lot of EDS symptoms but a genetics doctor has suggests we wait to see how things develop. He’s 12 now and much much better although still hyper mobile etc. The immunity issues though are greatly improved.

Also @Haribeau - what?

One of my daughters was similar at 4. Always ill, very little energy, lots of sore throats and coughs but also constant stomach discomfort. She tested negative for coeliac disease.

Two things made a HUGE difference. First we had her tonsils removed. She went from ill all the time to not one throat infection, cough or fever in a year. It was transformational. But the stomach issues continued.

Despite the negative coeliac screen we took her off gluten. Again it was transformational. Her digestion improved, the pain went away, she grew, her hair grew and went from thin to thick and glossy, she stopped having constant mouth ulcers.

She is now the picture of health and has been for some years.

I'm sorry to hear that your DD has been so unwell. When my DD started nursery she was ill for a year but then it stopped. 16 months of this sort of illness is a long time. It sounds to me like her immune system is low due to all the illness (and antibiotics?) but that there's something underlying.

I would give her a good multivitamin and also some probiotics each day and get some good bacteria into her tummy. Does she like yogurt? Would she have the likes of activia or yakult? You can also buy big tubs of different flavoured probiotic yogurt.

In terms of whatever else is going on I would start keeping a diary and also make any historical notes. When you come across different types of illnesses/conditions (eg as posters above have suggested) Google them and pick out anything that relates to what your daughter experiences and make a note. You need to create a bible of information so that as and when she has an appointment anywhere 1) doctors can immediately access information required and 2) so they can see how much is going on. I also suggest videoing anything that concerns you - it's the fastest way for medical professionals to see what you are saying when your child doesn't demonstrate it there and then.

I'm also wondering if she has an underlying water infection. DD earlier this week had a temperature of 40.3,.which would only be brought down with calpol and nurofen given simultaneously. She was also having convulsions and separately was shaking from cold and had blue lips. It was horrible to experience and every time the medicine wore off it happened again. The doctor said shaking and/or convulsions are typical of a water infection. I couldn't get a sample out of her but her wee was really dark (despite drinking loads) and it smelt a bit too. Antibiotics has fixed her. Can you get a sample tested - even just to rule it out?

In terms of school, try to remember it's not compulsory until age 5. I understand your worries and would feel the same but in your shoes I would certainly keep her home with a fever and when she is very unwell. Whilst I am not a parent who keeps their child home for sniffles and minor things (my 7yo would vouch for me) I am of the old school mindset that genuine illness should be spent at home in bed and that convalescence is just as important but this idea is not so compatible with modern day schooling of course. Some people do need more rest than others to get over things. I am a repeat sufferer of bronchitis. Prior to children it took me 2 weeks to get over, now it takes me 8. The point being that I need a lot of rest to get over things but that I most definitely don't get it.

I hope she's better soon and I hope you get to the bottom of it all. Keep posting, MN is at its best for things like this.

@Haribeau

Thank you for your unhelpful comment.

I would like to point out that in 15 (nearly 16)years being a mother I have never once ever needed to ask for help the way I have now.

I used to work with children and having 3 of my own I really have seen it all.

My eldest had meningitis at 3 months old and despite being told she wouldn't survive after 17 days in a comma she pulled through.

My 13 year old has a genetic condition (I wont go into details) that mean she is in constant pain and under 6 separate specialists at a hospital.

I don't google symptoms, I don't take my kids to drs unless needed and I have never ever made any thing seen worse than it is.

The fact it's been 16 months and I'm only just asking a forum for help in 16 years shows my desperation on finding an answer not attention seeking.

I hope that you never feel the desperation I currently feel and I hope that should you ever need to, you get support and help not negative comments such as the one you made yourself.
Blessed be.

EDS wAs my thought too!!! 2/3 of my kids have EDS and the other Hypermobility Syndrome.
What can I say??? I'm the mum who keeps on giving....😳.
I was diagnosed with EDS at the same time as DS who was 3 at the time.

Has she had a coeliac test?