Newbie from UK - advice on my daughter's diet please.

[StellasMum]

Dawn, did they also do a throat swab culture? (not just a rapid test)

 

re the food and hair tests, it really is hard to say as things are different there than here. When I lived in England, I know most NHS doctors were not able to do anything "alternative" and so you would likely need to find an Integrative physician who understands environmental medicine protocols?

 

Hi Chemar, I assume it was a throat swab culture test ?? I don't actually know I'm afraid. It was a bit stressful and I was just pleased they listened to my suggestion of PANDAS at all. I will have a look for a holistic doctor though we would need to go private for that. xx

[StellasMum]

Welcome to the forum Dawn! Good to see someone else from the UK.

 

I don't think I've even heard of hair testing for food intolerance. Where did you come across that?

 

From what I can remember of what I found when I looked it up for myself, the IgG ELISA blood test (that's the one Mar used) is probably the most scientifically plausible. It's the same kind of test that doctors use for standard (IgE) allergy blood testing; the only question mark is over whether IgG antibody levels are a reliable guide to anything anyway. In the UK you can send for a home testing kit of that type from www.camnutri.com. If you send the sample away for them to process it's £111 for 40 foods or £160 for 60, but they also have a kit that you process yourself (which they say is just as accurate if you do it properly) that's only £65 for 46 foods. It's a bit fiddly, hence the discount, but doable. Couldn't say how well it works first-hand, as we bought one but then I never managed to prick my finger!

 

If you're dismayed by Chemar's suggestion of an "integrative physician" you're in good company, I've never heard of them either and I did look them up as best I could! I don't think that name is used over here. I'm interested to know how you got the strep test, though. Did you manage to find a doctor who'd heard of PANDAS, or did you just explain things to your GP and persuaded them to give it a go?

 

By the by, home-made cranberry lollies might not be as "simple" as you thought - some brands of cranberry juice are absolutely riddled with sweeteners and other additives because cranberries are so sour naturally. Sorry if you've already checked that.

 

All the best

Wombat140

 

 

Hi, I read about the food intolerance test using hair in another thread on here but I think the OP was from New Zealand. Have looked it up online and found one by York Labs but it seems to be out of my league financially at about £299 so I appreciate your alternative suggestions. I was hopeful to do one without having to get more blood out of my poor dd but the price is much better so maybe that's the way we will have to go. Not looking forward to getting blood out of her finger!

 

I didn't mention PANDAS to my GP when I first went about my dds tics. He just referred me to the paediatrician (who was a specialist in behaviour so not even in the right field really). I had taken some pages from the web on PANDAS and highlighted the parts relating to my dd and he was on my wavelength right away.

 

Funny you mentioned the cranberry lollies as I have stopped giving them now. I have switched to a pear juice with no added anything and it doesn't seem to affect her.

 

We are having no tv at all and doing lots of craft things which bring her tics right down. Desperate to 'fix' her before school starts again so thanks for your help. xxx

[Chemar]

Dawn

we did hair testing for my son, and then a follow up on blood work and I was amazed at how accurate the hair analysis seemed to be....but I don't believe it measured intolerances etc...instead it was more to check for levels of substances in the system, both good and bad, and seemed especially accurate on detecting toxins like mercury etc

[StellasMum]

Hi Chemar, maybe the blood test is the way to go for intolerances then, thanks.

 

Just took dd to docs as she said her throat was sore and asked him about getting antibiotics. He said the throat swab from last week showed a 'bug'- he wouldn't elaborate but gave us antibiotics without arguing. They didn't have the blood test back but given the tic flare up, maybe it is PANDAS?

 

Now looking for non dairy suitable probiotic and supplements that don;t contain anything which may set her off...

 

Meanwhile:

keeping the house dust/chemical/pollen and perfume free

not feeding her anything which could set her off-which could be pretty much anything

not going anywhere as the car sets her off and she is ticcing like mad if we go out

not watching tv

 

this is looking like an insurmountable task...I don't know how you all do it.

[Wombat140]

Healthspan are a good brand of supplements in my experience (mail order - Healthspan Ltd, PO BOX 64, St Peter Port, Guernsey GY1 3BT or www.healthspan.co.uk). They may cost slightly more than some brands, but they're good quality and don't have any gunk in them (well, apart from some of the chewable tablets, those are always dicey).

 

Could you tell me exactly what web pages you showed to the paediatrician, please? It's occurred to me that even if I go private, I'll still have to explain to my GP or someone to get a referral, and I'm having difficulty finding any web pages that summarise what PANDAS is. Mostly I just find long and technical research papers, or things that would only make sense to someone who'd come across PANDAS before.

[StellasMum]

Thanks again! The page I printed out was reasonably basic-I highlighted the parts in the 'diagnostic criteria' section that related to my dd-she had scarlet fever which is on the list.xx

http://www.adhd.com.au/PANDAS.htm

[Ozimum]

Thanks again! The page I printed out was reasonably basic-I highlighted the parts in the 'diagnostic criteria' section that related to my dd-she had scarlet fever which is on the list.xx

http://www.adhd.com.au/PANDAS.htm

This document has been around for a while and appears to quote some dated (and conservative?) NIMH documents - You will find more up to date documents here: http://www.nimh.nih.gov/index.shtml

For example: http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml

 

Do check out Pandas Network: http://pandasnetwork.org/?track=nwsltrdec2010 - Dr Swedo's article is a good one to take to drs.

[Chemar]

Dawn I really suggest that you take a look at our PANDAS forum pinned "Helpful Threads" for updated info

 

for example, here is one of the posts there

http://www.latitudes.org/forums/index.php?showtopic=3928&view=findpost&p=27173

[Wombat140]

Thanks everybody! I think some selection of those surely ought to cover it, evidence and all. The mass of assorted things under "Helpful Threads" has always made my head go round and round, so I'm grateful for someone who can find the right information in it!

[Wombat140]

Looking through those pages, I've just realised that they all describe the most standard picture of PANDAS, emphasising the mood swings and the overt strep throat at the beginning, neither of which I've had. Is there anything handy that mentions that this isn't invariable, does anyone know? Might be a bit embarrassing going to my GP and presenting as evidence a lot of descriptions that don't match my symptoms! If not, I'll go through "Saving Sammy" and see if there's a suitable bit I could photocopy.

[StellasMum]

Looking through those pages, I've just realised that they all describe the most standard picture of PANDAS, emphasising the mood swings and the overt strep throat at the beginning, neither of which I've had. Is there anything handy that mentions that this isn't invariable, does anyone know? Might be a bit embarrassing going to my GP and presenting as evidence a lot of descriptions that don't match my symptoms! If not, I'll go through "Saving Sammy" and see if there's a suitable bit I could photocopy.

 

So sorry Wombat, I haven't got anything to offer really. I must admit I find a lot of the PANDAS stuff is so involved it does my head in too! Maybe you need to do some more digging and just explain the bits that jumped out at you and seemed to match your own experiences.

Whilst my dd was on antibiotics last week she made such an incredibly fast improvement, there must be something in it. She seems to be going downhill a bit after finishing the course-multiple tics today-so I feel she needed a longer course possibly. Fat chance of more antibiotics from MY dr. What to do?

Sorry I can't be more help. Am feeling worn down today. Hope you find something useful.

[Chemar]

Looking through those pages, I've just realised that they all describe the most standard picture of PANDAS, emphasising the mood swings and the overt strep throat at the beginning, neither of which I've had. Is there anything handy that mentions that this isn't invariable, does anyone know? Might be a bit embarrassing going to my GP and presenting as evidence a lot of descriptions that don't match my symptoms! If not, I'll go through "Saving Sammy" and see if there's a suitable bit I could photocopy.

 

I am confused? If you don't have any PANDAS symptoms, why do you want to follow that route?

[Wombat140]

Chemar - Didn't mean I had no PANDAS symptoms, only not those ones - the mood swings, the initial throat infection and, come to think of it, the "episodic" course - knew there was something else - mine go up and down but never stop completely. What I do have is severe OCD/tics which started pretty much overnight for no reason at all. Well, rather odd kind of OCD, no obsessions only compulsions. All symptoms uncannily like Sammy Maloney's, in fact, I found when I read the book recently.

 

Dawn - OK, I can find something. Sorry to hear your daughter's having trouble again, but at least you now know something that works. Afraid I haven't any ideas about getting more antibiotics, though. Maybe if you explained, to either the GP or the paediatrician, how much things had improved while she was on the antibiotics, they might surprise you. Seems only common sense to me, although not all doctors seem to have much time for common sense. If not and you happen to be with a group practice, you could try a different GP, although I suppose then you'd have to explain again, and I wouldn't blame you for blenching at that idea!

Keep at it, you'll get there.

Good luck

Wombat