To Allison....

[mommaonamission]

Hi Allison. My name is Sarah. Your name was referred to on a couple of posts about the one to go to with PANDAS questions. I am trying to educate myself on this subject. Please help me.

 

My son is 12 and has had tics since he was 5. Just little ones like throat clearing, hopping, sniffing. They drove us crazy, but his friends at school never even noticed. He got a strep virus about 3-4 weeks ago. I took him to the doctor, he was put on amoxicillian(sp?.) Within the evening he was shouting uncontrolably. Within a week it was causing him headaches and sore throats and for the first time, his tics were obvious in school. I have him on a vit B complex, grapefruit seed extract, anti-wheat and allergy drops, and some pro-biotics. I have cut him off of caffine, and very much limit his sugar. He had an MRI to rule out any other cause of the headaches, and we have an appointment to see a Pediatric Neurologist on Dec 8th. Some days are better than others, but none are good. I guess I was hoping that once the virus cleared out, his tics would lessen. He does still have a lingering congested cough though.

 

We went to Harry Potter last night for opening night, because it has been tradition to do so. I was hesitant, but he was looking so forward to it. We didn't make it through the previews. My heart was breaking for him and my stomache in knots. I could see how hard he tried to hold back the shouting. He bit his hand and squeezed mine, and there was nothing I could do to help him at that moment.

 

Thank you so much for you time. I thank God for all the support given on this board and through other parents.

[ad_ccl]

Hi Sarah,

 

It is me that they are talking about...I read your posts this evening and planned on replying but had to go to Hockey - and am just back and have a minute to post.

 

I will bump up the thread I started when I first found this site - I have gained valuable insights from all those who post here - and so much support. I think regardless of how good your friends and family are there is nothing like feeling understood by another mother (or father) going through something like this. Ronna's posts were the one's I focused on initially as her son also has PANDAS. She has posted so much great info on the medical info related to PANDAS. I followed Cheri ( chemar's) info on supplements, I printed off her post and went into health food stores trying to educate myself - this was all new to me. Claire (who has moved on to greener pastures - has many amazing threads and info - so keep an eye for her posts as well)

 

Anyway...trying to keep it somewhat short - you can read more details on the bumped thread called New Here.

 

Your son does sound a lot like mine. My son started with a chronic cough at 3 - we had recently had a new baby - and after several weeks of coughing we took him to the doctor - she said it may be a transient tic - new baby jealousy - behavioural type of cough. We thought fine and that was that - the cough continued. As a side bar he had chronic ear and throat infections from 18 months to 2 years - and several prior to the 18 month mark - his first requiring antibiotics was at 6 months. He had ENT surgery at 2 and was never sick again - or so we thought.

Our PANDAS overnight sudden explosion of tics happened a few weeks after he turned 6. During the 3-6 year the cough never went away - it drove me crazy! He also would have occassional sniffs, eye blinks, very minor that no one would notice - even the cough no one noticed - all of his symptoms would easily be dismissed by others as allergies. During this time he did not miss one day of school for illness - he had a very limited diet - ate ketchup sandwiches for about 4 months for all meals - but he drank lots of milk so we thought that was at least good. He is tall for his age, a good weight, sociable, lots of friends does well in school.

When my son was almost 5 we changed pediatrician for issues related to her care of our second child. When we met with the new doctor my son was blinking at the time so I raised it to him and said I understand he probably has transient tics - he looked in his eyes and they were very irritated and red - he suggested it may not be tics but an irritation - he gave him antihistime drops and the eye tics were gone within a day or so. He also wanted to rule out the cough as anything else - so he put him on biaxin in case there was an underlying infection - after three days the cough was gone, for the first time in so long - we were unable to get the rest in to him and the cough came back - we tried amoxycillin and the cough remained. So we lived with the cough but I kept wondering why the biaxin made it go away. The summer he was turing 6 his cough was getting quite bad so we had him see a asthma specialist - he was too young to do the proper tests - so that was inconclusive, we were starting to see more subtle tics at this time, finger movements - I tried to ignore it - that was hard. Then in late August we were at the cottage for a few weeks - his cough was getting so bad, like a gasp - he also had a shift in personality, lacking empathy which is very unlike him - he was getting up during the night to put on his music -which he liked to fall asleep to. He seemed restless - nothing was fitting him right, ( he always hated tags - and was particular about clothing, but the clothes that were usually fine were no longer ok) he complained about being no good at anything, terrible at riding his bike etc. I took him into the doctor on a Monday - saying I don't know why I am here, he has no fever, no symptoms of illness but something isn't right. I described how he was at the cottage - and I remember clearly saying, I get that he has tics, I am learning to accept that but I just don't want to be missing something bigger. He asked about his throat if it had been sore, I said no - although later we remembered one night him telling us his throat was dry. He looked in his throat and it was red, he did a culture which was also positive. He told me about PANDAS - of note is that the time we were at the doctors office tics were emerging, one's I had not seen before - I spent about an hour at the office - and in the end the doctor said he through he might have PANDAS and we could wait for the results of the strep or go ahead on antibiotics - he is not one to give antibiotics out easily. I opted for the antibiotics - we gave two doses that night - the next morning when he woke up I could not believe what I was seeing. There was nothing subtle about the tics - we could not take him out in public - we cancelled a park play date - I was horrified - tics I had never seen on anyone were happening, complex motor and vocal tics. I called the doctor who said he suspected it was PANDAS even more now and that I should give the medicine 36 hours - the next day he was still terrible, and the next day still terrible, school was starting in a week and there is no way I could send him - like a miracle by mid afternoon tics diminished 80% - during the remainder of the 10 days essentially all tics were gone except for the cough - which I vowed I would never complain about again!

Unfortunately tics came back after a week off antibiotics, then back on them things got better, then worse one's off them - eventually I convinced him to keep us on them until we sorted things out - we saw a child psychiatrist - who agreed with the PANDAS diagnosis - and did not prescribe drugs, we saw a neurologist who was the same, and the infectious disease clinic who just gave the go ahead for the prophylactic use of antibiotics. It was now the end of December and he was still ticcing alot even on antibiotics - they would get worse when one of his siblings was sick - so PITANDS seemed like an obvious diagnosis - pediatric illness triggered auto-immune neuro-psych disorder assoc. with strep.

We started to look outside the box over Christmas - and that was when I started to take the natural approaches more seriously - I had hoped the antibiotics would do the trick - and I have never been into alternative things in general so this was very new to me. I love your post name because I know that I was a mom on a mission myself. I would go to the doctors with pages from here printed off - anecdotal was all I had - there is very little concrete info on PANDAS research as it is so new.

 

Anyway....sorry for being so long winded - ultimately I believe the immune system is KEY!!! There seem to be many trigger which are common for many of these kids. Food allergies are one - I would never have believed my son had any food allergies/sensitivities as he did not have what I would consider the normal signs of this - upset stomach etc. For fun I took him off milk after seeing it as a common problem and knowing how much milk he drank, consumed - within a week the tics decreased significantly, we had also started supplements so I assumed it was that that made things better - so we let him have milk again - then he got worse within a few days. So - we did the IGg testing for food sensitivities just for some answers - he was highly allergic to milk, gluten soy and eggs - we have taken all of this out of his diet - and seen amazing results. Another clear trigger was the tv - we initially limited then removed it 100% this also helped - we have an LCD tv for him which he can watch without a problem. Flouresent lights are a big problem still for him - his classroom lights are off for him, but if we go somewhere brightly lit within about 15 minutes his eyes start to bother him - he is managing better as he used to go into full tics - Movies are not something we have done since the PANDAS - but a few weeks prior to the onslot of tics he did go and see the YuGiOh movie, and his throat clearing/cough was really bad - non stop and much louder than normal - so it was obviously a trigger. We have been supplementing - but have reduced the vitamin regiment significantly in recent months - he eats really well now.

 

Ronna has had the experience of Amoxycillin not working for her son - I think Keflex is what works for her son. If he does have strep he NEEDS to be on the antibiotics for the full course to kill the infection ( although I think there was a poster before me called Heather whose son got worse on the antibiotics because of yeast problems) Giving a probiotic is important - I did not do this for the first 4 months - (thought it was too alternative - why wouldn't the doctor have told me if I really needed it)

 

Currently my son is doing amazing ( minus the last few days were we have a down turn - but it is getting better - and is no where like those first 4-5 months) Illness does trigger tics which are usually very subtle - of note is that once we went off all dairy his chronic cough went away and has never come back - so it was an allergy - not a tic. He goes for many weeks 100% tic free - then when his immune system is struggling he gets very minor tics - slight eye squint many 3 times in a day - nothing anyone would notice - but me of course.

 

Other things that happened when he as sick early on - ADHD type behaviour - lack of focus, separation anxiety -which plays out for him in his fear of dying and others around him dying - and deterioration of handwriting and emotional lability.

 

Not sure if this has been helpful - somewhat therapeutic for me to think what a journey we have travelled.

 

Please ask me any questions you have - I would be happy to answer. It does sound like PANDAS is a real possibility with the explosion of tics you are describing as well as the strep infection.

 

Hang in there, I know the shock and heartbreak of watching a child tic - when it is an indicator that something is not right.

 

You have come to the right place for support and information.

[mommaonamission]

Thank you Allison. We made it through a rough weekend. I picked up some more supplements today to start experimenting with. I am going to continue to research and learn from people on this board and others. Thanks for reposting the other thread. While grocery shopping tonight I found myself reading labels obsessively. I really took for granted before how easy life was. I also know that it is much harder for others than me. So, I guess I am thankful. I'm sure most on this board can relate. It will be tough, but I know it will get better. I just pray the kids at school don't make it harder on him. He doesn't want to be different. Thanks again for your help and I'm sure I will be needing more advice from you and others at times. Hopefully I can learn and in turn help someone else.

 

Hi Sarah,

 

It is me that they are talking about...I read your posts this evening and planned on replying but had to go to Hockey - and am just back and have a minute to post.

 

I will bump up the thread I started when I first found this site - I have gained valuable insights from all those who post here - and so much support. I think regardless of how good your friends and family are there is nothing like feeling understood by another mother (or father) going through something like this. Ronna's posts were the one's I focused on initially as her son also has PANDAS. She has posted so much great info on the medical info related to PANDAS. I followed Cheri ( chemar's) info on supplements, I printed off her post and went into health food stores trying to educate myself - this was all new to me. Claire (who has moved on to greener pastures - has many amazing threads and info - so keep an eye for her posts as well)

 

Anyway...trying to keep it somewhat short - you can read more details on the bumped thread called New Here.

 

Your son does sound a lot like mine. My son started with a chronic cough at 3 - we had recently had a new baby - and after several weeks of coughing we took him to the doctor - she said it may be a transient tic - new baby jealousy - behavioural type of cough. We thought fine and that was that - the cough continued. As a side bar he had chronic ear and throat infections from 18 months to 2 years - and several prior to the 18 month mark - his first requiring antibiotics was at 6 months. He had ENT surgery at 2 and was never sick again - or so we thought.

Our PANDAS overnight sudden explosion of tics happened a few weeks after he turned 6. During the 3-6 year the cough never went away - it drove me crazy! He also would have occassional sniffs, eye blinks, very minor that no one would notice - even the cough no one noticed - all of his symptoms would easily be dismissed by others as allergies. During this time he did not miss one day of school for illness - he had a very limited diet - ate ketchup sandwiches for about 4 months for all meals - but he drank lots of milk so we thought that was at least good. He is tall for his age, a good weight, sociable, lots of friends does well in school.

When my son was almost 5 we changed pediatrician for issues related to her care of our second child. When we met with the new doctor my son was blinking at the time so I raised it to him and said I understand he probably has transient tics - he looked in his eyes and they were very irritated and red - he suggested it may not be tics but an irritation - he gave him antihistime drops and the eye tics were gone within a day or so. He also wanted to rule out the cough as anything else - so he put him on biaxin in case there was an underlying infection - after three days the cough was gone, for the first time in so long - we were unable to get the rest in to him and the cough came back - we tried amoxycillin and the cough remained. So we lived with the cough but I kept wondering why the biaxin made it go away. The summer he was turing 6 his cough was getting quite bad so we had him see a asthma specialist - he was too young to do the proper tests - so that was inconclusive, we were starting to see more subtle tics at this time, finger movements - I tried to ignore it - that was hard. Then in late August we were at the cottage for a few weeks - his cough was getting so bad, like a gasp - he also had a shift in personality, lacking empathy which is very unlike him - he was getting up during the night to put on his music -which he liked to fall asleep to. He seemed restless - nothing was fitting him right, ( he always hated tags - and was particular about clothing, but the clothes that were usually fine were no longer ok) he complained about being no good at anything, terrible at riding his bike etc. I took him into the doctor on a Monday - saying I don't know why I am here, he has no fever, no symptoms of illness but something isn't right. I described how he was at the cottage - and I remember clearly saying, I get that he has tics, I am learning to accept that but I just don't want to be missing something bigger. He asked about his throat if it had been sore, I said no - although later we remembered one night him telling us his throat was dry. He looked in his throat and it was red, he did a culture which was also positive. He told me about PANDAS - of note is that the time we were at the doctors office tics were emerging, one's I had not seen before - I spent about an hour at the office - and in the end the doctor said he through he might have PANDAS and we could wait for the results of the strep or go ahead on antibiotics - he is not one to give antibiotics out easily. I opted for the antibiotics - we gave two doses that night - the next morning when he woke up I could not believe what I was seeing. There was nothing subtle about the tics - we could not take him out in public - we cancelled a park play date - I was horrified - tics I had never seen on anyone were happening, complex motor and vocal tics. I called the doctor who said he suspected it was PANDAS even more now and that I should give the medicine 36 hours - the next day he was still terrible, and the next day still terrible, school was starting in a week and there is no way I could send him - like a miracle by mid afternoon tics diminished 80% - during the remainder of the 10 days essentially all tics were gone except for the cough - which I vowed I would never complain about again!

Unfortunately tics came back after a week off antibiotics, then back on them things got better, then worse one's off them - eventually I convinced him to keep us on them until we sorted things out - we saw a child psychiatrist - who agreed with the PANDAS diagnosis - and did not prescribe drugs, we saw a neurologist who was the same, and the infectious disease clinic who just gave the go ahead for the prophylactic use of antibiotics. It was now the end of December and he was still ticcing alot even on antibiotics - they would get worse when one of his siblings was sick - so PITANDS seemed like an obvious diagnosis - pediatric illness triggered auto-immune neuro-psych disorder assoc. with strep.

We started to look outside the box over Christmas - and that was when I started to take the natural approaches more seriously - I had hoped the antibiotics would do the trick - and I have never been into alternative things in general so this was very new to me. I love your post name because I know that I was a mom on a mission myself. I would go to the doctors with pages from here printed off - anecdotal was all I had - there is very little concrete info on PANDAS research as it is so new.

 

Anyway....sorry for being so long winded - ultimately I believe the immune system is KEY!!! There seem to be many trigger which are common for many of these kids. Food allergies are one - I would never have believed my son had any food allergies/sensitivities as he did not have what I would consider the normal signs of this - upset stomach etc. For fun I took him off milk after seeing it as a common problem and knowing how much milk he drank, consumed - within a week the tics decreased significantly, we had also started supplements so I assumed it was that that made things better - so we let him have milk again - then he got worse within a few days. So - we did the IGg testing for food sensitivities just for some answers - he was highly allergic to milk, gluten soy and eggs - we have taken all of this out of his diet - and seen amazing results. Another clear trigger was the tv - we initially limited then removed it 100% this also helped - we have an LCD tv for him which he can watch without a problem. Flouresent lights are a big problem still for him - his classroom lights are off for him, but if we go somewhere brightly lit within about 15 minutes his eyes start to bother him - he is managing better as he used to go into full tics - Movies are not something we have done since the PANDAS - but a few weeks prior to the onslot of tics he did go and see the YuGiOh movie, and his throat clearing/cough was really bad - non stop and much louder than normal - so it was obviously a trigger. We have been supplementing - but have reduced the vitamin regiment significantly in recent months - he eats really well now.

 

Ronna has had the experience of Amoxycillin not working for her son - I think Keflex is what works for her son. If he does have strep he NEEDS to be on the antibiotics for the full course to kill the infection ( although I think there was a poster before me called Heather whose son got worse on the antibiotics because of yeast problems) Giving a probiotic is important - I did not do this for the first 4 months - (thought it was too alternative - why wouldn't the doctor have told me if I really needed it)

 

Currently my son is doing amazing ( minus the last few days were we have a down turn - but it is getting better - and is no where like those first 4-5 months) Illness does trigger tics which are usually very subtle - of note is that once we went off all dairy his chronic cough went away and has never come back - so it was an allergy - not a tic. He goes for many weeks 100% tic free - then when his immune system is struggling he gets very minor tics - slight eye squint many 3 times in a day - nothing anyone would notice - but me of course.

 

Other things that happened when he as sick early on - ADHD type behaviour - lack of focus, separation anxiety -which plays out for him in his fear of dying and others around him dying - and deterioration of handwriting and emotional lability.

 

Not sure if this has been helpful - somewhat therapeutic for me to think what a journey we have travelled.

 

Please ask me any questions you have - I would be happy to answer. It does sound like PANDAS is a real possibility with the explosion of tics you are describing as well as the strep infection.

 

Hang in there, I know the shock and heartbreak of watching a child tic - when it is an indicator that something is not right.

 

You have come to the right place for support and information.

[ad_ccl]

Hi Sarah,

 

Glad you are starting the journey of getting your son better - it is overwhelming at first but it is amazing how much these kids have in common and how much we can learn from each other - regardless of the tic syndrome the kids have - diagnosed or not. It all seems connected to the immune system. I have often talked about the bucket theory - and there is so much the kid's immune system can handle then it just overflows - I think the tics come when the bucket is overflowing.

I would really recommend the no screens for your son after re-reading your post on the movie experience. That may be one of the things that he could handle before but now that his bucket is overflowing with the strep infection he is no longer able to tolerate it as well - it may give him much needed relief.

 

I liked doing the IGG testing for food allergies as I wanted to be sure - I have read others (giselle I think) who did an elimination of wheat and replaced most wheat products with corn products - her son got worse and in the end tested positive to corn as well. Another one to keep in mind it to be careful not to replace dairy with soy as 30% of kids allergic to milk are also allergic to soy. We had put all the kids on soy when we first went off milk - my middle son who has no tics/behaviour problems started having tantrums and being impossible - and having accidents - we did the food testing for all three kids just to see how they were - the middle one was highly allergic to soy - again I was amazed how food sensitivities can result in behavioural changes.

 

Good Luck - looking forward to reading updates.