Felt Compelled To write...TICS are STILL GONE!

[Dedee]

myrose,

 

I am so happy for you. It is wonderful to see these kinds of posts here. I am not suprised to hear of your success with topamax. When I took my son to a pediatric neurologist (supposed to be the best), she also suggested topamax for him. He had taken abilify for only a couple of weeks and it made him an absolute zombie, so I took him off of it. She said that topamax was a relatively new treatment for tic disorder but very effective and well tolerated in children because it did not have most of the unwanted side effects of other meds used for tics. I was familiar with topamax because I take it for migraines so I knew it had not caused problems for me. However, at that point I was on a mission to get someone to take his PANDAS diagnosis seriously and treat him for that and not just give us medication. She didn't really blow off the PANDAS but kind of talked around it and mostly suggested meds for the tics and OCD. We decided not to try it and to go to Dr. Murphy and get antibiotic therapy instead. This has worked very well for us. It is good to hear of your success with this medication as I believe it is a great alternative to some of the traditional tic medications that leave the child feeling dull and sleepy, not to mention weight gain and other side effects. Your daughter is very lucky to have a mother who is as persistant and dedicated as you have been to find the right treatment plan for her. Success is different in each situation, and it is great that you have shared your story with everyone. I am sure it will help someone else someday. I hope that you continue to enjoy your family and enjoy life! Keep us updated, it is great to hear success stories.

 

Dedee

[EAMom]

Hi dominique,

 

re tooth extractons/dental cleaning...our 7.5-year-old daughter got strep in Jan (3 days of FEVER, we didn't realize it was strep at the time, that

is when beh. changes started) and had tooth extractions (for orthodontic reasons) in Feb. and early March...her symptoms (OCD, tics, anorexia, emotional lability, tantrums, anxiety) got *much* worse after each extraction (after 2nd extraction she was full blown anorexia nervosa and quite psychotic). When we finally learned about PANDAS, we did throat cultures ....postive for strep in March (as did her asymptomatic 5-year-old sister). (Interestingly, her strep antibodies were not high when tested in March and April.)

 

We suspect what happened with the tooth extractions (could happen with dental cleaning or nose picking as well according to ped. rheumatologist at Stanford) is that more strep (from mouth/throat) got released into dd's bloodstream after each extraction....this is why somebody with ARF has to go on abs b-4 they go to the dentist.

 

So, if anyone else has worsened symptoms after tooth extractions or dental cleaning...that IMO is a big red flag that strep may be the culprit/cause of tics/OCD.

 

What antibiotic combination did your son go on? Many here (my dd included) have had sucess with Azithromycin but I have also wondered about using more than 1 antibiotic at a time for those non-responders.

 

Is your son currently on prophylactic antibiotics?

 

Thank you for posting, I think we can all learn a lot from these sucess stories...

[myrose]

The first EEG was the 20 minute one. It involved the flashing of the lights. This showed some spikes and discharges which led to the 24 hour EEG. We spent the night there for this one and she was also video monitored through the whole thing as well. The discharges were still there.

We repeat the EEG next month. The tics though had nothing to do with the somewhat abornmal EEG.

She also has never had a seizure but the discharge on the EEG could mean a predispostion to have seizures in the future. Everything else has been ruled out.

She was put on topamax as a precautionary in the advent she started to have seizures. It also controls her tics 100% so we sort of took care of both issues even a a very low dose. We will have to wait and see what the next EEG shows.

 

 

 

 

 

 

 

Was your daughter's EEG done with flashing lights as a stimulus? (ie checking for a photosensitive seizure disorder).

[hopefulinsc]

wow, I'm a new member as of today. Your post made me cry. I am so happy for you that the medication is working for your daughter. Our daughter hasn't yet been diagnosed with P.A.N.D.A.s, but based upon all the research we've done, I can't see how it could be anything else. We are dealing with the OCD side, rather than the TIC side. But, I completely understand how you were feeling and what you were doing as I have done the same thing. I've spent every spare moment on the computer, researching, researching, researching. I am so drained.....but, apparently, I know more about this conditon that the doctors (how said is that)...

 

Anyway, I hope that the medication continues to work for your daughter and I'm so happy that you are back to having fun again. Really makes you appreciate everything more - doesn't it?

 

I feel as though I deserted these boards! I got so much encouragement, care, concern and help here. I have been living again! Laughing again! Playing again! ALL WITH MY DAUGHTER AGAIN. I realized how much time I lost with her during the whole ordeal. It still makes me cry when I think about it.

Some of you know my daughters history. Here is a quick recap: Started blinking a few days after receiving 9 vaccinations in one day. Shoulder shrugging and neck tic followed. Pediatrian said to wait it out. I did for a bit. The little twitches didn't bother her, probably bothered me more.

They did seem to increase so after 6 months I went to a neuro on my own. Blood tests were done for pandas and some amino aicds. A 20 minute sleep deprived EEG and an MRI. Blood tests were okay, MRI was okay but the EEG was reading somewhat abnormal. We repeated the EEG but this time a 24 hour one with video monitoring. We were told the 2nd one was okay a few days later. We refused any meds and her tics became part of life but all was still pretty much okay.

Then the arm tic started. This prevented her from writing in pre-school. Her arm would jerk forward while writing. I called the neuro back and then suggested clonidine. I said okay. This seemed to work but shortly after she began to experience nightmares. I was then told that this was unfortunately a rare side effect of the clonidine. I was furious and refused to try the next one they suggested. That very night I started to educate myself of her condition. I started reading every chance I got. It was then that I found these boards. I learned so much here. I then started with it all and I mean ALL. We did the food thing, the supplements, the eliminations, the allergy thing, the chiropractor, the physicatrist, the acupunture, the therapy. Heck I even iTnstalled a ultra blue violet light on our air conditioning unit. Hepa filter in her room. Got rid of all the carpets. Everything went natural right down to the toothpaste, shampoos, laundry detergent and cleaners. I even sent her pee in for testing and had my home tested for mold. Chlroine filters on the shower heads and a water purification system. I turned my home into the "GREEN" house of the year!

Everything we tried seemed to maybe help but we never sure because they always came back no matter what. It was always just a matter of time.

It was always a NEW doctor, a new test, or something else she couldn't do or eat. I basically put this little girl of mine into a BUBBLE!!!!!!

We even started to avoid birthday parties because of the cake and things, she also ate a different snack than any of the other kids during snack time.

I even took the pool away from her because of the chlorine! Life went on for me but only for the purpose of reading and reading and reading. Looking for triggers and explanations. Little did I know what I was doing to my daughter. I never had time for her anymore. I was always on the computer, always reading, always taking notes, always saying NO you can't have that or NO we can't do that. I tried to make excuses for it all but aftertime she caught on and I saw the sadness in her face. She wondered why she was so different than anyone else. I told her she was NOT different but SPECIAL.

Then the weekend came that changed my life.....She woke up one day with a new tic. This tic was different from the others. It was a head bob up and it was SEVERE. It was so bad it was hard to look at her sometimes. She started to complain about it, this was new because she never complained about her tics.

Her teacher who never even noticed her tics before informed me of it. Her neck started to hurt so bad from the bobbing she was constantly crying.

I picked her up from pre-K that week and once she got in the car she could not stop crying. All the while her head was still bobbing backwards. She told me she hated herself and that no one else at school has shakes (that is what she calls them) She then continued to tell me that I must not love her because I wasn't helping her. I then tried to explain that all the things we were doing was to try and help her. She then said she didn't want anymore help then. She cried all the way home that day and never really was like my little girl again. She began to dislike school which was shocking to everyone but we later learned that some kids were making fun of her. I started to experience SEVERE heart palpatations, stopped eating, lost 9 pounds. The realtionship with my husband was pretty much gone at this point as well. He was always screamed at for something he gave her to eat that was NOT on the list. No one understood what this was like...no one. All I did was read, drink coffee and cry. I spent a week in bed and one day out of the corner of my eye I caught a glance of my daughter. She looked so sad, her eyes swollen from the constant crying and her neck held to the side because of the pain. I was either going to just lay back down and die or do whatever I could no MATTER what it is to fix this mess. I chose to get out of bed that day and call yet another neuro. My daughter was SO SICK of doctors by now. She wouldn't even go near them. I had her records sent over via fax the next day and the office called me quickly. He said it looked like seizure activity in my daughters EEG. We scheduled to have yet another done and in the meantime he called us in a script for topamax. I picked up the topamax that day. Within 3 days her tics were gone. I was astonished to say the least! I took a walk with my daughter that night and for the first time in what seemed a lifetime....she wasn't stomping her feet. She was singing!!!!!!!!!!!!!! I was SO SCARED to hang on to this! We have had too many hopes when something worked for a bit only to have them come back. I thought finally maybe we have found the problem. I HATED the old Neuro and wanted to do VERY bad things to him. Just thinking we went throug all that ###### for nothing. Well....we did the EEG wih the new neuro expecting fully to get a diagnosis of some sort of seizure disorder. Especially because of the Topamax taking the tics away. To our surpirse her EEG showed a little discharge but was fine and she definitely has no seizure activity going on and the tics are not related at all to anything in her EEG anyhow. Puzzled as we all were we decided to keep her on the topamax and see what happened and if they came back. It was smooth sai;ing for about a month 1/2. We went in for a check up and all was well. The kind nurse practioner even gave me some free samples of topamax. She knew that our insurance covered NOTHING and at this point after all the tests and thigns we were about $18,000 in debt. I thanked her and and went home. I started my daughter on the topamax samples after her prescription ran out. Two or Three days later I almost fell to the floor when I saw her head bob came back.

I couldn't believe it, I just wanted to die. I knew that if we all had to go through this again the outcome was just not going to be a goodone for anyone.

I took a deep breath and suddenly remembered all the things I learned on this board about ingredients! My daughter was taking topamax in the sprinkle cap form but the ones the nurse gave me were in a tablet form. For the heck of it I researched the ingredients and WOW they were different. I quickly called in to get her old prescription renewed and refilled and started her back on the sprinkle cap form the next day. One day later...the tics were gone again.

Its been almost 3 months now and we are back to the family we used to be. My daughter is SO HAPPY! I have her back!!! We sing, we dance, we play, we make cookies, we do everything together. I LOVE this little girl so much and to think back on what I turned her life into will always be hard to forgive myself.

I lost so much time with her! The tics ran my life and then they took hers over.

I know how most of you feel about meds and I can assure you that I did my research well. Topamax is used to treat migraines, seizures and is also being recently used for weight loss. Its the only med that does not cause that Tardive thing (movement disorder). It does have some scary side effects like tingling, kidney stones but this is in high adult doses from 50 to 400 mg. My daughter started at only 15mg and after a week we went up to 25mg. We are staying here and I will never increase. The neuro continues to push an increase stating that she is at too low of a dose for her weight but I have and will continue to REFUSE. This low dose has never caused any issues for my daughter. The first week on it I noticed that she lost her temper a little more but as fast as I got concerned...it went away and never came back. She is not tired like most tic meds make you and she has not gained or lost any weight. She is still 5 years old but had enough maturity to tell me that she NEVER wants to stop taking her medicine. She asks me for it every night after dinner. We continued to eat well and healthy, we always did before this anyhow so there is not a big change there. But sometimes we go out and she eats WHATEVER SHE WANTS!!!!! Sometimes we go to Mcdonalds TOO!!!

She swims everyday again and we make it a point to go to EVERY BIRTHDAY PARTY we get invited to and I let her have all the cake and ice-cream SHE WANTS!! She even eats the same snacks as everyone else does in school now.

She turns 6 in a few weeks and Monday was her first day in Kindergarden!! SHE LOVED IT!!!!!!!!!!!!

The only other thing she takes other than topamax is a good multivitamin.

Well I am sure this turned into a novel! I just felt so compelled to share our success with topamax to everyone.

Hopefully one day she won't need medicine but today she does and I am okay with that now. One thing I have learned through this whole ordeal is what really counts is the QUALITY of life. It is for us anyhow. Have a nice night everyone and I sure do wish gods speed on anyone who needs it. Also a big hello to all my friends here and a BIG Thank You to all of you who have helped me through one of the most difficult times of my life.

[Lindam]

I feel as though I deserted these boards! I got so much encouragement, care, concern and help here. I have been living again! Laughing again! Playing again! ALL WITH MY DAUGHTER AGAIN. I realized how much time I lost with her during the whole ordeal. It still makes me cry when I think about it.

Some of you know my daughters history. Here is a quick recap: Started blinking a few days after receiving 9 vaccinations in one day. Shoulder shrugging and neck tic followed. Pediatrian said to wait it out. I did for a bit. The little twitches didn't bother her, probably bothered me more.

They did seem to increase so after 6 months I went to a neuro on my own. Blood tests were done for pandas and some amino aicds. A 20 minute sleep deprived EEG and an MRI. Blood tests were okay, MRI was okay but the EEG was reading somewhat abnormal. We repeated the EEG but this time a 24 hour one with video monitoring. We were told the 2nd one was okay a few days later. We refused any meds and her tics became part of life but all was still pretty much okay.

Then the arm tic started. This prevented her from writing in pre-school. Her arm would jerk forward while writing. I called the neuro back and then suggested clonidine. I said okay. This seemed to work but shortly after she began to experience nightmares. I was then told that this was unfortunately a rare side effect of the clonidine. I was furious and refused to try the next one they suggested. That very night I started to educate myself of her condition. I started reading every chance I got. It was then that I found these boards. I learned so much here. I then started with it all and I mean ALL. We did the food thing, the supplements, the eliminations, the allergy thing, the chiropractor, the physicatrist, the acupunture, the therapy. Heck I even iTnstalled a ultra blue violet light on our air conditioning unit. Hepa filter in her room. Got rid of all the carpets. Everything went natural right down to the toothpaste, shampoos, laundry detergent and cleaners. I even sent her pee in for testing and had my home tested for mold. Chlroine filters on the shower heads and a water purification system. I turned my home into the "GREEN" house of the year!

Everything we tried seemed to maybe help but we never sure because they always came back no matter what. It was always just a matter of time.

It was always a NEW doctor, a new test, or something else she couldn't do or eat. I basically put this little girl of mine into a BUBBLE!!!!!!

We even started to avoid birthday parties because of the cake and things, she also ate a different snack than any of the other kids during snack time.

I even took the pool away from her because of the chlorine! Life went on for me but only for the purpose of reading and reading and reading. Looking for triggers and explanations. Little did I know what I was doing to my daughter. I never had time for her anymore. I was always on the computer, always reading, always taking notes, always saying NO you can't have that or NO we can't do that. I tried to make excuses for it all but aftertime she caught on and I saw the sadness in her face. She wondered why she was so different than anyone else. I told her she was NOT different but SPECIAL.

Then the weekend came that changed my life.....She woke up one day with a new tic. This tic was different from the others. It was a head bob up and it was SEVERE. It was so bad it was hard to look at her sometimes. She started to complain about it, this was new because she never complained about her tics.

Her teacher who never even noticed her tics before informed me of it. Her neck started to hurt so bad from the bobbing she was constantly crying.

I picked her up from pre-K that week and once she got in the car she could not stop crying. All the while her head was still bobbing backwards. She told me she hated herself and that no one else at school has shakes (that is what she calls them) She then continued to tell me that I must not love her because I wasn't helping her. I then tried to explain that all the things we were doing was to try and help her. She then said she didn't want anymore help then. She cried all the way home that day and never really was like my little girl again. She began to dislike school which was shocking to everyone but we later learned that some kids were making fun of her. I started to experience SEVERE heart palpatations, stopped eating, lost 9 pounds. The realtionship with my husband was pretty much gone at this point as well. He was always screamed at for something he gave her to eat that was NOT on the list. No one understood what this was like...no one. All I did was read, drink coffee and cry. I spent a week in bed and one day out of the corner of my eye I caught a glance of my daughter. She looked so sad, her eyes swollen from the constant crying and her neck held to the side because of the pain. I was either going to just lay back down and die or do whatever I could no MATTER what it is to fix this mess. I chose to get out of bed that day and call yet another neuro. My daughter was SO SICK of doctors by now. She wouldn't even go near them. I had her records sent over via fax the next day and the office called me quickly. He said it looked like seizure activity in my daughters EEG. We scheduled to have yet another done and in the meantime he called us in a script for topamax. I picked up the topamax that day. Within 3 days her tics were gone. I was astonished to say the least! I took a walk with my daughter that night and for the first time in what seemed a lifetime....she wasn't stomping her feet. She was singing!!!!!!!!!!!!!! I was SO SCARED to hang on to this! We have had too many hopes when something worked for a bit only to have them come back. I thought finally maybe we have found the problem. I HATED the old Neuro and wanted to do VERY bad things to him. Just thinking we went throug all that ###### for nothing. Well....we did the EEG wih the new neuro expecting fully to get a diagnosis of some sort of seizure disorder. Especially because of the Topamax taking the tics away. To our surpirse her EEG showed a little discharge but was fine and she definitely has no seizure activity going on and the tics are not related at all to anything in her EEG anyhow. Puzzled as we all were we decided to keep her on the topamax and see what happened and if they came back. It was smooth sai;ing for about a month 1/2. We went in for a check up and all was well. The kind nurse practioner even gave me some free samples of topamax. She knew that our insurance covered NOTHING and at this point after all the tests and thigns we were about $18,000 in debt. I thanked her and and went home. I started my daughter on the topamax samples after her prescription ran out. Two or Three days later I almost fell to the floor when I saw her head bob came back.

I couldn't believe it, I just wanted to die. I knew that if we all had to go through this again the outcome was just not going to be a goodone for anyone.

I took a deep breath and suddenly remembered all the things I learned on this board about ingredients! My daughter was taking topamax in the sprinkle cap form but the ones the nurse gave me were in a tablet form. For the heck of it I researched the ingredients and WOW they were different. I quickly called in to get her old prescription renewed and refilled and started her back on the sprinkle cap form the next day. One day later...the tics were gone again.

Its been almost 3 months now and we are back to the family we used to be. My daughter is SO HAPPY! I have her back!!! We sing, we dance, we play, we make cookies, we do everything together. I LOVE this little girl so much and to think back on what I turned her life into will always be hard to forgive myself.

I lost so much time with her! The tics ran my life and then they took hers over.

I know how most of you feel about meds and I can assure you that I did my research well. Topamax is used to treat migraines, seizures and is also being recently used for weight loss. Its the only med that does not cause that Tardive thing (movement disorder). It does have some scary side effects like tingling, kidney stones but this is in high adult doses from 50 to 400 mg. My daughter started at only 15mg and after a week we went up to 25mg. We are staying here and I will never increase. The neuro continues to push an increase stating that she is at too low of a dose for her weight but I have and will continue to REFUSE. This low dose has never caused any issues for my daughter. The first week on it I noticed that she lost her temper a little more but as fast as I got concerned...it went away and never came back. She is not tired like most tic meds make you and she has not gained or lost any weight. She is still 5 years old but had enough maturity to tell me that she NEVER wants to stop taking her medicine. She asks me for it every night after dinner. We continued to eat well and healthy, we always did before this anyhow so there is not a big change there. But sometimes we go out and she eats WHATEVER SHE WANTS!!!!! Sometimes we go to Mcdonalds TOO!!!

She swims everyday again and we make it a point to go to EVERY BIRTHDAY PARTY we get invited to and I let her have all the cake and ice-cream SHE WANTS!! She even eats the same snacks as everyone else does in school now.

She turns 6 in a few weeks and Monday was her first day in Kindergarden!! SHE LOVED IT!!!!!!!!!!!!

The only other thing she takes other than topamax is a good multivitamin.

Well I am sure this turned into a novel! I just felt so compelled to share our success with topamax to everyone.

Hopefully one day she won't need medicine but today she does and I am okay with that now. One thing I have learned through this whole ordeal is what really counts is the QUALITY of life. It is for us anyhow. Have a nice night everyone and I sure do wish gods speed on anyone who needs it. Also a big hello to all my friends here and a BIG Thank You to all of you who have helped me through one of the most difficult times of my life.

[Lindam]

I CAME ON THIS SITE BECAUSE MY SON STARTED TO GET A TIC AND I WAS LIKE EVERYONE ELSE --RESEARCHING! HE HAD GOTTEN A COLD AT SCHOOL AND WAS ON ANITBIOTICS(PUT HIM ON PROBIOTICS)--BUT IT HAD STARTED BEFORE THAT BUT THIS INTENSIFIED IT--ANYWAY TO MAKE A LONG STORY SHORT--I AM INTO ALL NATURAL MEDICINE AND AS I WAS RESEARCHING TICS, I FOUND OUT THAT IT IS A MAGNESIUM DEFICIENCY! I GAVE HIM AN EPSOM SALT BATH(PURE MAGNESIUM IN EPSOM SALT THAT WILL SAOK INTO THE BODY) AND I ORDERED SOME IONIC LIQUID MAGNESIUM CONCENTRATE ONLINE FOR $4.50 A BOTTLE, AND I LOOKED UP FOODS HIGH IN MAGNESIUM TO GIVE HIM. THE TIC IS GONE! HE HAD THE EYE BLINKING ONE LAST YEAR THIS YEAR IT WAS THE HEAD AND NOSE SNIFFING. IF YOU LOOK UP MAGNESIUM--TWITCHING(TICS) IS A SIDE EFFECT OF LOW OR DEFICIENT LEVELS IN THE BODY--YOU NEED CALCIUM, VIT C AND D TO ABSORB.

 

SO IN SHORT--ALL THESE KIDS WITH TICS ARE DEFICIENT IN MAGNESIUM!!!!

[guy123]

SO IN SHORT--ALL THESE KIDS WITH TICS ARE DEFICIENT IN MAGNESIUM!!!!

 

Aaand no.

[mjk500]

,I too went for over a year of doing research. Constantly on the internet, reading, talking with doctors all of the United States trying to find a solution for my sons ticks and OCD. One day he woke up blinking his eyes. Lasted about 2 months. Took him to his doctor every week asking him why this was happening . He said it is normal and kids just get ticks. Then about 2 months later they stopped and about a month later started up again. This time worse. It then went away again and about 5 months later after getting 4 teeth pulled all at once, he woke up with a neck jerking motion. That went on for about 2 weeks, then it was wrist jerking and leg jerking. This went on for months along with major OCD as well. He would freak out if anyone even sat on his bed. He was full of anxiety and especially due to separation. I also noticed that he was having difficulty breathing. His nose was completely stuffed up too. I thought it might be allergies. I once again went back to our family doctor asking him for help. He kept saying, nothing was wrong, kids get ticks and they go away. They come and go. I then did research on Tourettes and it mentioned Pandas. I went back to our doctor and asked if Pandas was a possibility since the ticking came on very suddenly and OCD as well. He had turned into a different child overnight. He said that he would test for strep. He tested positive. By now, it was too late, he had already had the strep for months and the bad proteins had developed and they were attacking the Basil Ganglia of his brain creating the movement disorder and the OCD. The doc put him on antibiotics and they did not work, which I hear is common with Pandas. We then took our son to a infectious disease doc in San Francisco who put him immediately on a strong antibiotic cocktail of 3 different antibiotics. She was determined to eradicate it. She and another doctor in Texas said he should have his tonsils and adnoids removed immediately. It lives in the nasal pharnyx cavity of children supposedly. The strep was everywhere. In his adnoids, blood, gut everywhere. It was even coming out of his nostrils. We also had a Pandas test which was Positive! We had the operation and did the antibiotics. He has never had another tick since. His breathing is perfect. No more allergies. No more stuffy noses. No more OCD . I have my child back! He seems totally healthy. It has been a year now and he will be 10 in Jan. We are on a program right now with a doctor on the east coast. I give him over 40 herbs a day. No dairy, no wheat, no gluten, no casein no meat. He also uses a great product called XClear. It is a nose spray. We all use it twice a day. Kills strep on contact. He also gargles with Biotene Mouthwash every day. Takes 2,000mg. of vitamin C/sodium ascorbate daily and lots of cranberry. Our Doctor has a strep protocol and believes that by following it carefully it will keep the gut in balance and make it an environment where strep can't survive any longer.

It has been a long journey for us. I too have become incredibly neurotic. I worry everytime he gets invited to a birthday party or goes to a friends house. My relatives think I am nuts! My husband and I almost got divorced last year because of the stress of it all. The year he was so sick, I couldn't leave the house, I saw nobody that I knew. I didn't go to work and I lost 28 pounds. We almost lost our house due to this. Every time I had a phone consultation it cost 300.00. This website saved my Life and sanity! Even though my son is back, I never take a day of it for granted. Every day, I make sure that he eats well, takes his smoothies and most important his C and nose spray. The bad protein that he developed from the strep will never go away. If he ever gets strep again, he will get those same symptoms all over again. My mission is to hopefully keep him from ever getting it again. It is suppose to disappear after puberty. I think I can hang in there until then. So far , so good.

 

Dominique

[mjk500]

Dominigue -

 

I beleive I am going through something similar (and me too...nerve racking). Could you say what the cocktail cosisted of? Thanks for the emotional help. Michael

 

,I too went for over a year of doing research. Constantly on the internet, reading, talking with doctors all of the United States trying to find a solution for my sons ticks and OCD. One day he woke up blinking his eyes. Lasted about 2 months. Took him to his doctor every week asking him why this was happening . He said it is normal and kids just get ticks. Then about 2 months later they stopped and about a month later started up again. This time worse. It then went away again and about 5 months later after getting 4 teeth pulled all at once, he woke up with a neck jerking motion. That went on for about 2 weeks, then it was wrist jerking and leg jerking. This went on for months along with major OCD as well. He would freak out if anyone even sat on his bed. He was full of anxiety and especially due to separation. I also noticed that he was having difficulty breathing. His nose was completely stuffed up too. I thought it might be allergies. I once again went back to our family doctor asking him for help. He kept saying, nothing was wrong, kids get ticks and they go away. They come and go. I then did research on Tourettes and it mentioned Pandas. I went back to our doctor and asked if Pandas was a possibility since the ticking came on very suddenly and OCD as well. He had turned into a different child overnight. He said that he would test for strep. He tested positive. By now, it was too late, he had already had the strep for months and the bad proteins had developed and they were attacking the Basil Ganglia of his brain creating the movement disorder and the OCD. The doc put him on antibiotics and they did not work, which I hear is common with Pandas. We then took our son to a infectious disease doc in San Francisco who put him immediately on a strong antibiotic cocktail of 3 different antibiotics. She was determined to eradicate it. She and another doctor in Texas said he should have his tonsils and adnoids removed immediately. It lives in the nasal pharnyx cavity of children supposedly. The strep was everywhere. In his adnoids, blood, gut everywhere. It was even coming out of his nostrils. We also had a Pandas test which was Positive! We had the operation and did the antibiotics. He has never had another tick since. His breathing is perfect. No more allergies. No more stuffy noses. No more OCD . I have my child back! He seems totally healthy. It has been a year now and he will be 10 in Jan. We are on a program right now with a doctor on the east coast. I give him over 40 herbs a day. No dairy, no wheat, no gluten, no casein no meat. He also uses a great product called XClear. It is a nose spray. We all use it twice a day. Kills strep on contact. He also gargles with Biotene Mouthwash every day. Takes 2,000mg. of vitamin C/sodium ascorbate daily and lots of cranberry. Our Doctor has a strep protocol and believes that by following it carefully it will keep the gut in balance and make it an environment where strep can't survive any longer.

It has been a long journey for us. I too have become incredibly neurotic. I worry everytime he gets invited to a birthday party or goes to a friends house. My relatives think I am nuts! My husband and I almost got divorced last year because of the stress of it all. The year he was so sick, I couldn't leave the house, I saw nobody that I knew. I didn't go to work and I lost 28 pounds. We almost lost our house due to this. Every time I had a phone consultation it cost 300.00. This website saved my Life and sanity! Even though my son is back, I never take a day of it for granted. Every day, I make sure that he eats well, takes his smoothies and most important his C and nose spray. The bad protein that he developed from the strep will never go away. If he ever gets strep again, he will get those same symptoms all over again. My mission is to hopefully keep him from ever getting it again. It is suppose to disappear after puberty. I think I can hang in there until then. So far , so good.

 

Dominique

[EAMom]

Guy123,

You do crack me up!

[guy123]

Guy123,

You do crack me up!

 

lol. I was gonna respond with a *blush* smiley but there isn't one in the list

[lss]

,I too went for over a year of doing research. Constantly on the internet, reading, talking with doctors all of the United States trying to find a solution for my sons ticks and OCD. One day he woke up blinking his eyes. Lasted about 2 months. Took him to his doctor every week asking him why this was happening . He said it is normal and kids just get ticks. Then about 2 months later they stopped and about a month later started up again. This time worse. It then went away again and about 5 months later after getting 4 teeth pulled all at once, he woke up with a neck jerking motion. That went on for about 2 weeks, then it was wrist jerking and leg jerking. This went on for months along with major OCD as well. He would freak out if anyone even sat on his bed. He was full of anxiety and especially due to separation. I also noticed that he was having difficulty breathing. His nose was completely stuffed up too. I thought it might be allergies. I once again went back to our family doctor asking him for help. He kept saying, nothing was wrong, kids get ticks and they go away. They come and go. I then did research on Tourettes and it mentioned Pandas. I went back to our doctor and asked if Pandas was a possibility since the ticking came on very suddenly and OCD as well. He had turned into a different child overnight. He said that he would test for strep. He tested positive. By now, it was too late, he had already had the strep for months and the bad proteins had developed and they were attacking the Basil Ganglia of his brain creating the movement disorder and the OCD. The doc put him on antibiotics and they did not work, which I hear is common with Pandas. We then took our son to a infectious disease doc in San Francisco who put him immediately on a strong antibiotic cocktail of 3 different antibiotics. She was determined to eradicate it. She and another doctor in Texas said he should have his tonsils and adnoids removed immediately. It lives in the nasal pharnyx cavity of children supposedly. The strep was everywhere. In his adnoids, blood, gut everywhere. It was even coming out of his nostrils. We also had a Pandas test which was Positive! We had the operation and did the antibiotics. He has never had another tick since. His breathing is perfect. No more allergies. No more stuffy noses. No more OCD . I have my child back! He seems totally healthy. It has been a year now and he will be 10 in Jan. We are on a program right now with a doctor on the east coast. I give him over 40 herbs a day. No dairy, no wheat, no gluten, no casein no meat. He also uses a great product called XClear. It is a nose spray. We all use it twice a day. Kills strep on contact. He also gargles with Biotene Mouthwash every day. Takes 2,000mg. of vitamin C/sodium ascorbate daily and lots of cranberry. Our Doctor has a strep protocol and believes that by following it carefully it will keep the gut in balance and make it an environment where strep can't survive any longer.

It has been a long journey for us. I too have become incredibly neurotic. I worry everytime he gets invited to a birthday party or goes to a friends house. My relatives think I am nuts! My husband and I almost got divorced last year because of the stress of it all. The year he was so sick, I couldn't leave the house, I saw nobody that I knew. I didn't go to work and I lost 28 pounds. We almost lost our house due to this. Every time I had a phone consultation it cost 300.00. This website saved my Life and sanity! Even though my son is back, I never take a day of it for granted. Every day, I make sure that he eats well, takes his smoothies and most important his C and nose spray. The bad protein that he developed from the strep will never go away. If he ever gets strep again, he will get those same symptoms all over again. My mission is to hopefully keep him from ever getting it again. It is suppose to disappear after puberty. I think I can hang in there until then. So far , so good.

 

Dominique

 

Hi Dominique,

 

Where in Texas and what Doctor did you see? I too had my son's tonsils and adnoids removed and he was fine for about 1 week after then the tics started again, went away and recently came back after going to school and possibly being exposed to bacterial or viral infection.

Thanks,

Ls