Your thoughts ...

[zinto]

Hi everyone ,

It's been a while since I checked in but I am very keen to get some of your thoughts on the treatment protocol my 7 year old son has been given by our environmental doctor .

Just a reminder of the background first - he has most likely for genetically inherited TS - both verbal and motor tics for 2 years now as well as some anxiety issues. Yet to be diagnosed officially .

We approached an environmental doctor who suspected pandas and sent a stool sample for microbial (?) faecal testing to see what the balance of bugs etc was in my sons gut .

No pandas ( according to result) , no yeast issues , no anything - but a particularly imbalanced bug ratio - more of the bad bugs and less of the good . The doc feels this is a major contributor to neurological issues and has set about rebalancing the bugs with some treatment.

This includes :

Daily aloe Vera juice

Daily PWP amino acids

multaflor( E. coli ) for 20 doses

Bioceuticals baby biotic bifidum for 2 bottles

Nutrition care lactobac for 1 bottle

Metronidazole for 10 days.

 

And then we are to report back in a few weeks.

As well as this we do gluten and dairy free diet as well as no colours / flavors / preservatives and he has daily Epsom salt baths.

 

I don't know the ins and outs of those medications but the doc seemed to think a few weeks on it and we should see a difference .

So far all i can say is 2 weeks into it he is worse rather than better. I am very anxious about it as I just feel that after all this time and $$ we are getting further from an answer .

 

Would anyone think that on those treatments it would be expected to get worse for a while first ? Is this normal ?

Does anyone else know anything we should / shouldn't be taking in addition ?

Would really really appreciate any and all insight .

Many thanks

[Pilbara]

I can't comment on the particular recommendations that you have been given. Just know that the needs of every child are different, it's also a little trial and error. Importantly there are no quick fixes. It takes time for any supplements to work. I don't understand your particular items, but the brain/gut connection is very important for a whole range of health issues. I presume this is the focus from your doctor.

Make sure you also consider any environmental triggers, just in case they may still be present. Just give it some time and then keep reviewing your progress and if needed you can look at other things that may be required. There may be other nutritional items that benefit tics, but I don't want to confuse you or have you doubt what has currently been recommended. The increase in tics may simply be the peaking of a waxing period, try not to get frustrated because things seem to be getting worse. It's to soon to see any benefit yet, so hang in there.

[mar]

Continue doing what u are doing . You are doing great and u will not see something in 2 weeks. It took months. Their bodies need to adjust. Getting rid of dyes and preservatives is so good. I also did salt bathes. I did dairy and gluten free Also at the time. You will see set backs and wonder but keep going it does help in the long run. This was me when my boy was 7 and he is now 11 and is doing great!!! Not sure if he is taking probiotics but definitely through that in. It could be a long haul but it does help. In the beginning there were so many setbacks with tics and everything . Every child is different but the healthy diet and salt baths helped my boy and his tics are not here!

Mar

[Chemar]

Hi

Just one question....as far as I know, a fecal test alone cannot be used to exclude a PANDAS/PANS diagnosis?

Did the doctor have any blood or other testing done for this?

 

Restoring good intestinal flora health is vital nomatter the condition imo....but I would still request the other tests related to PANDAS to be absolutely sure.

You can ask on our PANS forum about this.

[zinto]

Thanks all for the reassurance .

I know I won't get fast results but the diet restrictions and extra supplements etc are such a lot of effort and work - and the diet part has been for over a year now but no real change in symptoms . It gets disheartening and I guess I'm just wondering how long do we wait before we try something else and what would it be ? Feels like a puzzle that can never be solved . He has just started at a new school and we have mined house so again I'm questioning triggers - but they are so hard to narrow down and nothing really stands out .

Chemar yes he had blood tests for pandas too and it has been ruled out .

I just want something to work . To give us some hope . Predominant it is severe eye blinking and it is just non stop and has stuck around for almost a year now and is worsening .

I wish there was something I knew would help with just that alone.

Does anyone think the treatment he is on might be the cause of worsening symptoms ? Do they look like things that might cause initial worsening or are they too unfamiliar to you to know ?

I really really appreciate the feedback thank you all so much

[msimon3]

Based on your story, I would have thought that the symptoms would initially worsen as well.

 

Two major things that stand out to me in your statement above:

- The motor/vocal tics and anxiety began two years ago

- These tics are getting worse after taking Metronidazole for 10 days

 

It is plausible to consider your son's symptoms as caused by infection. Worsening symptoms may be due to the increase die off of bacteria from the antibiotic use, and the increase of immunological activity as a result. If the worsening of symptoms correlates to the use of antibiotics, then the cause might be a process called the Herxheimer reaction or "herx". Ironically, these worsening symptoms are actually helpful, as they can be used to help understand and confirm what causes the tics in the first place. Are any other symptoms worsening, for example any GI / diarrhea, or it is just the tics?

 

I am also curious about the exclusion of PANS by means of fecal analysis -- there may be some validity there, but it seems as if most people are looking at antibodies in the blood to assess the possibility of PANS.

 

What were the "bad bugs"? Metronidazole is a pretty strong and broad spectrum antibiotic. You see it used for C. diff. or anaerobic infections. It is frequently used for Lyme disease, because it is effective at destroying the cyst forms of the bacteria.

[Chemar]

Eye tics are often worsened by allergies to dairy products (lactose and/or casein) so if you have not tried eliminating dairy to see if things improve, you may consider that

BUT

I agree you may be seeing herxing after the abx so would wait a bit before doing dairy elimination so you get a more clear result on whether or not that helps

[Cj60]

Our environmental dr. was a little different. He took things one step at a time. That is, one supplement at a time in order to be able to accurately monitor reactions. Your son has been given a barrage of simultaneous treatments which might make it difficult to see what's effective and what's not, or even what specifically might be making things worse so you can determine whehter there's herxing or just a negative reaction.