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I have never used a discussion board before, but this seems to be the best place for information on tourettes that I can find. My son is 5, he has not had an official diagnosis as of yet (he has been seen three times for observation and there were no tics present during the observation - murpy's law I guess!) but I am almost 100% certain this is what he has. They have never been very noticeable to anyone but our immediate family until recently. He does some very loud breathing and sniffing and runs his hands across his face or places his had over his nose and twists his head to the side at the same time, sometimes so vigorously he rubs his face raw and can't speak for several minutes. I'll ask him a very simple question and he will tic for what seems like hours, only to blurt out 'yes!' at the end of the event. The last few days he has been doing it even while eating or drinking and spilling food and other things all over himself. I worry a lot about how severe the tics will get over time - do they slowly progress to more violent outbursts as they get older?

He has just started school full time and I think this is what has triggered the more intense tics (they were just vocal noises prior to this). His teachers are very open to discussing it, but also have no information or prior experience with Tourette's. He goes to a country school, there are 14 kids ages 5-11 in one classroom so as you can imagine it is quite hectic at the best of times. there is also one 11 year old with autism in the class, and another with sever adhd - my son seems quite normal and quiet in comparison plus there is not a lot of time for observation. I live rurally in New Zealand and I'm having trouble finding support and information over here. There is a wealth of information on the internet but it is all very overwhelming, I can barely figure out where to start. Definitely with diet, I would love any suggestions if anyone has the time to help me with this.

I also don't know anything about PANDAS/IVIG etc - is it really that easy that you can get a positive strep test and go on some antibiotics and see a complete miracle?

My son is a very bright social little creature, and seems very happy. He does not seem to have any other noticeable problems as of yet.

Any help or even just someone in the same boat to talk to would be greatly appreciated!!

 

Kristen

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Hi Kristen and welcome

 

Not all tics are Tourette Syndrome so I would be cautious in accepting that diagnosis without either a family history of TS or a longer period of evaluation etc

So many other things can cause tics, especially in very young children...and sadly not many conventional doctors are even tuned in to this!

 

I am getting ready to go to work, so can't post long now, but do take a look at our Helpful Threads pinned to the top of this board and maybe consider ordering Sheila's book as well as that really is such a valuable resource.

 

re the strep...it is not as simple as just a strep test and some antibiotics in all cases as often the strep is only detectable via antibodies in the blood and not all antibiotics work the same way. In the case of PANDAS (or other infection induced tics) the immune system can be severely compromised and also brain inflammation can result, needing more intensive treatment. Most often (but not always) the tics in those cases are accompanied by behavioral changes, OCD etc

 

anyway, do start reading through our helpful threads and also do some searches on the forum for information on diet, allergies etc

Other members will have more info for you too

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Hi,

Welcome! Just wanted to ditto what Chemar said - check for an infectious trigger such as strep as in PANDAS, or other infections (PITANDS/PANS). I suggest also that you go through the symptoms over on the PANDAS forum (see the helpful pinned threads at the top) and/or the PANDAS Network: http://pandasnetwork.org/

Also - there's a Biomedical email group which covers NZ and OZ and I'm aware there are some Biomed/DAN! trained health practitioners in NZ who are well regarded. They would offer you an integrative approach and could check for infections, immune issues and diet etc. If you would like some names, let me know and I'll dig out their contact details and send you a personal message (PM).

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Hi Kristen

 

I am also new to this site but have over the past read lots of mothers posts. I have an 8 year old gorgeous little boy who was born at 26 weeks, he went through years and years of speech therapy. Jan 2011 he started blinking lots real hard out blinking, I took him to the Opticians and he said his eye sight is perfect but he felt he needed to have an op to sort out his slightly wondering eye (only ever happened when he was really tired!)..his eye blinking continued and his eye op was scheduled for March, once he had the op i though the blinking would stop, but it didn't, we saw the specialist who did the op and he said he was probably reacting to a stitch that was still in his eye so once again I hoped it would go away, we were booked to go to the UK for 6 weeks in June, and in May the blinking stopped! just like that, it stayed away for May, June, July and came back the 2nd week in August (2 weeks after arriving back to NZ), the blinking was really bad, it was none stop and we had some shoulder shrugging.. I started Lucas on Magnesium supplements and Zinc Supplements, early Nov it went away again, and stayed away this time until mid Jan 2012 when it came back this time he had facial grimaces, shoulder shrugging and all sorts of other tics! I started to do lots of research...and it all pointed to Touretts, the Dr's and Pedatrician said it wasn't that, but he would put me intouch with a child phycologist that we are still waiting to hear from.

 

In the mean time after me feeling so down and sooo sad watching my baby I decided on an allergy test...should have done a blood test but that really stresses Lucas out (took a week to get his last blood test done with lots of tears!) in the end we went for a hair allergy test (I am never a full believer of these tests but was willing to try anything)..the results came back intolerant to Sugar, wheat and eggs as well and some artificial colours etc.. we started a diet straight away, thought there is no harm in trying!!! after 2 days he was sleeping better (he goes to bed real good but gets up pretty early, he was sleeping for at least 30 mins more in the morning...and his tics had reduced by around 97% still having a few a day (where as before it was more like 2 a minute)..we have been on this diet for almost 2 weeks and it's still going fab, still only about 97% better but I couldn't be happier..i'm hoping this is what is helping because I can control this...but it may be worth trying an allergy/intolerance test.. I did up the supplements as well (i know give him Spiralina, flaxseed oil and Evening Primrose Oil)..he still has ups and downs so I feel there is something else his body could be intolerant to or we have something not quite right but after this 3 month strict diet we have to introduce the foods back one at a time to monitor how he reacts, i think then I will get a proper blood test done.. one obstacle at a time!.

 

Where abouts in NZ are you? we live in Carterton in the Wairarapa...

 

Good luck with what ever you try but it is worth trying and researching, you read so many success stories and they were the reasons I didn't want to give up and will never give up finding things to help Lucas..he is bright, funny and totally awesome.

 

Julie

 

 

I have never used a discussion board before, but this seems to be the best place for information on tourettes that I can find. My son is 5, he has not had an official diagnosis as of yet (he has been seen three times for observation and there were no tics present during the observation - murpy's law I guess!) but I am almost 100% certain this is what he has. They have never been very noticeable to anyone but our immediate family until recently. He does some very loud breathing and sniffing and runs his hands across his face or places his had over his nose and twists his head to the side at the same time, sometimes so vigorously he rubs his face raw and can't speak for several minutes. I'll ask him a very simple question and he will tic for what seems like hours, only to blurt out 'yes!' at the end of the event. The last few days he has been doing it even while eating or drinking and spilling food and other things all over himself. I worry a lot about how severe the tics will get over time - do they slowly progress to more violent outbursts as they get older?

He has just started school full time and I think this is what has triggered the more intense tics (they were just vocal noises prior to this). His teachers are very open to discussing it, but also have no information or prior experience with Tourette's. He goes to a country school, there are 14 kids ages 5-11 in one classroom so as you can imagine it is quite hectic at the best of times. there is also one 11 year old with autism in the class, and another with sever adhd - my son seems quite normal and quiet in comparison plus there is not a lot of time for observation. I live rurally in New Zealand and I'm having trouble finding support and information over here. There is a wealth of information on the internet but it is all very overwhelming, I can barely figure out where to start. Definitely with diet, I would love any suggestions if anyone has the time to help me with this.

I also don't know anything about PANDAS/IVIG etc - is it really that easy that you can get a positive strep test and go on some antibiotics and see a complete miracle?

My son is a very bright social little creature, and seems very happy. He does not seem to have any other noticeable problems as of yet.

Any help or even just someone in the same boat to talk to would be greatly appreciated!!

 

Kristen

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Hi everyone

Thank you for the replies. I'm definitely not using the forum correctly as I just stumbled upon your replies by default! I have made some appointments for some tests since then, and have been doing ALOT of reading. It's ridiculous! The more you read the more there is to read. I am definitely feeling very overwhelmed.

 

Julie - I live in Ross, a tiny town on the west coast, SI. I have made an appt with Rodney Ford in chch for the 10th of April. I'm hoping he can point me in the right direction of narrowing down my massive lists of tests I want my son to get done. I'm thinking the main ones will be blood (allergies), heavy metal (there is a lot of coal burning and gold mining around us), and stool samples for yeast. Have you had any of these done yet? Do you use a DAN doc in NZ? I have a friend down the road that has started using one, but he's so expensive they can only see him(via skype) about once a year so this option is def out of the question for us. I should note to you that I'm Canadian, and every year that we are able to fly back to Canada for a visit my sons outward allergy like symptoms COMPLETELY disappear and he just glows. Weird isn't it? Allergic to NZ. I'm wondering if it has something to do with the housing standards and the mold, or the log burners. I guess we'll find out in time.

 

I'm reluctant to start any elimination diets (minus throwing my microwave out the window and omitting sugar) until we get some test results done - apparently you can skew the results if you alter your diet??

 

Has anyone tried a yeast free diet with nystatin? Or colostrum supplements? I started my son on some supplements and a probiotic, but stopped with the vits because although they had everything in them that i was looking for they also have about 60 ingredients that I know nothing about. I got them from the health food store and the woman who works there also has a son on the spectrum, but you never know.

Since stopping sugar, food coloring and additives my son has been ticcing a bit less, but nothing amazing. He has also been having these amazing mood swings which I'm finding really difficult to deal with.

Thanks again for all your help.

Kristen

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  • 2 weeks later...

Hi Kristen

 

Just wondered how your Dr's app went yesterday? did they do the allergy tests, if so which ones did they do? when do you get the results? How is your little boy?

 

Things for my little boy are still good with the diet, his teacher was/is amazed with the difference, but we are still seeing a few Tics here and there and weekend just gone we did have a period where he ticced quite a lot at one point, we got told yesterday by the herbalist lady who did the allergy/intolerance test that he needs to eat more nutritional foods! I must admit I was finding school lunches the biggest hurdle! but she gave me a whole heap of ideas, so really hoping this works and we see no tics, but really all in all I can't believe how much taking Sugar, wheat and eggs out of his diet has reduced his Tics, it is amazing.

 

We are off to Wellington tomorrow for the night, staying in a hotel that we booked before starting this diet and it's full buffet breakfast, feel so sad for my little food crazy boy, but the hotel have said they will sort him out `which is so nice! not sure what they are going to do yet for him but fingers crossed he will think it's yum.

 

Julie

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  • 3 weeks later...

Hi Julie

The doctor's appointment went well, of course Jack didn't have a single tic the entire time we were away! He ordered alot of the tests I asked for (haven't had the results yet) and advised me to take Jack off gluten and dairy, sugar, color and additves. I have done that and he was amazing for about 2 weeks, hardly noticed a thing. And then all of a sudden they just came back, out of nowhere and haven't stopped since. I feel a bit stumped. I've just ordered a hair analysis and hopefully the results will give me a bit more information. I notice his tics are really bad if he is hungry, I'm sure he's hypoglycemic - I had a blood test done for this but we weren't informed that you needed to fast for it so the results are false negative. I'm not wanting to go back to our doctor here (yes, only one choice on the entire coast!) as she treats me like a neurotic crazy person and dismisses any notions or ideas I have towards Jack (who of course has never shown a single noticeable tic in her office!). We also have had 5 observations from CAMHS where he didn't exhibit any strange behaviour whatsoever, so I think they think I'm being a bit neurotic as well...

Do you wonder if your son's tics are allergy/seasonal related? Do you know if the hair analysis shows anything like that? I just wonder for us as Jack's tics always seem to pick up in Feb/March and continue for the winter, and he barely has any signs of them in the spring/summer. I can't remember if I mentioned but when we went to Canada last May he wasn't ticcing, but he looked tired, baggy eyed, his skin was bad and he had a sore on his lips (quite a big one) that had been there for over 2 months. We arrived in Canada and he just glowed after being there for just a day. The difference was amazing.

I would love some tips on good lunches, I'm really struggling with that one as well. We haven't cut out eggs, but I wonder if that could be a culprit too (although then he would be living on broccoli and rice cakes...).

How did your night in Wellington go? Hope the hotel made him something nice!

Kristen

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Hi Kristen

 

Wellington was awesome, the Hotel was brilliant, they made Lucas a lovely breakfast! for dinner went to Wagamama and he had Rice noodles and veg...he loved it all so that was great.

 

The hair test only really showed sugar, wheat, eggs, some food colours and a substance that you can find in fly sprays (so we stopped using them). Lucas does still tic but literally once or twice a day if that..I am really not sure what the main cause is but i'm picking it's going to be mainly the sugar!...in mid June we will start in re introduce those foods, I think eggs will be our 1st and see how that goes..

 

You say Jack gets worse when hungry well i noticed that Lucas got a few tics even into the diet when he was hungry (especially around 2.00 in the afternoon) so I asked his teacher if he would allow Luke to eat something from his lunch box if he needed to..also I went back to see the hair annalist (herbalist) lady and she looked through my daily food diary and told me that Lucas wasn't getting enough protein! and gave me a few good idea's especially for lunch... hand fulls of dates, chicken drumsticks, wraps (which i haven't yet mastered) more like pancakes at the mo...but fully filled! with some of the following - tomatoa, avocardo, hummus, cheese, chicken, salmon, tuna... I make him up veg rice pasta with tomato, cheese and either tuna. salmon or chicken cold for lunch! - she really went on to say make sure he is eating the right food and more of it! she did say nuts...but Lucas hates anything crunchy or really chewy!!!! I give Luke a lot of fruit...especially banana's and his fav are fijoa's..he pretty much lives on pancakes in the mornings! i give him about 2 or 3 with frozen blueberry's and a banana (with a tiny bit of cream)...

 

I do find it still hard but we are experimenting all the time! `More Wilson' are great for all their different gluten free flours etc i wish I could master sugar, egg and wheat free bread but they all taste gross, think i might stick with Scones!!

 

How long do you have to wait for the hair results to come back?

 

I don't think Lucas's tics were / are are seasonal, he seems to have had them through all different seasons.. funny that Jack was great in Canada, but Lucas was the same when we went back to the UK, but saying that his tics had stopped just before we went but came back 2 weeks after arriving back here!...

 

I'm convinced that Lucas's diet is the main reason his tics have gone away...since him eating better we have seen less tics again but still once in a while so i'm thinking there is still something I have missed..if he is ok with introducing the foods back even if he is not! i will get a proper food allergy/intolerant test done...would be really interesting to see if it matches up or gives me another food to take out!, to be honest I really would be happy to keep Lucas on this diet for a good while longer if we had to...it's really not a big issue and it's something I can control.

 

Just one other thing I do give Lucas supplements not sure if they are helping but too scared to give them up...I give him Magnesium (Thompsons Organic - 1 tab a day), Zinc plus (1/2 a tab a day), B Complex (1 tab a day), Flaxseed oil tabs (sometimes 2 a day) and primrose oil tabs (1 a day).

 

Keep intouch

 

Julie :)

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