where we're at.....

[zinto]

HI all

its been a while since I have had a chance to check in but still keep an eye on new posts.

Would love to provide you with an update and get your input on here knowing everyones experiences are so diverse and everyones research so thorough !

we finally got our son ( age 6 - suspected genetic TS but undiagnosed yet - 18 month history of mild motor and vocal tics) in to the see a recommeded environmental physician. we waited 6 months to see him. He was very quick so I dont feel like we got the time we needed to ask all of our questions but he seemed familiar with tic disorders and says he usually just treats with supplements and they always work but now he prefers to look at what is going on inside the gut to cause the imbalance and see if that can be treated rather than just supplementing.

so we have sent my sons stool sample off for a faecal microbial analysis which apparently will reveal if there are any strep issues as well as a detailed analysis of what else is going on in there. does this sounds like a worthwhile test ??

 

he has also in the meantime put him on an amino acid supplement as well as aloe vera juice.

he continues epsom salt baths and we dont know if they help.

 

we had him on the bontech supps and a probiotic for the 3 months prior to the appt but he didnt feel they seemed worthwhile and would only maybe help once we really found out what was going on inside. After 3 months on bontech supps I have to say there was no change in tics. It is hard to know though if things would be worse without the supps ? its the million $ question with everything we try, He also raised the PANDAs question. I didnt get a chance to ask him could it be pandas though if we have a family history of tics ??

 

meanwhile we continue to cut ALL dairy and gluten and artificial flavours, colours, additive etc. We are near enough eating Paleo - with a few additions and are slowly working our way towards the GAPS diet as i discussed in a previous post. Not easy however with 3 children and a busy lifestyle.

 

again we havent really noticed a change ( perhaps only an increase) with the modified diet.

again....what would his symptoms be like though if we hadnt modified it ?

currently his only tics are eye blinking and lip puckering but as they are CONSTANT i consider it to be severe. 6 months now on the blinking with no waning periods. It concerns me greatly as it is so obvious and has been the first time people have noticed something and queried it etc.

 

meanwhile my husband has done a lot of online research and has come to think that gene testing for the MTHFR mutation would be another good step. After arguing with 3 GPs last week he finally got a referral to have the test done. The GPs all felt it a waste of time as it is a controversial test and the results wont ' tell you anything' . my husband feels it will begin to paint a picture of how his body is methylating and that this is important. I havent kept up with his research so a lot I dont understand.

 

other than the above we havent done much else. My son has seen his chiro who is starting to specialise in cranio sacral work at present and she is assessing him weekly. I also have an acupuncturist and homeopath ready to jump in and help if we choose to. I just feel doing everything at once wont be helpful as we cant monitor effectiveness that way. I do feel very anxious to find SOMETHING that will help though as we are growing weary of the no light at the end of the tunnel aspect - which also gets very expensive.

we have a referral to a neurologist but feel like that is a low priority as it will only confirm what we know and the only option he will present is medication which we dont want to look at.,

 

i would love your input as to what else you would be doing ? which path would you pick next out of the MANY options, are we missing something major - I would love to think we have missed a big piece of the puzzle that will actually make a difference ? i find the trial and error with supplements very overwhelming in terms of what to try/how long for/in what combinations etc so we havent really gone too far down that path.

 

we have increasing attentional difficulties with my son also, as well as teeth grinding at night, bed wetting and mild anxiety. these all seem to be worsening also. He is 7 next week so I just worry that we are heading into the 'worsening' period and that there is nothing we can do.

 

i really really appreciate your thoughts and input and would love any suggestions you may have?
thanks so much.

 

 

 

 

 

 

[cara615]

Hi, i started on your journey this past May. We got a dx of TS/OCD/ADHD and anxiety. We went straight to a holistic MD. We tested for food sensitivities. We had to remove gluten, dairy and corn. We also have a methylation issue and are supplementing with a methyl B complex. We also give NAC (N-Acetyl Cystiene) 1200mgs a day to help with detox (something that doesn't happen when you don't methylate properly. We give strong probiotics (25bill) as well.

 

One thing you may be missing is a candida issue. Looks like you are on the right diet to kill some candida. We went low sugar and removed all yeast promoting foods (vingegar, etc). We gave grapefruit seed extract 4 drops in the AM and 4 drops in the PM for 6 weeks. We saw some die off and tried to help the detox process when that happened but we saw great improvement with the GSE for candida.

 

We are also awaiting results of a stool test and I think that will show A LOT!!! Bacterial infections could be the culprit too. I say this because we thought we were dealing with TS however I am exploring PANDAS now because my son was pretty close to tic free with all the diet changes and supps but in the last 2 weeks his tics have skyrocketed and we got a postive STREP test!

 

But I just wanted to let you know that our son will be 6 in Dec and he has had vocals for over 1.5 years and motors for about a year. They were mild and would come and go and completely disappear for months at a time - until this past April. This past April they got SEVERE and debilitating and that is when we got our diagnosis and sought holistic treatment.

 

Now we may be on a different path to resolution, but resolution is what it will be in the end!!!

[zinto]

Thanks so much for your response .

So you have found those modifications to be of benefit enough to continue with ? We just find nothing we have tried has made any noticeable difference and the merry go round just keeps going - it is very hard to know what to try and how long for .

How did you find out your son had a methylation problem ? Was that bloods ?

Our ED has initially just focussed on strep but we wish he would look at other things too to save time. I'm still unclear as to whether or not PANDAS can have genetic roots and run in families or is it just TS .

Please let me know how your stool testing goes and what you do from here . Best of luck .

Does anyone else have any advice / experience to share on any of this ?

[cara615]

The changes we made with diet are meant to be long term. Gut healing takes a long time and immediate results do not always show themselves. For us we removed gluten first. No improvement, then corn with slight improvement in ADHD behaviors. Then we killed yeast and got some more improvement but it wasn't lasting. Then we removed dairy and over night we saw dramatic improvement. OCD,ADHD and anxiety all gone. The tics that remained were barely even detectable. It stayed that way for more than 2 months until we got a positive STREP test.

 

So whether its PANDAS or genetic TS, I do believe that diet has a lot to do with it because of the gut/brain connection. Heal the gut and the neuro symptoms will work themselves out.

 

As for methylation, we did a very expensive blood test called a NutraEval with our Holistic MD. It tested the levels of vitamins, minerals, amino acids, and many other things inside the blood. Based on the findings they can tell that my son had poor methylation and poor detoxification. That is why we supplement with the methyl B complex vitamins.

 

I hope this helps and even though we are now on antibiotics and exploring a PANDAS dx, we are still adhering strictly to our new clean diet and supplementing with the vitamins and amino acids that he needs.

[Pilbara]

I know you may have already done this, but did you get his hair analysis done? There seems to be a lot of kids with tics have heavy metal in their systems and their body lacks in their ability to detox naturally. For my son it is Aluminium, which does lodge in the brain and the central nervous system. We have got his tics down to a minimum at the moment and after a period of not being about to keep to routine over the school holidays, I can confirm that the supplements and detox he is on is definitely working. I have not gone down the diet path too much at the moment, other than cutting out any MSG and Corn Syrup in products which do worsen his tics. He is a bad eater so it's a slow process to change but I'll have to keep working on it.

We have done hair analysis, comprehensive blood work and stool testing. Other than high aluminium and uranium, my son was low in zinc and some other minerals. His routine consists of:

 

Chelatox - detox aluminium

Mineral essentials

CalmX - Magnesium and taurine

Bowel and Liver tonic

Gut Relief

Probiotics - pharmaceutical grade

The other thing I want to mention worth exploring is Irlen Syndrome. Sheila Roger's "Natural Treatment for Tics and Tourette's" book has it mentioned and it is what my son has. Often ADHD is misdiagnosed and can in fact be Irlen. It's also good for those that suffer light sensitivity. I'm a social worker and I never heard of it until this year, nor had his teachers, speech pathologist or occupational therapist. Yep he's seen a lot of people to try and find out why he wasn't learning to read and write. It's just another area of exploration for you. Here is a link for you: http://irlen.com/attention-deficit-disorder-addhd/

 

Good luck and don't give up looking and adjusting what you are doing. Your on the right track, just keep going.

[JaneFBH]

My DD has had many tics that have worsened over recent months. She is 12. She had an awful screaming tic recently. When I introduced 500 mg of Taurine daily, the screaming tics went down by about 90% seemingly overnight. She still has other tics, including eye blinking, but they have reduced at times.

 

She is gluten free, mostly dairy free and we too are doing our best to do the GAPS diet. Almost impossible for a picky 12 year old. I also do the Young Living essential oils regimen, and she takes a probiotic and digestive enzymes. After 3 months of , we are seeing some improvement. But some days are worse than others.

 

Question - does anyone recommend a good probiotic that comes in liquid form??? Or really good tasting chewable?

[Chemar]

we find Kefir to be the best natural probiotic.

We use the Lifeway brand as it is from A2 beta casein strain of cows. My son is not dairy intolerant but avoids it due to the Crohn's ...but finds this Lifeway kefir a major help to his health.

 

OIne can also get Kefir made from goat's milk as well as coconut milk kefir.

[jferinga]

This is what we have done/learned:

Since starting on this forum I have done much research. What I have learned/discovered so far, some are just strange facts learned or those that pointed me into a different direction.

 

I am a special education teacher and do not understand why PANDAS was never discussed in any of our classes. Ok so since the PANDAS diagnosis/suspicion I have learned that the NIH has several triggers listed on their site, strep was one.

• Based on special education experience working with children with psychiatric disorders and very familiar with autism I first noticed the broad overlap of symptoms and the fact that there was a little of this and that but not everything.
• Strep was researched first due to the existing research and knowledge about rheumatic fever and syndenham's chorea.
• Parents discuss "other" triggers/infections. Early on I had a list of 6-7 bacterial/viral infections that may contribute.
• Parents also mentioned on here that tests results were sometimes negative then positive. The doctors who gave best results were immunologists, infectious disease, and lyme doctors.
• Parents/doctors talkign about long term antibiotics, vitamins, low sugar diets, gluten/casin free diets, etc.
• Inflamation is an issue.
• When we tested we were negative on everything except mycoplasma. Positive strep in 2011 with an addition 6 months of pneumonia/ear infections.
• Researching strep: there are 7 types (strains) I found with multiple variations of each. Strep A-G. Strep may cause ear infections and upper respiratory infections, depending on the strain. Doctors test for Strep A mainly.
• Mycoplasma causes upper/lower repiratory infections and ear infections. Doctors do not routinely test for mycoplasma unless pneumonia is suspected. She had pneumonia follwed by multiple ear infections and abx did not take care of it for 6 months.
• Lots of research conducted and found research showing strep and mycoplasma and a list of 20+ other bacteria and viruses that are KNOWN to cause neuropsychiatric symptoms in people, adults and children.
• In another forum a parent posted research about immunizations and CDC statistics. In the article there was mentioned that immunizations and vacinations are contaminated with mycoplasma bacteria, approximately 55%+.
• I started checking mycoplasma. It is very hard to detect.
• Based on best doctors I came across research on chronic infections and mycoplasma and treatment types.
• I found research linking chronic infections and autism; or shall I say research showing many children with autism, 58% in one study, tested positive for one or another type of chronic infections. Many of these chronic infections are identicle that PANDAS parents are reporting also.
• I thought back to the private school I taught at for children with autism. Many parents used a GFCF diets and talked about success. I learned that gluetin and casin cause inflamation and sugar feed the bacteria and viruses.
• In doctor consults, PANDAS friendly doctors, that supplements (vitamins), low sugar diets, Paleo diets, and other dietary modification are used along with propylaxis abx. This was very familiar to treatments of intracellular infections.
• Intracellular infection research showed that with one time abx treatments there is 100% relapse, other were not as high although above 90% relapse. One doctor, in his study, demonstrated 6 consecutive 6-week treatments were needed to get relapse down to 18%. Also noted, abx had to be alternated since with intracellular infections there are several areas in the cells that the abx may accumulate in and each abx is different.

[Cj60]

Thanks for the post!!

 

My children have stopped the prescribed vaccination schedule since we started dealing with tic issues. I'm considering getting them back on a very slow, one at a time schedule. But this makes me very nervous:

 

• In another forum a parent posted research about immunizations and CDC statistics. In the article there was mentioned that immunizations and vacinations are contaminated with mycoplasma bacteria, approximately 55%+.

Can you provide the citation?

Thanks,

Chris