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.

I think you need a GP to tell you you’re being stupid, not MN people who aren’t medically qualified.

Well done for recognizing this as an intrusive thought, that’s exactly what it is. Your child has perfectly normal eyebrows. How do you usually deal with such thoughts? Does exercise help?

No, she needs a GP to treat her anxiety.

See your GP/HV. Not MN/FB.

They’re usually fleeting and I can brush them away, but this one is sticking around and distressing me. I understand people will say you should speak to the gp about your anxiety, I’ve done it a million times, done cbt a million times, none of it works on me!

It's sticking around because there are a few big social media accounts for particular little girls with this disease and they are very active. Do you spend a certain amount of time scrolling Instagram and Facebook? As you'll keep seeing them and it will just keep refreshing it in your mind. The reality is this is an incredibly incredibly rare disease and your child is highly unlikely to have it.

I always recommend this book for intrusive thoughts, as a fellow sufferer and I normally don’t like self help books https://www.awesomebooks.com/book/9781626254343/overcoming-unwanted-intrusive-thoughts
I have seen children with San Fillipo syndrome through work , your daughter has perfectly normal eyebrows please try and tackle this anxiety and enjoy your daughter

No I actually don’t have any social media, but I saw it on Apple News. This particular thought bothered me when she was a few months old aswell. It’s so hard when you have anxiety because they always mention mothers instinct but when you have this level of anxiety you don’t know what is your gut speaking/what’s the ocd/anxiety

Her eyebrows look perfectly normal to me. Absent other concerns the chances of her having this are almost nil - frequency reported as 1 in 70,000.

Definitely worth continuing to find ways to manage your anxiety.

Thank you for the link I will take a look. I hate when my brain does this, it’s exhausting.

My dd also has really long thick eyelashes which I thought was just a baby thing but I see that’s also another physical sign of the disease

If you are concerned, take her to the doctor, asking randomers for medical advice is likely to make you feel worse!

I can’t see the doctor taking me seriously though

Your daughter has dark hair very similar to my granddaughter, who has eyebrows like this and beautiful eyelashes , I do know what it’s like to be in this cycle but if you acknowledge that these are just intrusive thoughts and let them pass , the more you try and suppress them the worse they get. The book explains it much better than I can. There is a very funny bit in it about carrots

Who cares what the doctor thinks? If it puts your mind at rest, go and see them. Your child's health is more important than what someone might think of you.

So what is the alternative? I understand anxiety etc but that is even more reason to ask a professional

If the doctor doesn't take you seriously then the chances are it's because there's nothing serious going on. Of course there are plenty of horror stories of GPs missing signs and symptoms but it.is incredibly rare.

I had a friend who googled a random, mild quirk of her daughter's and found it was a symptom of something scary. She went to the GP who apologised it had been missed and said the midwives should have picked it up when Mum commented on it at birth. The daughter underwent relevant tests and was absolutely fine.

If it's bothering you, it's worth asking a professional. Always.

Do you find that rationalisation around these thoughts helps?
First off your DDs eyebrows are lovely and normal looking.

This is a very very rare condition, 1 in 70000 births. That's a percentage chance of 0.0014%. You have a higher chance of being struck by lightning this year than your daughter does of having this condition.

For her to have it, both you and her dad need to have a mutated copy of the gene, which you'd have got from one of your parents. Do you or him have any family history of this condition? If not, then the chance is so very very small.

Do you worry about crossing the road, driving, walking, using the stairs? All of these daily activities carry the same amount of risk as the possibility that your DD has this condition

Your DD has the cutest eyebrows ☺️❤️
Intrusive thoughts are the worst. What other symptoms does she have to make you think she has this syndrome?

That we’re aware of absolutely no family history of this or anything like it.

We have 3 children, would one of those also have to have it ? Dd is the youngest

She is speech delayed, when she first started walking her feet were turned in, we have asd In the family (myself and ds) I think it’s mainly just the eyebrows and eyelashes, when I’m looking at some little girls with this I see my DD’s face in them, but I don’t know if that’s just the ocd making me see her, If that makes sense?

It does make complete sense.
I would chat with your HV or GP about your fears. Mention the speech delays etc and see what they suggest. No harm in asking specifically about the syndrome.
I find OCD so hard. You could get her tested privately but it’s almost feeding the OCD isn’t it. When you get that negative result will you be looking for the next thing? (I have OCD myself please don’t think I’m being unkind, breaking the cycle is the hardest thing)

So no family history. And you have two older children who don't have it. The chance of your daughter having this is getting lower the more you're posting.

No you’re completely right. With ocd it’s always something, although I’ve been okay for absolutely ages, I think seeing this article has triggered the previous intrusive thought and now it’s consuming me. I just told my dh, broke down crying about it and he just laughed at me, he doesn’t get it, thinks I’m nuts

I’m trying to cling to the fact my other kids don’t have it, would it be a guarantee they’d have to have it though? I don’t know how genetics work

This is really tricky isn't it. OCD wants certainty but then it gets it and still isn't happy. It will find something else. I'm not sure how useful CBT is with OCD. Systemic therapy can be more useful.

I'm not commenting either way on your daughter's eyebrows because I really wouldn't know and mores to the point I'm not sure a thousand messages saying she's fine will put your mind at rest anyway

Which is meant kindly