Jump to content
ACN Latitudes Forums

Newbie on PANDAS


jewels

Recommended Posts

Hello all,

 

I'm new here, but have been on the tourettes forum since my dd exploded with sudden tics at the age of 4, less than a week after a vaccine. I live in the UK, and PANDAS is not very common or understood here.

 

We have at last found a dr here, and most importantly, treatment that is working.

 

She has been exploding with tics, regression, sleepless nights etc, for over 3 years. The drs suggested medication for the tics, but we declined, as we could see a connection with viruses/illness and a high temp. with every onset.

 

In Sept 09, she developed a kidney infection, and given high dose abx, followed by a daily abx (keflex). Within days the tics not only went, but all the other issues stopped.

 

A few days ago, she suddenly developed a high temp. 39.7 and we saw a return of tics etc. Dr swabbed for strep., and confirmed throat infection, and both ears infected. Taken off keflex and started high dose of Augmentin. Tics and behaviour improved within days. Our Dr can now see the change in her when given abx.

 

I am now a 100% convinced of this condition, because of the dramatic change in our little girl.

 

I would like to add some thoughts on this condition, to see if anyone else has seen or experienced the following,

 

Our dd reacts to probiotics and nystatin - (symptoms explode) could this be a reaction to the toxins when yeast dies off?

 

Gut issues - we think she has a leaky gut - Immune problems - always catching viruses and constant throat/ear infections. (Dairy/gluten/soya free)

 

Could I ask if any mum with a PANDAS child is RH neg. blood group, and did you have a anti D injection while pregnant.

 

Sorry this is so long, but how many children have had chicken pox badly, with a high temp. etc. ?

 

Thanks Jules

Link to comment
Share on other sites

Jules,

 

Yes, you can have a die-off reaction when introducing probiotics and nystatin, or anything that can kill yeast. Curious what symptoms, though, as I think increase in yeast symptoms, not necessarily PANDAS symptoms, is what you get with those toxins. Personally, I am used to extreme hunger and digestive upset with the yeast die-off. But, the list of yeast and PANDAS symptoms have a lot of similarities, so that's just another aspect that makes it all so puzzling to figure out. If the die-off reaction is too much, you can consider decreasing dose, or suspending for a day or two, just taking it slower. Also, I take a teaspoon of psyllium husk powder in the morning, which is supposed to help with the detox of the dead yeast and reduce those die-off reactions.

 

The leaky gut / yeast issue / food allergies, is a common combination, if you haven't heard, and treating the yeast and the food allergies simultaneously is best. If you just treat yeast, but keep eating allergic foods, you'll have the irritation that will feed the yeast and other digestive issues. If you just treat the food allergies, the yeast and leaky gut will just cause the food allergies again. It can be tough! I have been battling that one for a number of years now and finally with the anti-yeast drugs I am making real progress.

 

Michael

Link to comment
Share on other sites

Hello

 

Glad to hear your getting good results at last.

 

No, to both your questions re blood group and chicken pox but have you had an immunological work up done on your dd. Many kids come back with low numbers. That could account for all the infections. The probiotic and nystatin sound like a die off reaction, can't think what else that might be. Other folks may have better ideas on that one.

 

We are in the US but from the UK. Do you mind me asking what dr you have found that is willing to believe and treat PANDAS? I am conccerned that should we return to Uk we won't be able to find the help that we get here....

 

Thanks, Dut.

Link to comment
Share on other sites

Firstly, thankyou for all the suggestions and comments.

 

We have has issues with dd's gut prior to the pandas, bloated upset tummy, blood in stools, excessive flatulance. We were advised by dr to remove dairy. She improved alittle but all her tummy problems stopped about 6 weeks after going dairy/gluten free. Her ped suspects she could be a celiac. and we are thinking of trying gluten again for six weeks for a blood test confirmation once her kidney infection is resolved.

 

With regards to having blood tests, well in the UK they look at you like you've come from another planet when you start asking for them! It was only in September when she became ill and started to tic/fever etc that her Ped gave us a hospital "passport" to bring her for swabs and other tests when she started to show signs of infection. Her bloods came back and the dr said she was showing immune problems from her blood count. A urine test confirmed a proteous infection in her kidney, and after an ultrasound they found waste matter collecting in one of her kidneys. This is how we managed to obtain prophylactic abx.

 

Every time she has a strep infection we have swabs taken, and we are just told that yes it is strep, but never given any levels etc. They do not offer any tests post infection.

 

When we try any form of probiotics or nystatin (which I dearly need to now because of the daily abx) we have a horrible reaction. I have tried the slow approach but she is very sensitive. However I've not tried them while on abx. The crohns connection is intresting, and we will mention this to dr.

 

 

To dut, If you do come back to the UK, then I would suggest treatment at Brighton Childrens Hospital. Our ped. wrote down PANDAS? the very first time we saw him over three years ago, but he does keep reminding us that it is just a theory> however he is only one of a few drs that is aware of PANDAS. Let me know if you want our peds name. (wish I lived in the US)

 

It was information from this forum that has helped us discuss with our dr what type of abx to use, and keflex seemed to do a great job until she started with the next infection and needed to have a high dose bacterial fighting abx. The great news is that the drs at the hospital can see the amazing results we are having, and I hope that they will treat other children in the UK like this too.

 

We have another app in four weeks time, and I've armed myself with every PANDAS report and test that I've found to give to our ped. I've even thought about contacting Dr K to speak to our Dr regarding IVIG, but at the moment she is coping very well, and I don't want to shock our health service to much, as we have now turned a corner.

 

Thanks for all the help

 

Jules

Link to comment
Share on other sites

Cheers for the dr info.

 

On the probiotic front, have you tried saccharomyces boulardii? Did you get the same bad reaction? If you haven't tried it, it is a good yeast that competes with bad yeast and is supposed to be very good at keeping candida at bay. Just wondered if maybe your dd would react less to that than bacteria type probiotics.

 

Also, most probiotics are animal strains. Pharmax do human strain ones Pharmax HLC acidophilus and bifidus.. she may react less badly to those. Also are you using dairy free/gluten free probiotics? (you probably are but thought it worth a mention in case).

Link to comment
Share on other sites

Sorry, I also meant to add that Dr. Trifiletti here in the US, mentioned that he was aware of some Drs in the UK. He didn't give me names but you could always contact him if you need to, he posts to this board.

Link to comment
Share on other sites

Hi Dut,

 

I have Saccharomyces boulardii in the fridge, ready for the upset tummy that we see after certain abx. She seems fine on these - no reactions. Whould you know if I can give them to her whilst still on abx, or do I need to finish the course first.

 

I did forget to tell you just in case you come back here. We also used a private allergy hospital who follow DAN procedures and they carry out tests that you cannot get on the NHS. It's quite expensive and they did dx her with PITANDS. They also sent stool samples to Great Plains (results came back with quite a few issues). We had lots of allergy testing there and allergy treatments. The hospital is Breakspear Medical, Hemel Hempstead (outskirts of London) They also stock quality supplements.

 

I'm going to try low dose probiotics again, wish me luck.

 

 

 

The last time we saw our ped he said that he felt that children were genetically predisposed to this condition. Have any other drs said the same to other parents?

 

Thanks Jules

Link to comment
Share on other sites

Hi Dut,

 

I have Saccharomyces boulardii in the fridge, ready for the upset tummy that we see after certain abx. She seems fine on these - no reactions. Whould you know if I can give them to her whilst still on abx, or do I need to finish the course first.

 

I did forget to tell you just in case you come back here. We also used a private allergy hospital who follow DAN procedures and they carry out tests that you cannot get on the NHS. It's quite expensive and they did dx her with PITANDS. They also sent stool samples to Great Plains (results came back with quite a few issues). We had lots of allergy testing there and allergy treatments. The hospital is Breakspear Medical, Hemel Hempstead (outskirts of London) They also stock quality supplements.

 

I'm going to try low dose probiotics again, wish me luck.

 

 

 

The last time we saw our ped he said that he felt that children were genetically predisposed to this condition. Have any other drs said the same to other parents?

 

Thanks Jules

Link to comment
Share on other sites

yeh, you can use the s.boulardii at the same time 'cos it's a yeast and so the abx doesn't kill it. I would also give the pharmax probiotics a go... u can get them online. They are made in the UK and may be easier 'cos human strain.

 

As for genetic link, yeh I believe so. So many families have multiple siblings with this.. it could be super virulent strains too but I believe there are probably issues with strep clearance that run in families, as there seem to be family histories of RF etc... but who knows. e.g. our family has RF, Kawasaki's, scarlet fever and peritonsillar abscesses and now PANDAS and I think maybe PANDAS on at least 1 side of the family a generation back but milder.....

Link to comment
Share on other sites

Thanks for the info Dut,

 

We also have a family history of autoimmune disorders on both sides. I will order the probiotics asap. On a more positive note our dd had over a year of very good health before the kidney infection. I supplemented her with natural antiviral/bacterials, vits, etc and we also used DMG. I was just looking back at that years diary, and at the same time noticed an article that DMG is an immune regulator. She was not on any abx and only had one mild tic/changed mood event. Some of the abx used for PANDAS regulates the immune system also. Maybe it could be a start for some who are struggling to get abx like we did.

 

I'll try and post all the UK health news on this site, that I think may be of help. I know that the uk did a trial on IVIG and the results were positive with all 20 children not requiring any more treatment. Due to only a single trial being carried out and also the cost of treatment, as yet they only treat PANDAS as they would a child with tourettes.

 

Jules

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...