PANDAS confusion

[Sunshine]

Hello everyone...

 

I'm feeling selfish, and apologetic, as I have been reading your posts daily, yet barely have the strength to respond. Now I turn to you for help. I do feel that I can help my son, and hopefully later help someone else.

 

I need help and support, and need non-medical opinions about my son. I have written before about my sweetheart, so here's a brief re-cap.

 

He had a sudden onset of tic symptoms one day last March (10 days after being sick). They went away within 3 weeks. They resurfaced suddenly this August, went away, and resurfaced mildly when he started school. Tics change every few weeks, and include a vocal tic sound. Things got worse for my son this past Christmas, so I found this board, and tested him for strep. It was positive, so he did a round of Amoxycillin. He also had a remedy by a naturopath. He improved, but got worse once off the antibiotics. We saw the first signs of OCD (smelled his hands) emerge. Another swab produced a positive result. He then started Zithromax and probiotics. His behaviours improved, and the OCD stopped. However, same story: things are worse off the antibiotics (however, there's not an immensely drastic difference). He has, of course, tested positive again (he is a carrier), and the doctor wants to try Clyndamyacin (may erradicate strep in a carrier). Not surprisigly, the doctor is not convinced that my son's tics are from the strep, as it's not presently active. He's already mentioning drugs for down the road. I'm mad!

 

We have made great efforts to improve his health, and haven't seen hugely noticeable results yet. Brief summary:

 

We have had no screens since Xmas.

He takes multi vitamins, vitamin C, probiotic, calcium/magnesium, zinc, B6, B12, and we just started digestive enzymes.

He has epsom salt baths.

No colours/flavours/preservatives.

 

He will have IgG testing early April, as well as a urine test for yeast and tests for metals/vitamins.

 

Here's my big question to all PANDAS families:

 

 

Can he be a carrier, and not have such big problems with tics/OCD/behaviour if the rest of his issues are addressed (allergies, yeast, metals...)?

 

 

I hate to do another round of antibiotics, if it's not necessary. I am so inspired by Alison's story, and I believe Heather and Ronnas have had success too. This is my only ray of hope. I truly believe after reading posts for hours on end that PANDAS and TS are able to be managed naturally. I am losing my little boy, and I want him back!!

 

Please help!!

[Giselle]

I'm so glad you are treating with probiotics as well. I'm not super up on PANDAS and are only now doing the titres but he's had antibiotics while he's had tics and we didn't see any improvement in the tics while he was taking them so don't think so but am going to rule it out and also look at other viruses. I really think that you'll get a much better picture doing what you are about to do - a delayed food allergy test will really illuminate things and most importantly - the yeast test I believe will really help out. If he's been on antibiotics and having these issues I would bet my bottom dollar he has yeastie beasties. You are doing the right stuff and just wanted to give you a hug regarding the doctor - a lot of times it's news to them and they are a little reluctant to "cross over" to the more natural method - but stick with it. Sounds like you are getting your tests done which is way ahead of the game for most docs! Good luck and please keep us posted!

Giselle

[Chemar]

Sunshine

because we never dealt with PANDAS (my son has never even had a strep infection and tested negative when we had titres done) I cant comment on the specific questions you have asked re PANDAS

however, I seem to remember that PROPHYLACTIC use of antibiotics is needed in PANDAS and this can be a long term thing. The important thing is to keep up the probiotics!

 

 

 

I just want to encourage you not to give up hope. Sometimes it seems like a convoluted path as you begin to work through the issues, but it is worth continuing. Not everyone has the same triggers for tics, and so just because something has worked for someone else doesnt mean it will for you....but you will never know if you dont keep looking.

 

And, from all you have posted, it sounds to me like a PANDAS case that needs a longer antibiotic treatment

 

I hope Ronna will be by again soon, and I know Alison pops in frequently....they just know so much more about PANDAS,

 

Just keep taking it one step at a time.

 

And do remember, you havent lost your little boy....he is just going through something hard....but he is still the precious son you love so much and that is what is most important.

 

 

((((SUNSHINE & SON))))

[kim]

Sunshine,

 

Perhaps by supplementing deficiencies, and removing things that are taxing his immune system, your son will lose the strep that's lingering somewhere.

 

My youngest son (and probably oldest, if I could remember that far back) was said to be a carrier. Repeated positive swabs, with none of the visable symptoms.

 

All of a sudden, the swabs started coming back negative. Is he no longer a carrier? I don't know.

 

I was not giving him any supplements when this happened, so I have to assume, that his body was able to overcome it, on it's own. He did however, have white spots constantly with negative swabs, prior to supplementing, that the Ped finally said was probably something an ENT should check out. Since starting Bonnie's vitamins, and recently the addition of extra vitamin C, those spots have disappeared.

 

Thoughts and prayers are with you.

 

Kim

[Ronnas]

Hi there,

 

We also had a very similar experience with our son worsening once off the antibiotics. It is hard to believe but we have been dealing with all of this for 5 years and let me tell you with time all of it is just so much easier to deal with. We do still have our ups and downs but nothing compared to a few years ago. A turning point for our son was switching to clindamycin three years ago. He has been on the clindamycin approximately 5 times since then with good results. Having said that we have also treated for yeast, removed milk from his diet and corn, eggs and chocolate to a certain extent (milk is the biggest trigger though), we use essential fatty acids which help ALOT and do use Bonnie's vitamins (though he does not like to take these so we don't fight with him over it).

 

If your doctor is willing I would give the clindamycin a try. It was once we did a trial of clindamycin that we finally did not notice a set back once off the antibiotics.

 

For some reason November to February is always a difficult time for my son. This year we kept him on clindamycin throughout this time and he is doing very well right now...no tics, and MELLOW.........so nice!!!

 

Take Care.

Ronna

[Sunshine]

THANK YOU EVERYONE FOR RESPONDING!!!!!!! After reading your replies tonight, I feel much more optimistic than yesterday! My worries, and emotions seem to wax and wane, just like the tics! I can't tell you how much I appreciate your kind and helpful words!

 

Giselle, I agree with you on the yeast issue. I read one of your old postings the other day that mentioned the 'fog', and it strikes a chord with me. I wonder if being under anaesthetic several times could contribute to a yeast problem. Definitely he has been on antibiotics (without probiotics) plenty of times in his short life.

 

Chemar, I never thought about the duration of antibiotics. Zithromax was only a 5 day course... Hmm....

I think Clyndamiacin is a 10 day course. I do have reservations about long term use, despite the success stories. There are pros and cons to everything!

 

Kim, your note confirmed my thoughts. I was once identifed as a carrier, yet my recent throat swab came up negative. The entire family battled the same mutated strep that seems to plague my son. I took two rounds of antibiotics to clear the strep, felt weak for the next month, tested positive again, but I refused to take a third course of antibiotics. Yet a year and a half later, I am no longer a carrier. Interesting.

 

Ronna, I am so thankful to hear from you!! I have posted a few times hoping to connect, but I assumed that you were no longer active. I am thrilled to hear how well your son is doing!!!! I find it interesting that your son has a harder time Nov. - Feb., as my son was great last spring/summer. I wonder why? I read an old post of yours that Clyndamiacin may not affect yeast like other antibiotics. We will give it a try, but I would first like to have his yeast tested to see what we're dealing with.

 

We have an appointment tomorrow with a new naturopath, who is open to running the necessary tests (20 minute phone interview... she sounds promising!).

 

Thank you again for everything!

[Sunshine]

We've hit the jackpot!! We met with the new naturopath today, and she is fantastic!!

 

The naturopath will run all the tests, and has set up a wonderful supplement plan for my little boy. Once the necessary tests are done, we can make changes. It's expensive, but there's no price tag on my son's health!

 

She even talked about a specific plan (developed in Europe) for addressing the strep naturally to avoid prophylactic use of antibiotics. Of course, she provided no details today, as we need to proceed slowly and address other issues first. I will post more on this thread as I find out.

 

Her supplements seem to be of excellent quality, and are mostly from Europe. She has added cod liver oil to my son's supplement plan, and changed others to liquid form/increased quantity. She also added a liquid detox for his liver and kidneys. It's a slow, long road, but hopefully every little change will add up to a healthier boy.

 

Today is a good day... we needed it!

 

Cheers!

[ad_ccl]

Hi Sunshine,

 

Sorry to not reply sooner - we have had a crazy few days with the baby being quite sick. Anyway...your experience sounds so much like mine was early one - improving on antibiotics and deteriorating off antibiotics. Ultimately, I asked to remain on them prophylactically - so we have been on them prophylactically for just over a year - and prior to that on and off them for 4-5 months, mostly on them. I do think we ultimately exchanged the strep infection to a yeast problem, which is why ultimately he started to deteriorate even on the antibiotics prior to going to the prophylactic dose. For us - the IGG testing - then removal of casein and gluten, was when we saw the first significant improvement, within the week we saw a significant reduction of tics - that was a year past January. He still had ups and downs but nothing like the first few months. The next big step of improvement has been since this past December when we increased and changed the probiotics we were using to treat the yeast. He has being doing amazing since then. He had a cold early this week, full on stuffy nose etc - NO TICS, no emotional lability, I used to know he was fighting something as he would have subtle tics emerge, I was so surprised ( pleasantly) when one morning he was flushed and had a terrible cold. I do think the key to PANDAS - is the IMMUNE SYSTEM, which is why it is part of the title! The immune system is not just about strep - but all the other things that could be bothering the immune system, including allergies, yeasts etc. So - to answer your question I would think he could be a carrier and not have such big issues if the rest of his body is in check. Doris Rapp talks about the barrel theory - your immune system is like a barrel, and it can take on so many things and then finally it will overflow - so prior to the strep causing the barrel to fill up and overflow the foods etc were not such a problem for my son, but now that his barrel was full to the top we needed to work at reducing some of those things filling up his barrel. She also talks about how sometimes an infection is the equivalent to a hole in the barrel, so even if it was not already full, it starts to leak. I like the analogy. Now my son has been able to manage wheat without any tics and the pizza last week with no tics - this shows me his barrel is not very full so these things are not causing it to overflow. Simple analogy but I find it powerful.

 

I hope I have answered some questions - I am running on not very much sleep - but did want to respond. I know how much I waited and hoped to hear stories from others as to how well their kids were doing as it gave me such hope. I do hope that our story gives you hope.

 

Just as a brief rundown - things we have done for our PANDAS son

 

removed all screens - replaced the tv with an LCD - limited his use of this, but now he has no limits and no tics while watching - in January he saw a movie on a regular tv with no reaction

 

started supplements - originally he was on lots - B complex, cal, mag, zinc, fish oil, l-taurine, vit C, multi, (can't remember the rest.)

We have reduced his supplements significantly - takes muli, b complex, 1 fish oil ( used to be 8), l-taurine in the morning and then a probiotic at lunch and at dinner.

 

tested for pyroloria - which he was positive for - had supplemented more zinc originally - he eventually rebelled against all the supplements so we eased up on them with no ill effect - he had rebelled a few times before and we would ease up and tics would come back within a few days to a week and he would ask to go back on the vitamins. He has been on the reduced amount since probably September.

 

tested for metal - no issues

 

tested IGG - positive for casein, gluten, eggs, soy, - went on a very restricted diet eliminating all of the foods - tons of work but soooo worth it.

 

tested - OAT test - high in yeast,

 

treated yeast more aggressively

 

My son as I have said is doing amazing - tic free - 100% most of the time, when there are tics, they are so subtle that no one else would notice them - He has a much better diet now than I could have ever imagined - he was such a picky eater. He looks so healthy now. He is well rounded and does not seem to be worse off as a result of the PANDAS - I would have to say he is better off - as I have said many times, he is now able to reach his real potential - we uncovered things we would not have had we not had to go on this journey - and not just things related to him but also his brothers.

 

Try and keep as positive as you can - I know it is hard at times - I also felt like I was losing my son to this horrible illness - I hated everything about it and was not good at just accepting it. My advise is to keep researching and fighting for what you think is right for your son. You will put your puzzle together - slowly but surely and it will be so worth the time and effort.

 

Good luck tomorrow with the naturopath - looking forward to an update.

 

Ronna - so nice to "see" you - so glad Kurt has had a good winter - with the new baby you must be so glad of that. I was interested to see you put him back on prophylactic antibiotics - we are at the point of considering going off the antibiotics this summer - I am scared to do it but feel it does make sense. I just have such a fear of a relapse like his original onset - and probably an irrational fear of him not get better if that happens - although I know there has been no permanent damage to the basal ganglia from all I can tell as he has been tic free more often than not.

[kim]

Sunshine,

 

I'm so happy to hear your good news! When you're in the throws of the what feels like a crisis, someone who believes in alternatives, with the medical knowledge to boot is such a wonderful thing.

 

Alison,

 

Could you please tell me what kind of metals test you did? Also, is your son still caesin free for the most part?

[Ronnas]

Sunshine: It sounds like you are on the right track. Your son is lucky to have you! My goodness it is a rollar coaster ride! I do read the posts just about everyday and try to reply when I can...I am pretty busy with the kids and just life in general (I am an overachieving volunteer addict and it keeps me busy ).

 

Allison, hi there! We did put Kurt back on antibiotics in January. Everyone in our family was sick off and on for about 6- 8 weeks...it was constant for awhile. We had the flu and STREP! My 7 year old son and I both had strep. My son's has cleared up...just this week I became sick again...yep, strep of all things so I am on my 2nd go with antibiotics. Anyways, interestingly Kurt was the only one to NOT get sick with the flu or the step...however, he did have an increase in tics, and some behavioral stuff...we stepped up the supplements, more strict with diet, and the antibiotics and he seems to have weathered the winter not too bad. Though for me I was just exhausted for awhile and quite concerned when Kurt's tics worsened with a few new ones thrown in...however, like I said in the other post my worries are so much less than they use to be because I knew with time they would subside and to be patient.

 

It has never been the tics that have bothered me the most...more the emotional liability...he is MELLOW right now and it is so nice to hear, "ok mom" instead of crying and complaining about EVERYTHING from wearing mitts to going to bed, etc...anyways, take care everyone...although I don't post as much I am around! Ronna

[ad_ccl]

Hi Kim,

 

We did a hair test for metals.

 

Regarding casein - yes he is 100% off, or as close as we can get. He was allowed the pizza at pizza day - but that was an exception. At home it is 100% all the time. At hockey practice he sometimes gets a snack with milk ingredients which we now allow - we did not for a long time. I do a lot of baking, and when he does get bread it is always milk free. He did admit the other day that on a class trip he had a hot chocolate - and we saw no reaction. So, I cannot prevent the odd time but am happy that he is managing the odd milk exposure fine. At home he drinks goats milk. I really do think the yeast issue has made a huge difference in how he is managing the food sensitivities.

Even now when it is clear he is starting to come down with an illness there are no tics and no emotional lability. I talked to my doctor today and we are talking about taking him off the antibiotics at the end of the school year and seeing how he does.

 

Marie - hang in there. Remember this will pass as well. Wishing for you all that it passes quickly, although it is nice that it is not bothering your son too much.

[kim]

Alison,

 

Thanks for the reply and I will have my fingers crossed that your trial with antibiotic free....goes well!

 

Kim

[laurie 39]

Hi there,

 

We also had a very similar experience with our son worsening once off the antibiotics. It is hard to believe but we have been dealing with all of this for 5 years and let me tell you with time all of it is just so much easier to deal with. We do still have our ups and downs but nothing compared to a few years ago. A turning point for our son was switching to clindamycin three years ago. He has been on the clindamycin approximately 5 times since then with good results. Having said that we have also treated for yeast, removed milk from his diet and corn, eggs and chocolate to a certain extent (milk is the biggest trigger though), we use essential fatty acids which help ALOT and do use Bonnie's vitamins (though he does not like to take these so we don't fight with him over it).

 

If your doctor is willing I would give the clindamycin a try. It was once we did a trial of clindamycin that we finally did not notice a set back once off the antibiotics.

 

For some reason November to February is always a difficult time for my son. This year we kept him on clindamycin throughout this time and he is doing very well right now...no tics, and MELLOW.........so nice!!!

 

Take Care.

Ronna

 

Ronna, Hi there. We are currently being treated for Strep (my son and I), and are having the full spectrum of blood tests run for Strep soon (any advise on when)?? My son (6yrs.) completely stopped tics after two days on amoxicillin(250mg x3day). I'm convinced this is probably Pandas. My questions for you (if you have a moment)....1. He has been taken off of milk and I wonder what to suppliment for his calcium/vitamin D, any suggestions? 2. Should the entire family have the Strep blood work done? - - - I'm also unable to find any info about carriers....will they keep re-infecting the rest of us in the household? 3. I've been reading the boards nonstop, but cannot find any info on kiddos that have been treated for strep, gotten off the course of antibiotics and 'recovered' from the tics (until next onset of Strep), is this even possible? 4. I guess what I'm asking in 3. is: has anyone successfully eradicated this stealth strep from their child's system successfully? I'm so sorry these are so many questions. I'm just anticipating a long road ahead of us (based on what I've been reading). I also wanted to say hi and thank you for being such an inspiration.

Laurie39

[laurie 39]

Hi there,

 

We also had a very similar experience with our son worsening once off the antibiotics. It is hard to believe but we have been dealing with all of this for 5 years and let me tell you with time all of it is just so much easier to deal with. We do still have our ups and downs but nothing compared to a few years ago. A turning point for our son was switching to clindamycin three years ago. He has been on the clindamycin approximately 5 times since then with good results. Having said that we have also treated for yeast, removed milk from his diet and corn, eggs and chocolate to a certain extent (milk is the biggest trigger though), we use essential fatty acids which help ALOT and do use Bonnie's vitamins (though he does not like to take these so we don't fight with him over it).

 

If your doctor is willing I would give the clindamycin a try. It was once we did a trial of clindamycin that we finally did not notice a set back once off the antibiotics.

 

For some reason November to February is always a difficult time for my son. This year we kept him on clindamycin throughout this time and he is doing very well right now...no tics, and MELLOW.........so nice!!!

 

Take Care.

Ronna

 

Ronna, Hi there. We are currently being treated for Strep (my son and I), and are having the full spectrum of blood tests run for Strep soon (any advise on when)?? My son (6yrs.) completely stopped tics after two days on amoxicillin(250mg x3day). I'm convinced this is probably Pandas. My questions for you (if you have a moment)....1. He has been taken off of milk and I wonder what to suppliment for his calcium/vitamin D, any suggestions? 2. Should the entire family have the Strep blood work done? - - - I'm also unable to find any info about carriers....will they keep re-infecting the rest of us in the household? 3. I've been reading the boards nonstop, but cannot find any info on kiddos that have been treated for strep, gotten off the course of antibiotics and 'recovered' from the tics (until next onset of Strep), is this even possible? 4. I guess what I'm asking in 3. is: has anyone successfully eradicated this stealth strep from their child's system successfully? I'm so sorry these are so many questions. I'm just anticipating a long road ahead of us (based on what I've been reading). I also wanted to say hi and thank you for being such an inspiration.

Laurie39

 

 

p.s....Chemar.....please, please jump in with any info...you are so very knowledgable. Any info is appreciated! Laurie39

[Sunshine]

Hi Laurie,

 

I just thought that I'd pop in and add a quick reply to your post, since I started this thread long ago.

 

Here are my thoughts on a few of your questions:

 

1. "Should the entire family have the Strep blood work done?"

- We had the entire family swabbed. Carriers can reinfect others, so it's important to treat all carriers. However, we did not check every one's blood levels. My PANDAS son was (or still is??) a carrier.

 

2. "I've been reading the boards nonstop, but cannot find any info on kiddos that have been treated for strep, gotten off the course of antibiotics and 'recovered' from the tics (until next onset of Strep), is this even possible? "

- We have taken a different approach than other PANDAS families. My son was treated with TONS of different antibiotics last Jan. to June. Since then, he has been on none. His naturopathic doctor wanted to try treating him without antibiotics, so we took her advice. It was REALLY hard at the beginning, but his progress has been REMARKABLE. It has been a VERY SLOW process, but he is doing AMAZINGLY well right now. I do believe that, in some cases, kids can be treated for the strep and recover from the tics.

 

Remember, antibiotics only fight 80% of the bacteria. It is up to one's body to fight the rest. No matter what approach you take, healing the immune system is imperative.

 

Feel free to PM me for more details.

 

Sunshine