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Hi All,

 

I used to post here many years ago....it was here where I found so much help, support, etc. Chemar, Claire, Kim, Mustang Carol, and Ronna along with many others helped me find my way during very dark times. I do still check in every once and a while (but I find the new format of threads difficult to follow - I much preferred the old way!). There is also so much more discussion about IVIG etc which was not discussed too much back then - I did ask our doctors about it and they would not even consider it in Canada at the time, same with the steroid boosts. There also seems to be more focus on OCD on the posts I read.... tics were the big issues for us.

My son was diagnosed at 6 with PANDAS (almost 6 years ago) after a sudden (overnight) and SEVERE onset of simple and complex motor and vocal tics (tics by the second) - along with personality change, emotional lability, separation anxiety....etc.....we also discovered he had become photosensitive so lighting and tv became big triggers. It was a very difficult time, antibiotics helped but did not bring him back to the way he was pre-PANDAS. We also did lots of vitamins/supplements and removed many foods based on testing. There was little info out there - but I searched all I could and would go to my doctors with info from sites like this. Fast forward....my son is now 11 - he is a joy, he has been on azith since he was about 9 (after trying to go off amox and do a trial of no antibiotics - which was a disaster) - it then took about 6 tries with different antibiotics and combos of antibiotics - then I read about azith and begged for it - I was told it was the last one they would try...it was a miracle! In the last year he has started to get sick the way normal kids get sick, fevers, chills etc - no longer is illness presented with an increase in tics. He is a competitive hockey player - plays 4-5 times a week, and does well in most sports. He also does well in school and no one would know he has anything wrong with him. He does still have tics (only eye ones) but they are quite subtle, I notice them all but others don't. I recently started him on some vitamins from Kirkmanlabs - as I was feeling like his eyes were ticcing more - and he is at an age where this could affect him socially - I am sure it is because he is going through puberty....the vitamins seem to have settled things down. Our plan is to keep him on azith until he is 18. His diet is much more lax now - he has wheat and is allowed dairy at parties etc. At home we just drink almond milk.

I am still in touch with Ronna and I am sure she would not mind me updating that her son is tic free, he is 2 years older than my son. Her story was most like mine (he too is on azith). I hope to give others hope that these kids do get better. 5 years may seem a long time to wait, but the progress has been slow and steady - each month a little better than the month before - we have had a few blips over the years - but nothing significant for the last 2 years. Every once and a while we do a full round of antibiotics if tics emerge due to illness and don't settle down on their own. Again, these tics are minimal - not complex and not vocal. I remember the months of squeaks, coughs, sniffs etc - they would drive me crazy - I would know the minute he was asleep as the house would become silent.

Anyway....just wanted to touch base and give others hope. I always wondered what happened to other posters kids - I hoped the fact they were no longer posting meant they were no longer in a crisis and their kids had got better. This is the case for us.

Wishing all of you mom's and dad's much happiness and love over the holiday season. I think back and my only regret is probably not enjoying school concerts etc as all I was focusing on was my son's tics....if only I had known they would eventually all go away. I hope this gives at least one of you hope....

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allison,

funny, I remember your posts when I first joined the forum and often wonder how things were going, so glad you posted your update and thrilled to hear only good news, especially that he is only 11 now. altho I thought your boy was much older now. Do you also hear from Claire? if so, how are things with her boy?

 

what part of the country are you in? could I ask if the azith worked for your son right away when you tried it, or did it take a while to see? is he doing just twice a week now, or everyday? So basically abx has pretty much been the treatment thus far?

 

thanks so much,

Faith

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That is great news! How much Zithromax is he on? Do your doctors feel safe keeping him on Zithromax for that long? I am asking b/c my 6, 8, and 13 year old children have been on 250mg/day of Zithromax for 14 months. We did liver functions this summer and they were normal, but towards the upper level of normal, so I am always nervous about keeping them on it and for how long.

 

I feel it is the best antibiotic, hands down for them and don't want to stop it, so I am looking for any reassurance that is is safe to keep giving them.

 

Thanks!

 

Colleen

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Hi Faith,

I remember you too! I did not keep in touch with Claire - with hope no news from her is also good news! Her son had been doing really well when she signed off - he was a few years older than my son.

My son has been on 500mg every 5 days. Yes - antibiotics has been the only medical treatment - no steroids etc. We did remove the foods and added supplements initially which for sure helped. We became very lax with the vitamins when he was getting better - he started not wanting to swallow the 15 pills I would put in front of him through the day so I let it go. We do still do probiotics - but even then I ran out a few weeks ago and have not picked any up - so all in all we are pretty laid back about things now. I just was looking for a good multi for my two non eaters (my PANDAS son eats amazing now!) and came across kirkman vitamins and found one that had lots of the supplements I used to give my PANDAS son and thought I would try them - it is only a few pills a day and all come from the same container - so it seems less daunting. I am hoping it just keeps him leveled out as he goes through his growth spurts (he is so tall! a head above most in his class!).

Colleen - our son is on a lower dose than your kids - our doc at the ID clinic has not expressed any concerns about staying on until 18 at the dose he is on - of course there are risks to long terms antibiotics but the risks outweigh the benefits at this point. Azith has truly been a miracle drug.

Azith started working within 24 hours - he was in bad shape when we started it - meaning tics every 5 seconds probably. I said a little prayer and gave him the pill before bed. When he woke up the tics were spread out a bit more, this continued and on day 3 things were getting much better. We stayed on for 15 days I think (long time ago) and he was pretty much tic free by then - then we went to every 7 days - but found he would tic leading up on the 5, 6, 7 days - it was Ronna who said her son was on every 5 days - so we tried that and things were better. Again - it was up and down for a while - but the spikes were less and less. Eventually he just leveled out. We used to have to do a 10 day run about every 2-3 months. We actually did one in September as his eyes were really bugging him (we think it was more the lights at school - which they have removed some and moved his seat - things have got better since then - so we expect it was the antibiotics in combo with lighting changes). The last time we did a full run was probably last January - so he had gone 9 months without any need for a full run. During that time he had got sick a few times but tics were not an issue.

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(((((alison)))))

 

It's so nice to hear from you!

 

The first thing I want to tell you is....go to the blue bar at the top of the thread where it says "options" on the right, click on it and check the second one from the bottom that says "standard." That should reset the threads to how you're used to viewing them. Nothing has changed with the forum format. The same thing has happened here over the years and I hated it, couldn't figure out what was going on.

 

It's wonderful to hear that your son is doing so well, Ronnas too. You guys sure would have had a lot of company if you were going through it all now, wouldn't you? It was so nice for you to post encouragement for everyone new to this.

 

I can't remember if your guy was a picky eater? Would love to hear if he ever out grew that? Seems he was, but not to the extent of my youngest. He's 13 now and nothing has changed with that. I'm afraid it's there for life and it makes me so sad. We would not have the need for something like IVIG, but if I thought that it would reset that button, I'd still consider it. What we take for granted hey? Anyway, I'm so glad you popped in. You might remember me saying that I needed to get to the bottom of this whole thing. I'm still trying! :(

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Hi Kim!!!

 

Thanks for the info on the option button - I have reset it...may just pop in more - I found it so frustrating to read the posts by having to click on each one.

My PANDAS son was a picky eater - he ate only ketchup sandwiches for many many months - wonder bread and ketchup! He will try anything now and likes most things. My younger two are terrible. My middle one has had lots of GI issues which has been more our focus over the last couple years - one crisis ends and another begins....anyway he is also getting better and now just starting to try a few new foods. He had a fingernail size piece of cheese at lunch today and it was a victory!!!! I feel since he started on the supplements (he just learned how to swallow pills - previously all I could get into him were flinstones vitamins) he has a sparkle in his eye that has been missing for many years. He is smiling so much more. I am convinced he has been just malnourished. The supplements he is on with hope are going to stimulate his appetite (zinc). He is tiny for his age - and has been borderline failure to thrive (he is almost 9). I feel like we are onto something with these vitamins - he is much happier, outgoing, etc since starting them a few weeks ago.

You are right, lots of company here for PANDAS parents now....back then it was just Ronna and I! Thank goodness I had Ronna....Ronna had no one!

I was a super picky eater...did not eat vegetables until I was in university. Also would not try new things etc. I am still somewhat picky - won't try most fish - have decided I don't like it without trying it...so my kids do come by it honestly. I do eat much better now though - most vegetables I eat - many only if they are in a soup. I was not as fussy as my kids though - my middle one does not like pizza, pasta, hotdogs, hamburgers, any meat (except one particular chicken nugget), vegetables and most fruits. He eats about 5-6 things and that is it. (mostly dry cereals, dry crackers, dry breads). I have tried juicing, baking with veggies etc - I just try to sneak stuff in wherever I can - mostly in baking - spinach brownies....etc.

Amazing how much older our kids are now....13 wow!

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Hi Trg,

 

He does not have attention problems now - but when he was first sick he did - not ADHD but just not as able to focus - when he was sick his handwriting would start to go backwards - he could not get as much work done. His issues were more emotional lability - he was hard on himself, was up and down with us at home - those issues all improved on antibiotics. His biggest most troubling symptoms were the tics. At school he was not a behavioural kid - the school did not have any concerns about him academically or behaviourally. The tics were really our main focus.

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Hi Allison,

Thanks for posting in order to give us some hope. I have a question for you....My dd is 13 years old and she started 2000mg Augmentin XR 3 weeks ago (tomorrow will be 3 weeks) She improved for the most part during that time. (improved mood, less tactile defensive, less reassurance questions) Her issues are mostly ocd but this fall she started with a vocal tic that shows up when she is under stress with ocd issues. It is a soft vocal tic. On about day ten of that dose of Augmentin her tic went away and stayed away for about ten days until today. :( She started her period on Saturday and since that day things have gone down hill. I was attributing that to hormones as she always had worse symptoms during the first few day sof her period. But then the tic started back today. (5th day of her period) I thought that by today things would be smoothing out again.

 

In your experience when a tic returns (even for one day) is it a sign that the antibiotics are no longer working?

 

Thanks,

Angela

 

Hi All,

 

I used to post here many years ago....it was here where I found so much help, support, etc. Chemar, Claire, Kim, Mustang Carol, and Ronna along with many others helped me find my way during very dark times. I do still check in every once and a while (but I find the new format of threads difficult to follow - I much preferred the old way!). There is also so much more discussion about IVIG etc which was not discussed too much back then - I did ask our doctors about it and they would not even consider it in Canada at the time, same with the steroid boosts. There also seems to be more focus on OCD on the posts I read.... tics were the big issues for us.

My son was diagnosed at 6 with PANDAS (almost 6 years ago) after a sudden (overnight) and SEVERE onset of simple and complex motor and vocal tics (tics by the second) - along with personality change, emotional lability, separation anxiety....etc.....we also discovered he had become photosensitive so lighting and tv became big triggers. It was a very difficult time, antibiotics helped but did not bring him back to the way he was pre-PANDAS. We also did lots of vitamins/supplements and removed many foods based on testing. There was little info out there - but I searched all I could and would go to my doctors with info from sites like this. Fast forward....my son is now 11 - he is a joy, he has been on azith since he was about 9 (after trying to go off amox and do a trial of no antibiotics - which was a disaster) - it then took about 6 tries with different antibiotics and combos of antibiotics - then I read about azith and begged for it - I was told it was the last one they would try...it was a miracle! In the last year he has started to get sick the way normal kids get sick, fevers, chills etc - no longer is illness presented with an increase in tics. He is a competitive hockey player - plays 4-5 times a week, and does well in most sports. He also does well in school and no one would know he has anything wrong with him. He does still have tics (only eye ones) but they are quite subtle, I notice them all but others don't. I recently started him on some vitamins from Kirkmanlabs - as I was feeling like his eyes were ticcing more - and he is at an age where this could affect him socially - I am sure it is because he is going through puberty....the vitamins seem to have settled things down. Our plan is to keep him on azith until he is 18. His diet is much more lax now - he has wheat and is allowed dairy at parties etc. At home we just drink almond milk.

I am still in touch with Ronna and I am sure she would not mind me updating that her son is tic free, he is 2 years older than my son. Her story was most like mine (he too is on azith). I hope to give others hope that these kids do get better. 5 years may seem a long time to wait, but the progress has been slow and steady - each month a little better than the month before - we have had a few blips over the years - but nothing significant for the last 2 years. Every once and a while we do a full round of antibiotics if tics emerge due to illness and don't settle down on their own. Again, these tics are minimal - not complex and not vocal. I remember the months of squeaks, coughs, sniffs etc - they would drive me crazy - I would know the minute he was asleep as the house would become silent.

Anyway....just wanted to touch base and give others hope. I always wondered what happened to other posters kids - I hoped the fact they were no longer posting meant they were no longer in a crisis and their kids had got better. This is the case for us.

Wishing all of you mom's and dad's much happiness and love over the holiday season. I think back and my only regret is probably not enjoying school concerts etc as all I was focusing on was my son's tics....if only I had known they would eventually all go away. I hope this gives at least one of you hope....

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Hi Angela,

 

No - when tics return for short periods of time I don't see it as the antibiotic not working - we still had ups and downs for many years - there were always other factors - we found anything that bothered his immune system could cause a tic to emerge, be it being overtired, coming down with a cold, raining (molds), seasonal allergies, and most recently we find growth spurts. I think the antibiotics just help keep things leveled out a bit - the immuno modulating effect of the azith I think is key - I used to always talk about the bucket theory. Their immune system is like a bucket that can fill up so much before it overflows - an illness is like a hole being nailed in the bucket - so it leaks right away - the other stuff - allergies - food, environmental etc also fill the bucket and can make it overflow. We found when tics emerged due to other issues - we would become very strict again with food/tv watching etc - all other known triggers to try to empty his bucket a bit.

It is when tics get quite bad and the antibiotics are not making a dent that I think it is time to try another antibiotic. We have been on azith for 3 years and he certainly has tics in that time and at no time have I considered taking him off the azith and trying something new. I used to hope that antibiotics would just make it all go away and we would be done with PANDAS and tics - but that did not happen for us - it was a slow process but worth the journey. The antibiotics have been a crucial part of his treatment but so has all the other stuff that we did and still do. (still no gameboys etc and we still limit watching tv and florescent lights still bother him - but not nearly as badly as they used to - he would almost convulse when we went into stores with lighting - it was pretty shocking.)

I am assuming you are having her take probiotics (I didn't early on - had never heard of them back then!) Yeast could be an issue if you are on a full round of antibiotics.

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Hi Angela,

 

No - when tics return for short periods of time I don't see it as the antibiotic not working - we still had ups and downs for many years - there were always other factors - we found anything that bothered his immune system could cause a tic to emerge, be it being overtired, coming down with a cold, raining (molds), seasonal allergies, and most recently we find growth spurts. I think the antibiotics just help keep things leveled out a bit - the immuno modulating effect of the azith I think is key - I used to always talk about the bucket theory. Their immune system is like a bucket that can fill up so much before it overflows - an illness is like a hole being nailed in the bucket - so it leaks right away - the other stuff - allergies - food, environmental etc also fill the bucket and can make it overflow. We found when tics emerged due to other issues - we would become very strict again with food/tv watching etc - all other known triggers to try to empty his bucket a bit.

It is when tics get quite bad and the antibiotics are not making a dent that I think it is time to try another antibiotic. We have been on azith for 3 years and he certainly has tics in that time and at no time have I considered taking him off the azith and trying something new. I used to hope that antibiotics would just make it all go away and we would be done with PANDAS and tics - but that did not happen for us - it was a slow process but worth the journey. The antibiotics have been a crucial part of his treatment but so has all the other stuff that we did and still do. (still no gameboys etc and we still limit watching tv and florescent lights still bother him - but not nearly as badly as they used to - he would almost convulse when we went into stores with lighting - it was pretty shocking.)

I am assuming you are having her take probiotics (I didn't early on - had never heard of them back then!) Yeast could be an issue if you are on a full round of antibiotics.

Thank you very much for responding Allison. Dd is on a probiotic as well as 8000mg vitamin D3, Omega 3's, Advil (which reduces her symptoms a TON), and 40mg Celexa, as well as a regular multivitamin. I'll try to hold off panicking just yet. =) Wish this road were a little easier. Happy Holidays!

Angela

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