Does my child have childhood dementia

[worriedsickmam]

Specifically Sanfillipo syndrome… I do have anxiety/ocd/autism and I can get things stuck in my head and have intrusive thoughts that eat away at me. When my daughter was a baby I was quite poorly and one of the things I worried about was this disease. I am medicated and it works (I’m so much better than I was)
Dd is 2, she’s always had a decent pair of eyebrows on her. Anyway, in the news atm is an article about a little 2 year old girl who has just been diagnosed with this awful disease, I shouldn’t have read it as it’s triggered off these intrusive thoughts. One of the physical signs of it is bushy eyebrows, if you google the facial features I feel my dd resembles the forehead/eye area. I can’t stop worrying about it and I need someone to rationalise this for me and tell me I’m being stupid. She is delayed in her speech but all my children have been.

@worriedsickmam as pp has said if your mind is put at rest about this you will find something else to worry about unless you sort out your underlying anxiety. If you are concerned about her development speak to your GP , San Filippo is rare and is autosomal recessive so if both parents carry the gene every child you have has a 1 in 4 chance of having the condition. A 50% chance of being an unaffected carrier and a 1 in 4 chance of not carrying the gene. It is also regressive so an affected child will start to regress and lose skills. Unfortunately I have seen a few children with it and it has never been their physical appearance that has been the first thing to notice it has been a child who appears to be developing normally in early life and then they stop gaining skills and go backwards

Well that’s abit of a cruel comment isn’t it, I hope kicking someone when they’re down has made you feel better.

I will have a look at systemic therapy you mention. I think I’ve done cbt about 5 times now, it really is wasted on me, but I do remember reading that apparently it doesn’t work on neurodivergent people, so that may be why?

I just want that voice in my head to shut the fuck up, it’s easy for dh to laugh but his brain isn’t like mine so he just doesn’t understand how distressing it can be when you’re absolutely convinced about something

It’s really helpful to hear from someone like you with real life experience of this disease. And I’m sorry you must think I’m ridiculous. I’m going to try and throw it away and not let it take over anymore than it already has.

I know it's really horrible and it's not ridiculous at all. OCD is an illness and what's super horrible about it is that you have enough rational thought to know it's all incredibly unlikely and have to also battle the horrible thought

The joys of autism OP!!! This disease isn't in my disease and disaster database and I'd never heard of it until today when it appeared on Facebook. I reckon if I've not got it lodged in my brain it must be vanishingly rare. You also know this is one of your triggers.

It helps me when people laugh at me for my ridiculousness. So I'll laugh at you and you can laugh at me for obsessing over the colour of my DS's toes (he's 21 and we both had chilblains a few months ago).

You can't get medical advice here. But if you are just looking for reassurance, your DDs brows and forehead look like mine did when I was little. I'm a very healthy and cognitively able 40yo.

What do you want the dr to take you seriously about?

1.That your dd has a very rare disease that you happened to read about online.

or

2.That you are finding it hard to deal with your intrusive thoughts and anxiety and need some help.

I think any doctor worth their salt will recognise that 1 is a symptom of your illness and that yes, they do need to take 2 seriously.

Disease and disaster database 🤣 oh my god, I’m sorry you also have this issue but also feeling slightly less alone and stupid !

My doctors must be sick of me, last time it was me trying to take myself to the hospital because I was convinced I had liver disease.

From the sound of it there are far more serious symptoms that would be signifiers before you look at the eyebrows (and your dd's eyebrows are beautiful BTW!). Delayed speech is not a signifier, lots of children don't speak until they are 2 or 3, my son didn't (and he also has quite striking eyebrows due to being part Iraqi). It is speech regression that is a symptom, hence the association with dementia, I.e. a child who was able to speak and suddenly can't. Similarly loss of mobility and skills. Seizures, feeding difficulties etc.

Your doctors know that you have an illness which causes your anxiety. They won’t be sick of you, just as they won’t be sick of the other patients they have who have chronic illness that necessitate multiple appointments. They might not be able to give you prescription medication for your illness but there are other things they can give you, like reassurance and access to support.

Have you thought about trying different medication @worriedsickmam? My OCD ruined my life until I got the combination of meds right.

Does either you or dad have dark, thick eyebrows and eyelashes?
Had she always had thick eyebrows? With SF they’re not typically born with the very distinctive eyebrows, they develop over time (along with course features and thicker skin among other symptoms) due to the body’s inability to break down certain sugars that then build up in their system.

She was born with the thick eyebrows.
I naturally have thick eyebrows (well I did, ruined them with plucking over the years) her dad is dark and very hairy !

Honestly I’ve tried so many because after a while they just stop working for some reason, maybe that’s what’s happening here now…
Currently take 20mg escitalopram

As the daughter of a mother who had OCD/anxiety my childhood was utterly miserable and her issues are still causing problems in her 90s. Gently, you need to get on top of this both for you and your kids. You may have tried a million things but try a million more.
also - we now strongly suspect ASD or ADHD in my mother which might be an underlying issue for the OCD etc. is this something you’ve considered at all?

Hi, yes I am autistic but I also suspect adhd

It doesn’t help with this stuff does it? Could you get specialist help for the anxiety and ocd which works with your neurodiversity? As the daughter in this situation I’m angry that it badly damaged all our lives (to this day) and that while drugs and more invasive treatment was offered my mother has never acknowledged that her thought patterns were damaged or made any attempt to address it. I do know how difficult it is/this kicked off when MH was much less well understood - but still. You sound a great mum and just talking about this as you are is amazing. Keep going!

Hi - please got to Haidyns Hope on instagram. Carrie has a lot of resources for parents

You have all my sympathies, OP. I have been medicated (Paxil) for anxiety (and especially health anxiety) for all my adult life. When DD1 was a baby she was a slow weight gainer. I was CONVINCED she had any one of several genetic/mitochondrial disorders for a good couple of months and just couldn't shake my dread. Everyone knows about postpartum depression but not so much about postpartum anxiety.

I have OCD. When my daughter was a baby I noticed something on her scalp, googled it and went into a complete spiral.
I vividly remember going to the bathroom and having a massive panic attack. Every time it came into my head my heart felt like a load of coal coming off the back of a lorry.
I had read online that it could be a sort of tumour. I brought her to the GP. It turned out to be cradle cap 🤦‍♀️
The GP gave me a prescription for ADs. They have helped, a lot.
I would bet all my savings that your daughter is fine OP. I came across the syndrome you’re talking about during my last descent into health anxiety hell and it really is extremely rare.

I found that a beta blocker in conjunction with an anti depressant worked best. It’s definitely worth asking for a trial.