Any health professionals on here, have you heard of this?

[catty]

my son had chicken pox at 18 months and then again a few months ago at 4.5 the first time was really bad he was dehydrated, fever etc but not bad enough for hospital but still unwell. This time my son spent time in hospital, fever wouldn't reduce and he ended up with Strep A. The doctors felt this was unusual and today (8 weeks after) he had an immunology appointment at hospital.
We seen a lovely and very thorough doctor who checked him over and took ALOT of information.
After our discussion she said IL just tell you what I think its looking like an autoimmune disorder. She then backtracked a little and said but we need to wait for the results definitely but regardless of results I'd like to see him again.
She decided this upon the following - Large Head
-Extremely clumsy
- has a speech delay
And then the obvious that he has had chicken pox twice and steep A. He also has sensitive skin and at times asthmatic symptoms.

I have looked all over Google but I cannot find anything where head size and speech delay could relate to this disorder? Do you think she is thinking about a syndrome possibly.

I know I should just wait results but in very obsessive. He got alot of bloods taken too. I just want a vague idea hate going into things blind.

Thank you

 

[_Meep_]

I'm not a medical professional, but I had a quick Google myself and found a couple of pages you may like to have a look at.

https://www.mumsnet.com/Talk/childrens_health/736459-anyone-had-a-child-who-had-chicken-pox-twice - basically just a bunch of people who have had chickenpox more than once, or whose children had it more than once. So it certainly does happen.

https://www.google.co.uk/amp/s/www.cbc.ca/amp/1.2933828 - this is an article claiming a link between chickenpox and group A strep. Supposedly loads of people are carriers of it, and it causes no problem, until it finds its way into an open wound (e.g. a lesion from the pox) - not at all common, but can and does happen.

So you should definitely listen to what the doctors say and trust they'll get it right, but remember in the meantime that there won't definitely be anything wrong and he may well have just had some really shitty luck.

I'm really not sure how having a large head and a speech delay could be a sign of an autoimmune condition - neurodevelopmental, certainly, but autoimmune ...?

Anyway, I am not doctor so obviously can't make any definitive comment, just wanted to throw this stuff out there!

Hope you will update and that it is good news. When do you get the results?

 

[catty]

Hey thanks, i will look at those links!
i feel sick with worry.

So she said that it's very unlikely to get it twice after the child is 12 months old unless the first time was minor but both of his were bad she says his body should have fought it off

it's the big head things that's scaring me as there seems to be no link anywhere that I can see?
In trying to stay off Google because now in thinking he has signs of muscular dystrophy and in freaking out.

My husband called today and said im worried and the receptionist said the professor that we seen has put a note on our file that noone gives me results she wants to do it and she's not in until Tuesday.

 

[kellyc1987]

Again I'm not a doctor but I've had a little Google, the only thing that i can see that fits with auto immune, large head and speech delay is Auto immune encephalitis but this doesn't seem to mention chicken pox/strep and appears to be quite rare

Link

Obviously as I said I'm not a doctor and it could be a million and one things so although I know how worried you must be try not to worry too much until you've spoken to the doctor and know exactly what's going on

Edit: The more I read about this the less likely it sounds, this seems to be something that comes on suddenly with things such as a sudden deteriation of speech & cognitive skills.

 

[catty]

Again I'm not a doctor but I've had a little Google, the only thing that i can see that fits with auto immune, large head and speech delay is Auto immune encephalitis but this doesn't seem to mention chicken pox/strep and appears to be quite rare

Link

Obviously as I said I'm not a doctor and it could be a million and one things so although I know how worried you must be try not to worry too much until you've spoken to the doctor and know exactly what's going on

Hey. Thanks for taking the time to look. I clicked on that but honestly doesn't sound like him at all. The other thing is his head isn't even majorly large 51cm which is still on the chart (never used to be on the chart when he was a baby) but as he's quite small it just sort of looks bigger. I wouldn't look and be like wow his head there must be some problem.


I really want Monday to hurry up in so impatient

 

[kellyc1987]

Hey. Thanks for taking the time to look. I clicked on that but honestly doesn't sound like him at all. The other thing is his head isn't even majorly large 51cm which is still on the chart (never used to be on the chart when he was a baby) but as he's quite small it just sort of looks bigger. I wouldn't look and be like wow his head there must be some problem.


I really want Monday to hurry up in so impatient

I know how stressed you must feel

 

[_Meep_]

I understand totally why you are worried. I am a terrible worrier too, even though 99% of the time I have nothing to worry about, and Google always makes it worse! Most recently I've convinced myself my oldest has cystic fibrosis and my baby has Rett syndrome. I also thought my oldest had mild cerebral palsy for at least the first two years of her life, but she definitely doesn't. I guess my point is that having a symptom or even several symptoms of a condition doesn't mean they have that condition at all. Totally get that you have been given this information by a medical professional though, so of course you're going to be freaking out.

Kids with muscular dystrophy generally have sudden, progressive clumsiness, so if your lad has always been a bit clumsy, then I'd say it's unlikely to be a symptom of that. They also have obvious and marked weakness, difficulty sitting from lying, or standing from sitting, a strange style of walking etc. Large/bulky calf muscles are another sign. Are you seeing any of this in your son? It is usually diagnosed through blood tests (which I know they have done) in conjunction with electrical tests and a muscle biopsy. So if they haven't done either of the latter, I'd imagine they don't think that is a possibility based on his symptoms and history.

With regard to encephalitis as mentioned by a pp, you'd definitely know if it was something like that. My oldest woke up one day a couple of months ago and was slurring her words/muddling words/forgetting the right words for things. I was terrified and rushed her to the doctor and they referred her for a neurological paediatric work up, which found absolutely nothing wrong. Within a few days, she was back to her usual self, though with an even larger vocabulary than before. Turns out she was just having a language explosion and had also been ill and was really overtired. I later found out at her follow-up appointment that based on how she was presenting, they had been checking for encephalitis. I believe symptoms are usually sudden and severe and completely change a person from the one you knew previously. In other words, it's really obvious something is wrong.

I looked on the WHO head circumference chart for boys and 51 cm at approximately 4.5 years is only just above the 50th centile? Maybe it's large in proportion to his body, but I know LOADS of little lollipop kids who look like that?

Anyway, sorry for rambling on. I hope you get answers soon. Did they indicate that the results were in already? And the doctor has asked to deliver them personally?

 

[catty]

Thank you Meep, I really appreciate it! I know it's horrible to think things are wrong with your child but it's reassuring that's it's not just me!
I tried to speak to my mum about it but her reaction was 'im just wanting something to be wrong with that kid'

IL give you a very quick back story. When Lucas was 18 months he tip toe walked and was in pain so after months of A&E and GP visits we seen an orthopedic doctor who said he had perthes disease (a problem with his hip) anyway by the time he was 3 the doctor said he didn't think he had it anymore and maybe never did and discharged it.

So he tip toe walks (sometimes)
Walks a bit funny
Can't peddle a bike
Struggles to climb eg. On the climbing frame
He's also not achieving what the nursery expect him to for his age at gross motor skills

So these are what is pushing to to crazily assume MD.
I think for some reason in almost making myself believe it's that because anything else would be good news.

 

[_Meep_]

That seems like such an insensitive thing for someone to say! Though I suspect my family probably think the same thing about me.

The thing is, as a mum you often know when something isn't right. The only problem with that is that as a worrier, you automatically assume the worst! I can guarantee that I would be doing exactly the same thing if I were in your position!

It's far more likely to be something less severe though, perhaps hypermobility or dyspraxia? My first guess would have been dyspraxia, based on what you have said.

 

[catty]

Still waiting on results - TORTURE!!
I think I know what she was testing for is called common variable immunodeficiency(CVID) and every part of it adds up to what she was saying to me. One of the parts says 90% have a broad head. So yeh im sure that's what she's testing for. I hate waiting eugh

 

[_Meep_]

Will you be able to get the results today since it is Tuesday? Can you ring up for them?

 

[catty]

I got the results.... All in normal range and seems to be immune to chicken pox. Honestly so happy felt like celebrating. In glad she's been so thorough can now rule that out and get it out of my head now.
So pleased

 

[_Meep_]

Hooray! That's great. I'm so glad he's ok and the horrible waiting is over. Do celebrate! Buy a nice cake and let him have a massive piece.

Where do you go from here now, out of interest? Are you concerned about the clumsiness or is it just a case of accepting that this is just how he is?

 

[catty]

She has made an appointment to see us in 3 months and will go over the other test results that aren't back yet. She said they are not of massive importance as she can see from the ones she has that it's nothing major. She said she will go over clumsiness and speech aswell but because the results were good she doesn't think it's anything much.
Feeling really happy about it as I'd pretty much decided he had something bad. Crazy how if a doctor says something to you, you can believe it just like that

 

[_Meep_]

It's the best feeling ever. I had my oldest checked for a rare eye cancer when she was just a few weeks old and kept having a white reflection in photos. Not sure I've ever been sooo relieved in my life as when the guy said her retinas were completely fine lol.

Enjoy it. Totally get why you have been scared - but hey, it's all fine!! Hurrah!