titer levels

[jejen]

Hi, I'm new to all this chat room stuff, but I don't know where else to go for info.

My 7y.r old son has been going thru ###### for a year now. He woke up one day with tics so bad he could'nt get a glass to his mouth to drink. He also had strep. We went thru cycles for 3 months untilk we sae a nuerologist. His antidnase levels are going up, 2760. He hasn't had a pos strep in over 14 months. His dr is thinking of ivig.

 

I need a reference point of how high other peoples titers have been. Can anyone hepl? thanks jenjen

[Chemar]

Hi jenjen and a BIG WELCOME to Latitudes.

 

Ronna is our PANDAs expert but she is away for the summer.

 

I am somewhat ignorant on this as strep wasnt an issue for us, BUT I do know that you need a specialised blood test for PANDAs as it isnt just the strep that is involved, and also not just the strep that causes strep throat.

 

Often PANDAs related tics remain incorrectly diagnosed because the wrong titres are being done.

 

Also, Ronna and others found that some antibiotics just dont work. There are specific ones needed.

In addition, after antibiotic use, many people have problems with yeast (Candida) overgrowth, and this in turn can also make tics worse. A simple blood test can also indicate whether candida is a problem.

 

I am very busy with work right now, but there should be a thread here somewhere for the PANDAs experience that Ronna had...maybe see if you can find it.

 

Also try to get some input from others at BrainTalk on the

 

Tourette/Tics Forum

http://brain.hastypastry.net/forums/forumd...splay.php?f=253

 

PANDAs Forum

http://brain.hastypastry.net/forums/forumd...splay.php?f=196

 

 

 

Dont give up hope!

Many of us here can encourage you that, with the right testing and treatment, things CAN and DO get much better

Stay in touch please, especially for when Ronna gets back as she will really be able to give you lots of info

 

Cheri

[Heather]

Hi Jejen and Welcome,

 

My son was also diagnosed with PANDAS last fall, however it was based solely on his titers being elevated. To the best of my knowledge I don't believe there is a specific blood test for PANDAS per se. The diagnosis is based on elevated titers and presence of the tics or neurological symptoms. Feel free to correct me if I am wrong but that is my understanding.

 

We went through one round of antibiotics that did not help one bit. Perhaps it was the wrong antibiotic...I don't know but from that point on we started with natural supplements and having been progressing in a positive way ever since. The main problem in our case was intestinal yeast issues causing digestive problems. My son also tested high for aluminum levels which subsequently causes the yeast problems. If you read back over the threads here, these issues are all discussed in detail as many have the same problems.

 

PANDAS is an autoimmune disorder and from what I have researched autoimmune disorders are caused by digestive problems. Particles of food go undigested in the blood stream and the antibodies that are formed attack the body's own organs. The goal is to boost the immune system so to keep these antibodies under control. I suggest you read through some of the threads over the past few months. The key point is that everyone has different imbalances so it is important to have your son diagnosed by a natural doctor if that is the route you plan on taking.

 

heather

[Guest Susanna]

Hi Jejen

 

Although my 6 1/2 yr old son was never given an official diagnosis of PANDAS, just TS, his antibodies were elevated at 500.

 

He had had Strep a little over a month before his tics started this past April. At the time of the original strep infection in early March he was treated with amoxicillan. After he started ticcing and the blood work showed the elevated titer, they did a rapid strep test which came back negative but the throat culture that was sent to the lab came back positive. His ped. originally prescribed Duracef but he broke out in a rash a few days after starting that antibiotic so was switched to Augmentin. After a 10 day course they did another throat culture and this time it came back negative. He still ticced for about a week after stopping the antibiotics, but after that they virtually disappeared.

 

Concurrent with the antibiotic treatment we did also give him probiotics, tried to eliminate the junk food (i.e artifical colors, flavors, preservatives), try to limit sugar, and also saw a homeopathic pediatrician who administered a remedy which was given the same day as his last dose of his antibiotic. The tics have made brief appearances in the past few months since the end of treatment, but have been less severe and not as frequent throughout the day, and have only lasted for a few days or so. Currently he is virtually tic free. We plan to continue to see the homeopathic pediatrican as she has agreed to administer some of the tests I learned about on this site such as those for allergies, vitamin and mineral deficiencies, etc.

 

I too was new to this chat room stuff when I started searching a few months ago for information on what was happening to my son and how to help him. As a result I learned about PANDAS and suspected it in my son, and found this site from which I have learned (and am still learning) so much from the wonderful people who post here. My son's neuro doesn't buy into the PANDAS theory and just glossed over it when we went in for our initial consult with him, and therefore we only got the TS diagnosis. As others have suggested, read the threads. Perhaps one of them will hold to key to help you to help your son.