5 year old with sudden Tics

[ad_ccl]

That is great that you saw such a reduction on azithromycin - similar to our experience. I found at the beginning we would start to see tics emerge after 3-4 days, then on the 5th we started to give azith, then they would reduce again. This was a pattern but as the weeks went on the increase in tics before the antibiotics decreased to the point where we would start to forget to give the azith as he was symptom free - early on we knew the day was coming up as minor tics would emerge.

My son's titers remained elevated for two years - it was only after starting azith we actually saw a significant decrease - from about 750 to 450. We have not tested since about October or so - we plan on retesting in the summer.

 

Will your doctor allow you to go on a prophylactic dose on azith?

[kkver]

My nuerologist is kinda ok and i have a appointment tommorow with her . will see what she says about antibiotics . she was very happy to see the results last time and was happy the read the article from nimh.gov site about antibiotics. My only concern is if his titers count is low how long it will take his body to recover from tics.

[faith]

Hi kkver,

please see my post to you on the 'totally lost' thread.

Faith

[kkver]

Hi kkver,

a couple of questions for you...

the part where you mention the basal ganglia controls the motions and voice and ocd systems -- if you read that somewhere, could you tell me where I could read more on that. I mean, I know that the basal ganglia is implicated in TS, but never knew that part controled the voice and ocd. Also, where did you get the info about doing MRI for basal ganglia? Is that possible? Did you hear that from doctor, or read it somewhere? If so, could you post that info or link?

 

Did you do the zithromax as a trial or was your son having another strep or sinus? And you did indicate you once had the titers tested and they were negative? Did you ever try the carnitine?

 

Faith

Regarding Basal ganglia i read so many paapers now i hv lost track which one was pointing where. In one of the studies the MRIs were done for kids suffering with PANDAS and there was iinflammation found around that area of our mind which might result in OCD , Tics ( motor and vocal) or Both. Then i started to send emails around and found one UC San Diago doctor think Neal sprindlow who replied to my emails and confirmed it . He is a specilist in Basal ganglia and directed me to a a doctor in San Franscisco for PANDAS.Accoding to them they donot want these strep antibodies to attack the Basal ganglia at every strep infection else it will negative affect on that part of brain .So you have to pick antibiotics to keep strep away and if strep is present it should be treated with full 10 days of antibiotic course.Nancy's girl has been suffering form so long and if it was Panadas it would be better if she can get a MRI done and get a true picture

 

Zithromax trial was just a accident as he was hving a sinus infection so was given 5 days of zithromax but by 3rd tics went away so i spoke to my nuerologist and showed her pandas papers. She agreed with to go for 10 days of antibiotic course. My kid's pediatrician does't want to listen as he still does't know anything about this and nor he wants him self to educate so i gave up on him.

 

Regarding titer counts it was done with in 10 days of strep so accoding to PANDAS theory they go up after 4 to 8 weeks so i plan on getting it done again.

[hcelesteanderson]

My son had ADHD symptoms for 2-3 years. Suddenly developed frequent strep and tonsillitis. Moved to a different state (Army family, formerly Marine) and Ethan's teacher noticed not only does he hit(Since infancy he's banged his head on things), bite, and otherwise hurt himself when frustrated (which is often), but he also started compulsively smelling and blowing on his fingers. After another strep infection around last Easter he developed tics. He can't cope with the noise and activity at school and has no friends. When summer vacation began the tics seemed to disappear but now he has a new tic. He spits. His tonsils are bigger than marbles since his string of infections began nearly a year ago. He also has emotional issues from abuse from his father (who has just left me) and the death of his baby brother to SIDS in 2004. I've taken him to several doctors and the suggestions are to remove his tonsils and then drug him. When I asked for allergy and celiac testing they flat out refused. There are a lot of variables in Ethan's case so I'm confused and stressed. Oh, ther's also a very strong history of severe depression and anxiety in the family, both sides. His cousins have similar problems with the tics and ADHD symptoms. Apparently ther's a family auto-immune problem. So how do I figure out what Ethan has and how to help him? I refuse to put him on drugs and can't understand why the docs are so eager to "treat" him with drugs when we aren't even sure what it is we're treating. His cousins have only had relief from the Feingold Diet and eliminating gluten, so I'm trying that. I want to ask so many questions that my idiotic military docs just brush off. For one thing, how do I know if its PANDAS or Tourettes? He has the same problems as his cousins, but to my knowledge they never had the strep throat issues. Another thing, He was always healthy until kindergarten and by Christmas he had missed so much school from being sick they made me take him out of school. He couldn't pass even though he knew the curriculum. I had figured he was always sick cause I never sent him to daycare or preschool, But the doc said asthma. He only has symptoms when he's sick so I'm not convinced. Somebody help! I'm disabled from daily migraines and severe anxiety, I'm stranded in Bum****, Kansas, and my husband left me. Everything is falling apart. Should I let them remove my son's tonsils; would it help? I just can't risk any of these dangerous meds, but the shrink says I'm hurting my son and not letting him have a normal happy life by withholding the drugs. I'm so stressed I can't think straight!

[itsme]

Hi hcelesteanderson,

 

I'm very sorry to hear about your situation. However I am happy to tell you that you've come to the right place for the supportive help that you need right now. Me and my son have TS. He is 5 yrs old and developed it the end of last year. I have had it for 31 yrs and just always lived with it without a big deal. However, when i saw my son develope it last year i knew i had to do something. So i did a ton of research including info from this web site and many others, also Shelila Rodgers book "Tics and Tourette's" was very helpful. One of the best things I believe you can do is to try to find an environmental Dr. that can run some tests on your child. We did that and after the tests he designed a program of strict diet and vitamins. The vitamins we use are Fish oil capsules and "Bontech supplements" which can be found on the internet simply by typing in bontech supplements. With this program our son's symptoms have decreased about 95%. And the truely amazing thing is that my symptoms - for the first time in my life have decreased about 70%. So it turns out (as God whispers to me for the millionth time - "Just believe") that what i thought was our biggest curse, is really our greatest blessing!)

 

I hope this provides some help and encouragement to you. And please don't hesiate to ask us more questions and research the many helpful threads on this forum

[Cum Passus]

Hi hcelesteanderson,

 

My heart is just breaking for you and your son. ((((((((((hug))))))))) I wish I could give you a real hug. As itsme said your at the right place. Read as much as you can here, and you may find the help your drs are not providing. Try as hard as you can to use natural food to heal him. I do believe bad food is what causes some illnesses and it keeps us sick. On the other side food in the form of how God intended us to eat it can be healing.

 

Good luck,

C.P.

[patty]

Hi hcelesteanderson,

 

Welcome! You are in the right place. I would say to you before you take your current dr's advice for your son, read thru some of the threads on this board and keep asking questions. As i have been walking in this path for about a year, i learned that conventional drs do not know much about treating neurological issues using alternative methods. And often times, by making diet modification, taking vitamin supplements can make a substantial improvement to ones well being.

 

Just to let you know, my son had asthma since 5 mos. old and food sensitivities and environmental allergies, as a result of our alternative treatments to treat his tics, his asthma is gone for the last year and his allergies is improved. And most importantly, his tics are much improved as well. There is hope!

 

Also, take baby steps. Do everything is stages, otherwise you will be overwhelmed. And next thing you know you are on your way.

 

Patty

[janey]

Another Day

 

his tics reduced considerbely both motor and vocal throughout the day in the evening i started his vitamin C and saw some vocal tics returning so was wondering if it was Vitamin C which caused it to come back I will try to observe again tommorow as i start him vitamins from 5 PM to 9 pm . Has anyone seen vitamin C bringiing back the tics. kinda tough too see his days pass by but getting lot of courage from this place.

Another thing we are trying to observe is when he's engaged in some thing like puzzle , game or with some friend they kinda go away wondering Why ?

 

 

Hi,

 

I had also noticed an increase in tics when I started my son on C. I don't know if I gave too much (250mg), but I decided to stop giving the extra C.