update on my daughter (3yo undiagnosed ataxia) and CoQ10

[ritaa]

I've been busy these past few weeks and only today I had the time to read some recent posts on children with ataxia in this community. They all sound like my daughter's medical history: global developmental delay, wobbly walking, constantly falling, ataxia and hypotonia get much worse when she's ill, etc...

A couple of weeks ago I took my daughter to see a Neurologist who specializes in rare metabolic and genetic diseases (we are not from the UK). Unlike all previous doctors, she does not think this is episodic ataxia. She thinks my daughter has some kind of mitochondrial disease, for instance NARP syndrom. BTW - She saw some findings on her MRI scan which was considered normal by all the other doctors we've seen before. So now we are waiting for results on some genetics tests. Hopefully we will have a diagnosis before my daghter turns 4.. that's the good news.

Bad news is that most mitochondrial syndromes this neurologist has in mind don't have any medical treatment...

In the mean time she advised me to start giving her CoQ10 (120mg/day). She says it improves cerebral function and can help with the ataxia. Has anyone tried taking CoQ10?

[wobblybee]

Hi😊 Unless your daughter has been tested and found to be deficient in CoQ10, it's unlikely to alter symptoms. Several people on here, myself included, have tried CoQ10 but as far as I'm aware all are adults. Personally, I didn't improve, I'd hoped for an increase in energy, perhaps I wasn't taking a high enough dose. But, I'm always wary of interaction with other Medication.

You could ask the question on a Facebook group, Pediatric Cerebellar Atrophy Support. 🙂xBeryl

[ritaa in reply to wobblybee]

Thanks, I will look up this group

[Litty]

You obviously have to be very careful with what you take, especially with little people but I can tell you my experience (mid 50s).

I used to help with research and many years ago I helped with I helped some drs at the Royal Free Hospital who said that Co Q10 was helping some patients with Friedreich's ataxia and that it would do me no harm to take it in case.

So I have taken it for many years fine (not sure it does much but we are all so individual and you do not know how bad you would be without it??)

They have recently discovered that the Ubiquinol (more expensive) is supposed to be better?

As an adult I try quite a few supplements and this website is quite good

mskcc.org/cancer-care/diagn...

Hope this helps : )

[ritaa in reply to Litty]

Thank you, I think I will give it a try for a few weeks, to see if it makes a difference or not. If there is anything than can stop her from falling all the time I am willing to try it.

[Litty in reply to ritaa]

I have 2 grown-up children and it is so hard when they are poorly, so I would try anything and since her doctor said to try I am sure it will be ok.

Although it does not work for me many people recommend trehalose. It is just a sugar substitute. I would be tempted to add some to her food every day for a bit? You never know if it helps. If you search you will find a few posts on it.

Good luck anyway.

[Mneutz]

Hi, I have SCA- type 6. I take COQ10. I do think it helps with energy and thinking clearly. I forgot to take it one day and I noticed a difference in how my legs felt more tired. My neurologist said he didn't know of any side effects so encouraged me to try it. I am also a nurse, so I know they routinely give it to people with CHF -Congestive heart failure, to improve their energy. Good luck. 😊

[ritaa in reply to Mneutz]

Thanks. I'm hoping it will have a good effect on her too

[wobblybee]

😏 I'd read that Ubiquinol (a highly absorbable form of CoQ10) is recommended for Women past menopause. So, I tried that for several weeks. For me, it did produce a reaction but not what I'd hoped for.

At first I was pleased to actually feel energised but the downside was I felt inclined to tackle tasks I'd normally avoid because of ataxia symptoms. I pushed myself even though I felt tired🙄 Common sense had left the building🙄

I overexerted myself, and had a horrible flare up of symptoms, leaving me zombified for a couple of weeks😑 This gave me quite a scare and I stopped taking Ubiquinol. In all fairness I have to say, the recommended dose is 100mg and sometimes I took 200mg🙄 xB