TICS gone 100%

[myrose]

First of all Thak You to everyone who has answered and helped me. There were so many replies and I am not through reading them all therefor have not replied to all of them yet. The responses on these boards are wonderful and so AGAIN THANK YOU TO ALL who have helped and answered my posts with suggestions, answers and advice....

My daughter was prescribed amoxicillin (liquid form 1 1/2 teaspoon per day). She was prescribed this for strep throat.

This is our first time having strep and also her very first time on any kind of antibiotic. She will be 6 years old in September. Started with eye blinking, abdominal tensing, toe scrunching in Nov-Dec 06 than progressed to shoulder shrugging and body jerking.

The latest was a foot stomping that slowly went away while she was precribed nasonex.

Now on day 4 of antibitoic the foot stomping has gone and nothing has come in its place.

We have always ate a very good natural diet, no preservitives and sweets except at birthdays parties. I also have never used toxic cleaners in the home including laundry detergent and fabric softner. We did install a hep filter in her room though a bit back.

So now I am completely confused to say the least. Do tics go away and then come back???

She even had Valentines Day sweets at school and at home and still nothing!

What is going on now????????????????????? I am going completely CRAZY trying to figure it all out. I was in the process of trying to get to gainsville to see Dr. Murphy but I would not want to go now without symptoms????????

I truly wish this WHOLE thing would just go away for EVERYONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am getting so exhausted and overwhelmed on the reading and trying to figure out the next best steps for us and now this!

Can someone relate to this experience at all????????????

 

Again THANK YOU to everyone who has been so helpful with all the advice, suggections etc...

God Bless everyone of you and I wish Gods Speed for all of us.

[LisaMC]

Hello, I missed the original question, but regarding the mother with the child with tics, when did all this start with your child? i have alot of information for you but i missed the whole story. do not miss any of your antibiotic doses, if you do not reply right away i will not be able to check this post until monday.

[Chemar]

Hi

 

the fact that the antibiotic has stopped the tics is a very BIG pointer that your child may have PANDAS

 

I am not a PANDAS mom so will leave the details to others who are, but it would be really good to keep your appt with Dr Murphy as she can run the blood tests for antibody titres and confirm the PANDAS dx, if this is what it is, and advise on maintained (prophylactic) antibiotic treatment

[myrose]

Hi

 

the fact that the antibiotic has stopped the tics is a very BIG pointer that your child may have PANDAS

 

I am not a PANDAS mom so will leave the details to others who are, but it would be really good to keep your appt with Dr Murphy as she can run the blood tests for antibody titres and confirm the PANDAS dx, if this is what it is, and advise on maintained (prophylactic) antibiotic treatment

 

Hello Chemar and Thank You so much for your reply and advice. Her neurologist did check for Pandas through bloodwork. He checked TSH, antistreptolysin O Ab, Anti-DNase B Strep Antibodies, Venipuncture.

 

He said it was all normal. This was in August 07 (our first neurology visit) also he did the MRI, EEG as well.

Everything normal according to him.

So I am truly confused to say the least......

[myrose]

Hello, I missed the original question, but regarding the mother with the child with tics, when did all this start with your child? i have alot of information for you but i missed the whole story. do not miss any of your antibiotic doses, if you do not reply right away i will not be able to check this post until monday.

 

 

It all started around 3 years of age. First with adominal tensing, toe scrunching and then the eye blinking. After her eye test came out okay it stopped. Then she started with shoulder shrugs and sort of a body jerk. She was brought to see a neurolgist but all tests (MRI, EEG, and Blood work) came out all normal. Including the ones done for Pandas. This was in August 07.

Thank You so much for your reply, I truly appreciate it.

[P_Mom]

Yes, I agree with Chemar.

 

Both my kids are PANDAS and respond to antibiotics, yet, neither one ever had positive results for high strep titers! My older sons ASO was borderline, (still normal), but, both had low AntiDNAase B titers. (my older son showed high levels for Epstein Barr virus)

I did not get the tests run until 3, 3 1/2 months after strep and I missed the boat. Kids titer levels come back to normal at drastically different time levels, some stay elevated for years! In our case, they were normal 3 months later. It is important to get the tests run when symptoms are at their worst after strep. Also, other illness can set this reaction off, so, don't get stuck on the strep, titer issue for a definite diagnosis of PANDAS. If antibiotics help, you are more than likely dealing with an autoimmune process resulting from illness that results in tics. Both my sons are on prophylactic antibiotics and doing well. They have a viral now and are barely showing any symptoms. Before antibiotics, they showed many.

 

Kelly

[faith]

Kelly,

Just curious, both your sons have had tics? I was under impression you were speaking of one. Are they both taking the antibiotic (which one?) prophalactic because it keeps the tics down? I noticed you were inquiring about doctors to do other tests, do they still have tics or other issues?

 

Faith

[LisaMC]

Hello! i completely agree with DKRESmith, do not get stuck on the tests any of them for strep or strep titers. My daughter woke up one morning at 7 years old and was a completely different child, she was repeating her self over and over and having horrible thoughts she could not get out of her head, she had OCD overnite! She had just had strep a couple weeks before! of course it took us a week of hospitals and doctors before they came up with the pandas diagnosis, and some doctors do not believe it exists but let me tell you it DOES!!

 

My daughter takes one 250 mg amoxicillin tablet once a day, for five years now! i will encourage her to always take it her entire life! My belief after the nightmare we went through with her and all the doctors , physcologists, physciatrists and all my research is that do not take strep throat lightly. Certain children have a genetic predisposition to rhuematic fever, this will create a PANDAS child! The strep antibodies in the childs body that are used to fight off strep bacteria become too numerous from constant exposure to strep in school and the antibodies turn around and attack the childrens body. They can attack the heart , the kidneys , and what we are seeing the basal ganglia area of the brain! This area when invaded , damaged or scarred , creates OCD. TICs , Anorexia , and so on? Now obviously there are other reasons that this area becomes damaged, it is not always strep.

 

My daughter was diagnosed at the cleveland clinic foundation, but after they diagnosed her they really had no treatment plan so with help from here and there we came up with one. My pediatrician who is more a local doctor had a hard time grasping this whole idea, he had not seen this very often, he did tell me last week he had a mother call frantic, that her young son was threatening to kill her and he could not get the bad thoughts out of his head, my doctor thought back to my daughter and said by any chance does he have a sore throat?? she said well last week he did but its gone and what does that have to do with anything!! he had her son brought in and he was positive for strep.

 

The symtoms for OCD are endless, but basically some type of repetitive thoughts. The psychiatrist told me alot of the kids with OCD also have the tics. alot of the offs and ons of this strange behavior in children is due to exposure to strep or i should say overexposure! Your child started young but young children can get strep

throat. i now have to watch my 6 year old son for symptoms! i am not a doctor or in any type of medical field professionally but let me tell you i have been through the medical field as a mom. I firmly believe that strep throat is responsible for most cases in children of OCD, Tics or Tourettes, Anorexia, and anger problems in children ( as long as home life is stable). children with these symptoms occuring more than one episode need to be on antibiotics low dose oncle a day. My daughter symptoms took about 6-8 months to go away, she has never had strep since that time and never had another ocd attack. you can still see some mild after-effects from the whole thing, i am so scared to ever have her miss an dose of amoxicillin, they said that can leave just enough of a window for her to get it again.

 

One more note, when i was at the Cleveland Clinic emergency room with her, the intern told me they had recently had a young boy in who suddenly stopped talking (selective mutism) when checked he had strep, when treated he began to talk again!

 

Sorry for taking so much space, i am just so glad to have people to talk to who know what i am talking about!

[P_Mom]

Lisa,

Right On!!! Sounds like you occupy a little space in my mind!

AMEN!! I may actually not be nuts!! You got me 100% on that one!

 

Kelly

[P_Mom]

Faith,

Yes, I have two boys with this. My youngest manifest first and worst, so, when I began to post, it was only regarding him. He manifest 3 days after strep, my older son manifest about 6 weeks after. This was my younger sons second episode and my older son's first episode, that is why the time frame difference. With each episode of strep, symptoms come on faster and harder. They are both on Pen VK twice daily and doing well. My younger has/had tics and bad ocd, my older manifest with mostly tics and some mild ADHD issues. I do believe once their systems are set into motion for this..any sensitivity can aggravate it, that is why I want testing done just to make sure I am not missing anything.

 

God Bless.

Kelly

[michele]

Lisa,

We go to Cleve Clinic and see Dr Erenberg. Who do you see? We have never been able to get him to use PANDAS as a diagnosis. He usually says transient tic disorder with minor obsessive and attention issues. He does nott believe in iet playing a roll at all. So basically he ony observes him, talks to us and then sends us on our way. We have never gotten any meds from him. He does send forms for his teacher. I guess we are documenting for the future. I just wondered if you had a Dr.there at the clinic who believes in PANDAS and will treat it. We did find a Dr. at University in immunology who would prescribe antibiotics. We have been dealing with this for five years too. I'd like to know your doctor because I am yet a Dr. who knows from experience of another PANDAS opatient how to treat. Have you ever tried other meds?

 

Michele

 

 

Hello! i completely agree with DKRESmith, do not get stuck on the tests any of them for strep or strep titers. My daughter woke up one morning at 7 years old and was a completely different child, she was repeating her self over and over and having horrible thoughts she could not get out of her head, she had OCD overnite! She had just had strep a couple weeks before! of course it took us a week of hospitals and doctors before they came up with the pandas diagnosis, and some doctors do not believe it exists but let me tell you it DOES!!

 

My daughter takes one 250 mg amoxicillin tablet once a day, for five years now! i will encourage her to always take it her entire life! My belief after the nightmare we went through with her and all the doctors , physcologists, physciatrists and all my research is that do not take strep throat lightly. Certain children have a genetic predisposition to rhuematic fever, this will create a PANDAS child! The strep antibodies in the childs body that are used to fight off strep bacteria become too numerous from constant exposure to strep in school and the antibodies turn around and attack the childrens body. They can attack the heart , the kidneys , and what we are seeing the basal ganglia area of the brain! This area when invaded , damaged or scarred , creates OCD. TICs , Anorexia , and so on? Now obviously there are other reasons that this area becomes damaged, it is not always strep.

 

My daughter was diagnosed at the cleveland clinic foundation, but after they diagnosed her they really had no treatment plan so with help from here and there we came up with one. My pediatrician who is more a local doctor had a hard time grasping this whole idea, he had not seen this very often, he did tell me last week he had a mother call frantic, that her young son was threatening to kill her and he could not get the bad thoughts out of his head, my doctor thought back to my daughter and said by any chance does he have a sore throat?? she said well last week he did but its gone and what does that have to do with anything!! he had her son brought in and he was positive for strep.

 

The symtoms for OCD are endless, but basically some type of repetitive thoughts. The psychiatrist told me alot of the kids with OCD also have the tics. alot of the offs and ons of this strange behavior in children is due to exposure to strep or i should say overexposure! Your child started young but young children can get strep

throat. i now have to watch my 6 year old son for symptoms! i am not a doctor or in any type of medical field professionally but let me tell you i have been through the medical field as a mom. I firmly believe that strep throat is responsible for most cases in children of OCD, Tics or Tourettes, Anorexia, and anger problems in children ( as long as home life is stable). children with these symptoms occuring more than one episode need to be on antibiotics low dose oncle a day. My daughter symptoms took about 6-8 months to go away, she has never had strep since that time and never had another ocd attack. you can still see some mild after-effects from the whole thing, i am so scared to ever have her miss an dose of amoxicillin, they said that can leave just enough of a window for her to get it again.

 

One more note, when i was at the Cleveland Clinic emergency room with her, the intern told me they had recently had a young boy in who suddenly stopped talking (selective mutism) when checked he had strep, when treated he began to talk again!

 

Sorry for taking so much space, i am just so glad to have people to talk to who know what i am talking about!

[judy1270]

First of all That You to everyone who has answered and helped me. There were so many replies and I am not through reading them all therefor have not replied to all of them yet. The responses on these boards are wonderful and so AGAIN THANK YOU TO ALL who have helped and answered my posts with suggestions, answers and advice....

My daughter was prescribed amoxicillin (liquid form 1 1/2 teaspoon per day). She was prescribed this for strep throat.

This is our first time having strep and also her very first time on any kind of antibiotic. She will be 6 years old in September. Started with eye blinking, abdominal tensing, toe scrunching in Nov-Dec 06 than progressed to shoulder shrugging and body jerking.

The latest was a foot stomping that slowly went away while she was prescribed nasonex.

Now on day 4 of antibiotic the foot stomping has gone and nothing has come in its place.

We have always ate a very good natural diet, no preservatives and sweets except at birthdays parties. I also have never used toxic cleaners in the home including laundry detergent and fabric softener. We did install a hep filter in her room though a bit back.

So now I am completely confused to say the least. Do tics go away and then come back???

She even had Valentines Day sweets at school and at home and still nothing!

What is going on now????????????????????? I am going completely CRAZY trying to figure it all out. I was in the process of trying to get to gainesville to see Dr. Murphy but I would not want to go now without symptoms????????

I truly wish this WHOLE thing would just go away for EVERYONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am getting so exhausted and overwhelmed on the reading and trying to figure out the next best steps for us and now this!

Can someone relate to this experience at all????????????

 

Again THANK YOU to everyone who has been so helpful with all the advice, suggestions etc...

God Bless everyone of you and I wish Gods Speed for all of us.

That is great news I am so happy for you. I have a question for you. How long did it take for the penicillin to work stopping the tics. My grandson was put on penicilln the 19th, and the tics have slowed down but not gone yet.

Thank you, Judy

[kkver]

judy

 

It will depend on type of antibiotic how it reacts to the specific child. Some gives pretty good response with penicilln and some with zithormax , amoxicilian or omnicef. I have seen kids getting better by the end of 24 hours like 50% and by end of day 4 or 5 they will go between 97 to 100% but chances are you might see them back either full or in milder form after antibiotics. After reading posts here some kids needs to be kept on antibiotic for long periods ( 1 to 2 yrs + ) and some might get better with time.