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

[StellasMum]

Hi there, I am new here and looking for help for my 8 year old daughter's tics. We have not yet been diagnosed but she has been experiencing vocal and motor tics for over a year, along with repeating phrases to herself, ocds and anxiety.

We had our first paediatric appointment this week, which included a throat swab for strep and are having a blood test next week to test for 'food mix' allergies (just the basics, wheat, dairy, nuts) and strep. Things are moving very slowly and I won't see another paediatrician for months...

 

In the meantime, my daughter's temper flare ups are making life very hard at home. I am trying to cut dairy from her diet as she had a sudden increase in tics after having a caramel icecream one day. I am aware it could have been any number of ingredients in the icecream that caused this but dairy seemed the first to try. I am worried she is missing out on calcium although I am trying to make up for this with added calcium bread (which she hates!) and spinach and red cabbage daily. I haven't found a milk she will drink yet. She hated coconut milk so I am trying rice milk this week.

 

Anyway, sorry for rambling! I would like some advice on any simple supplement I can give her. There seems to be a lot more help and information on these conditions in the US but I don't know if there are any recommended supplements available here in the UK that I can safely give her. At the moment all I am doing is using a magnesium spray twice a day and trying to eat basic foods with less additives which doesn't seem to be helping at all.

 

My daughter has persistent phlegm in the mornings which I have always put down to possible asthma (like her sister) though our doctor insists it isn't. Maybe this is a food intolerance too? Any opinions on this would be interesting.

 

I am reading Sheila Rogers book on natural treatments for tics and tourettes at the moment and my head is spinning with too much information and no clear indication of what to do next! Any help would be fantastic. Thanks in advance.

[Chemar]

Hi Dawn

when the doctors did the strep test did they do a throat culture as well as blood tests to check for strep antibodies?

Just from what you have written I do wonder if this may be a case of PANDAS (or PANS as many now refer to it?) I would suggest you take a look at http://www.pandasnetwork.org and see if that sheds any light.

We also have a PANDAS forum here

http://www.latitudes.org/forums/index.php?showforum=17

 

You can get more than enough dietary calcium from a dairy free diet rich in the green and cruciferous veggies, as well as things like tofu, molasses, and more http://www.whfoods.com

specifically http://www.whfoods.com/genpage.php?tname=nutrient&dbid=45

 

http://www.iherb.com ships inexpensively to the UK and has the least expensive and excellent range of supplements.

 

Epsom Salts baths (magnesium sulfate, available there at places like Boots or the supermarket I would think) are an excellent additional source of magnesium, absorbed transdermally

[StellasMum]

Hi Chemar, Thanks so much for your quick reply! The swab was to test for possible PANDAS at my request although he didn't mention specifically a 'culture' test. I took a printout of some PANDAS info to the doctors with me as several of the causes seem to relate to my daughter; she had scarlet fever some years ago and has had regular bouts of tonsilitus but never enough for the doctor to suggest removing the tonsils. Hopefully when we have a blood test next week, it may help shed some light on this.

I really appreciate your links and will have a look into them and the supplements on offer ASAP.

 

Many thanks again,

 

Dawn

[Chemar]

Dawn

I really do think you need to be investigating PANDAS especially with a history of scarlet fever!

It may be that the doctors there that you saw are not very clued up on PANDAS (even here in the USA they are few and far between) but just a throat swab is insufficient to test for PANDAS as a child does not need an active strep infection to have the condition. Do post on our PANDAS forum, giving your child's history, and also that you are in the UK so that the parents there may be able to offer some guidance

[StellasMum]

Dawn

I really do think you need to be investigating PANDAS especially with a history of scarlet fever!

It may be that the doctors there that you saw are not very clued up on PANDAS (even here in the USA they are few and far between) but just a throat swab is insufficient to test for PANDAS as a child does not need an active strep infection to have the condition. Do post on our PANDAS forum, giving your child's history, and also that you are in the UK so that the parents there may be able to offer some guidance

 

Thanks Chemar, I have read through the 1st page of threads on the PANDAS page. Will take your advice and post regarding how to get a diagnosis.

[karol_dr]

Hello Dawn, I also want to make a blood test for food mix, can You tell me the name of your test or maybe You can recommend some test?.

 

Thanks.

[mar]

Hi dawn,

 

I wanted to mention the phlegm in morning. My ds has this every morning along with sneezing about twenty times on waking up . Doctors suggested asthma because he was just so stuffed up and obviously his breathing was impaired. We had the igg Elisa food sensitivity vloid test done on him and 28 things came up. Once he was on elimination diet his morning phlegm and sneezing improved greatly over time. No asthma thank goodness in 3 years. So in his cause it was due to foods. He has outdoor allergies also. But watching his diet with food allergies and sensitivities has helped his outdoor allergies. He has not taken allergy meds in 3 years. I hope this helps some.

Mar

[StellasMum]

Hello Dawn, I also want to make a blood test for food mix, can You tell me the name of your test or maybe You can recommend some test?.

 

Thanks.

Hi Karol, it used to be called a RAST test and it's just a general blood test which we'll get done at the hospital. The doctor has written on the request form 'food mix' which I think just covers wheat, milk, eggs, peanuts, maybe soy? As far as getting something more specific, I think we'd have to arrange that ourselves privately. My eldest daughter had the same test a few years ago to help manage her asthma (it showed her various allergys in the form of a percentage so was quite helpful). You have to get referred by your GP so they would be your first port of call. xx

[StellasMum]

Hi dawn,

 

I wanted to mention the phlegm in morning. My ds has this every morning along with sneezing about twenty times on waking up . Doctors suggested asthma because he was just so stuffed up and obviously his breathing was impaired. We had the igg Elisa food sensitivity vloid test done on him and 28 things came up. Once he was on elimination diet his morning phlegm and sneezing improved greatly over time. No asthma thank goodness in 3 years. So in his cause it was due to foods. He has outdoor allergies also. But watching his diet with food allergies and sensitivities has helped his outdoor allergies. He has not taken allergy meds in 3 years. I hope this helps some.

Mar

 

Thanks Mar, that's good to hear. I hope the test shows something up so we can help her. Every morning she sounds like she's going to cough up a furball! Then by the time I tke her to the doctors he always says 'her chest is clear', it's maddening!

[mar]

Yes he was liturally my wake up call in the morning. The coughing and sneezing and blowing his nose. I taught him how to suck it in and spit out the hockers( I know I am spelling it wrong). So then we had them every morning but I just wanted to make sure he got as much of the phlegm out that he could. I didn't want it to go into his chest. But he is is doing great with those morning wake up calls. I think stopping this helps with other issues. Good luck I hope you find some relief.

Mar

[StellasMum]

Hi all. Thanks Mar, I think we might have to look at the IGG test though looking online it seems to cost about £140.

 

Am having a really black day today. My daughter broke up for the school holidays yesterday which was a relief because she is starting to have social problems due to the constant "Hmmm-mm". I thought things will be better with no school but..

 

We went to a little seaside town to enjoy the sunshine (we haven't had any for a while). My eldest dd(15) wanted to look in a shop but as soon as we entered, my youngest dd(8) started ticcing like crazy. Like an "urgh.urgh.urgh" sound. Louder than usual and non stop. For the first time I saw people look. She wanted to leave so we waited outside. It was the kind of shop with multicoloured things everywhere so I thought maybe it's sensory overload. There were crowds of people in the street with it being the first sunny day in weeks, dogs on leads-she hates dogs, a band playing outside the pub...I tried to get her away to a quiet spot to look out to sea. She didn't relax like she normally would. It was awful.

 

It calmed slightly for a while at home;no tv, just quiet playing. But has come back at dinnertime. I tried to give her a simple tea-chicken, mashed potato, spinach and home made cranberry lolly for afters. She is still ticcing like never before-almost a yelp. I feel so helpless. My hubby has given her a bath and they are listening to a meditation cd but I can still hear her tic.

 

We haven't been referred to a neurologist. The doctor this week said I can call him regarding diet and the blood test we are having this week but honestly, all this messing with her diet and I'm just watching her fall apart. She didn't tic once at the appointment but today she is a pefect example of 'tourettes in a nutshell'. I tried recording her on my mobile phone tonight but can't seem to get her at her worst-she stops right when I don't want her to! Sorry for the long moan, I just wish I could do something.

 

Will get epsom bath salts tomorrow and camomile tea- looks ridiculous reading that back but am really stuck.

[StellasMum]

DD had blood test at the hospital yesterday for Strep and 'food mix'. Her tics are so bad at the moment, she couldn't possibly go to school in this condition if it weren't the summer holidays. Our family GP is on holiday but I will see him on Monday and ask if we can try antibiotics as my husband had a sore throat over the weekend which may have bought on this tic explosion if it's PANDAS.

As she IS bad right now, maybe there's a better chance the strep may show up in yesterdays blood test? I hope so anyway.

 

I really want to try getting her a food intolerance test done asap. Can anyone advise on getting one done in the UK-who is best to go with and is the hair one the best? How long does it take and how much will it cost?

 

Many thanks.xxxx

Edited July 25, 2012 by Dawn R.

[Chemar]

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?

[Wombat140]

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

[Chemar]

Integrative medicine combines conventional and "alternative" aka complimentary or naturopathic. An Integrative Physician would therefore be a fully qualified M.D. who is also knowledgeable in the other areas. If the term is not used in the UK, then I am not sure what they would be known as there now, but I know for a fact they exist as I was in the care of one during the late 1970s when I was still resident in London. I believe at the time he was known as a holistic physician.