Newbie

[Amy B]

Hi just wanted to say hi. My name is Amy and I have been reading on and off for a while hoping my son would get better. A lot of the the topics you discuss are a wealth of information and at same time way over my head. I am at a loss as my 7 year old son is a Pandas kid. While away in Aug. 08 he had what we thought was a cold, no big deal right. In less than a week he had full blown tourettes. It was devastating. He could not control himself at all. He could not walk with out jumping, twitiching, head banging, head twitching, grunting and barking. WE soon found out that he indeed had a strep infection. Thus the neurologist said that it was Pandas and ADHD. Yet they only would prescribe a two week dose of the antibiotic. His tics slowly subsided, it took a long time (months). They preferred and pushed the clonide and tenex, etc. He is on clonodine one Mg (one tablet) per day. I don't find it too helpful, unsure. They did not and do want to prescribe him the antibiotics. I don't understand. He is suffering. We are all suffering. When school began last year (kindergarten), it was hard for everyone because his vocal tics were so loud and hindered the teaching and learning for all in his class. He still grunts, clears his throat, groans, mouth tics, and eye movement thing. He is now in full day 1st grade and it's difficult for him academically and concentration. His teacher has told us he had been wandering around (lost). Cannot sit still to get his work done and school work seem to be getting the better of him lately. Although I spend at least 1.5 hours with him on the home work each night. His behavior and attitude gets so bad when he gets sick. He angers easily and will cry at the drop of a hat. It is truly unbelievable. I think he does have strep now or just recently. He has gone off the deep end. I have been in the pediatricians office at least once a month for the strep test. They have been neg. The last time was 3 weeks ago and neg. How can that be when I know he is Pandas sick. I can see it and I live with it. How can he have all the symptoms but a negative test. And since it is negative know one will listen. I'm afraid we need to start all over again with another neurologist. Although his current neurologist is at Children's Boston. He cannot seem to help us any further. Why are some kids getting helped (antibiotics) and others are not. Any thoughts or suggestions would be greatly appreciated. Also any suggestions of a doctor or neurologist in MA would be so helpful. Sorry for the long read it has been a tough day. Hope tomorrow will be better.

[sf_mom]

So sorry to hear your son is sick! I've attached a simple to read article.... with comments from both Susan Swedo and Madeleine Cunningham (you may have seen this already). Its possible why your son is now reacting to any cold or virus and the reason for the negative strep tests.

 

How Does Strep Lead to Psychiatric Symptoms?

 

The discovery of PANDAS came through observing the reactions of patients. Initially, Swedo's team noticed a group of patients who were ill with infections and then suddenly developed dramatic psychiatric symptoms. At first, they were not sure streptococcus was the culprit but research soon isolated the strep antibodies as an important focus of interest.

 

PANDAS is controversial in medical circles with some physicians questioning whether such extreme psychiatric symptoms can be triggered by strep antibodies. However, according to Dr. Swedo, there is little doubt that the body's efforts to fight the strep bacteria set off a chain of events leading to PANDAS symptoms. "The science is clear now," Swedo asserts. "We not only have a direct relationship between the anti-strep antibodies and the anti-neuronal antibodies, but also have demonstrated that the antibodies interact with receptors in the brain that could produce the symptoms observed."

 

Normally when the strep bacteria enter the body, they defend themselves by mimicking healthy cells and elude detection by the immune system. Using the stealth strategy, the strep bacteria create an infection. In response, the body naturally creates antibodies - cellular components designed to find the bacteria, bind with them and direct the immune system to destroy the bacteria. When this happens as designed, the antibodies find the strep bacteria and the immune system wins the battle.

 

However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion.

 

Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

[Kayanne]

Hi Amy, so sorry that you need to be here...but it is the best place for advice and learning about PANDAS...and for virtual hugs.

 

This thread has a couple of links to Susan Swedo (one of the original researchers) talking about PANDAS. Watch her speeches...they are like PANDAS 101.

 

http://www.latitudes.org/forums/index.php?showtopic=3739&hl=Swedo

 

you can email info@savingsammy.net Beth Maloney is compiling a list of PANDAS doctors.

 

Also go to www.pandasnetwork.org and give them your info, and Diana will try to get you the name of a doctor.

 

This thread also lists helpful doctors:

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

Can you tell us what antibiotic and dose your son was originally put on for those two weeks? What does your son currently weigh?

 

Does your son also have OCD?

 

My daughter is 6 yrs old, and had her first recognizable PANDAS episode this spring when we had several strep infections at our house. She also seemed to be ADD at first, and was very emotional.

 

I think he does have strep now or just recently. He has gone off the deep end. I have been in the pediatricians office at least once a month for the strep test. They have been neg. The last time was 3 weeks ago and neg. How can that be when I know he is Pandas sick.

 

So he has not been put on antibiotics at all this time? Are they only doing one swab, and testing it in the office or are they also sending it out to a lab for a culture? They are probably just doing the rapid-strep test in the office.

 

Strep can be many places in the body, not just the throat...sinuses, middle ear, skin, vagina, rectal, in the gut...you get the picture?

 

Many parents have found that they need to insist that the dr send out a sample for a 72 hr culture because the rapid in-office test is not as accurate.

 

You can also ask for a blood test that tests for Anti-Dnase and ASO strep titers. These are antibodies that your body produces in response to toxins that the strep bacteria produce. They are not the antibodies that are the problem in PANDAS. At the very least, if these antibody numbers are high, then your dr will know that he has had a strep infection in the prior 3-6/6-8 weeks. I think most drs will prescribe antibiotics if these numbers are high, although you might get a dr who argues that these tests only prove a past infection.

 

Another problem with the ASO and Anti-Dnase tests--many PANDAS kids DO NOT get a rise in these titers...so if the numbers come back normal it DOES NOT mean that your son dosen't have PANDAS...many drs are under the false impression that these are tests for PANDAS, and they are not--THIS TEST COULD BACK FIRE ON YOU.

 

This is very IMPORTANT--make sure everyone in you house also gets tested for strep.

[thereishope]

Welcome. My first question is if the dr office also cultured all the strep tests or did they only do rapids? Was he on antibiotics when he had the strep test done? Also, like mentioned above, you can have setbacks with viruses,stress,a or allergies. My son had a very bad setback with allergies. The behvaiors surface about a week or two before I realized what was going on. Like you, I got a negative strep test and that led to a lot of confusion. For my son, once I got his allergies under control, the behvaior stabilized and put back on track to recovery.

[T_Mom]

Hi Amy--I too am so sorry you are going through this with your son--

 

You have gotten pearls of knowledge from the links in the post by Kayanne--I know you will benefit from those sites.

 

Our experience has been that the "diagnosis" of whether or not it is "Pandas" rests more with the response to treatment than with an obvious strep connection. My d had sudden onset anorexia (lasted 3 months) and then left, at age 9. Six months later she was hit with overwhelming OCD (first time with bazaare behaviors, and tics.) She gets better and stays better with antibiotics--thus far.

 

The understanding of this (I believe from the NIH website) is that once a child is "triggered" to have an autoimmune response and the basal ganglia is attacked, than ANY illness has potential to trigger a reaction which can result in the autoimmune response/attacking the brain--IT DOES NOT HAVE TO BE STREP AFTER THE "FIRST" TIME. The few strep tests and titer blood draws (3 times) were never positive for my d--BUT the pattern of illness+OCD and tic exacerbation fits -- and her OCD (and tics) can be controlled so far with antibiotics. We believe she had untreated strep at some point.

 

Her tics were mild but Dr Susan Perlmutter made a point that we should always tell doctors that she had OCD WITH tics present--

 

Last, if you "click" on a person's name and go to their "site", then click on "options" box you can pull up all of their posts (or topics they have started.) I have found this to be very helpful to read a family story over a year or two or longer--fascinating, and helpful.

 

Best--TMom

[EAMom]

Last, if you "click" on a person's name and go to their "site", then click on "options" box you can pull up all of their posts (or topics they have started.) I have found this to be very helpful to read a family story over a year or two or longer--fascinating, and helpful.

 

oh my gosh T.mom! I was wondering how to do this. Dh didn't know either. Thank you!

[EAMom]

HI Amy,

 

Ugghh...it is so annoying to have to keep dealing with all these blockhead doctors.

 

T.Mom, Vickie, Kayanne have already given you lots of good info.

 

Yes...long term antibiotics (at good doses) are really necessary for PANDAS kids. For some kids that isn't enough (and sometimes you need to try 2-3 different abs to find one that works), and then the next steps are a steroid burst (sometimes dianostic, but sometimes for treatment) and IVIG (or plasma exchange) with continued antibiotics until well past puberty.

 

Different kids respond best to different abs...a lot seem to have success with Azith. or Augmentin. For us, Azith. was best (antibiotic #4) which we discovered 2 mo. into starting abs/PANDAS diagnosis. (We had tried Augmentin, but not at the super high Saving Sammy doses, cefuroxime, and amoxcillin).

 

It might also be helpful to contact Dr. Cunningham and run bloodwork through her...sometimes confirming the diagnosis that way helps convince doubtful docs to treat. Our immunologist aggreed to IVIG for our dd based on Dr. Cunningham's results. (Best to do the blood draw when symptomatic. However, abs don't necessarily affect results, but steroids/IVIG can.) Here's a link on that http://www.latitudes.org/forums/index.php?...gham+blood+test Her lab is closing mid nov-mid jan for the holidays so you might contact Dr. C. or Kathy Alvarez ASAP to see if you can still get a sample in. You could also ask (if your son is bad now), if you can draw the blood, spin the serum, and store it (to mail in Jan)....so you can start steroids/other treatment but still know what his values were pre-treatment.

[Amy B]

Hi thank you so much for the warm welcome. Sorry I have not replied back sooner. It has been crazy busy at home and school as you all know. I was volunteering in my son's class yesterday and just realized that my drier is shot. I have to decide on a new dryer and fast. No fun there.

 

I will try to answer everything as I rememeber so things go back more than a year. I cannot remember the exact Ab they gave him It was something that began with either Cep or Cap. I do not recall the dosage. This was what the pediatrician gave us. I did not know any better at the time. The neurologist office told me to tell the pediatrician to prescribe an antibiotic and thats what we got. He is ADHD according to the neurologist. We were not surprised. My only concern is that he can sit and learn academically. Over this past year he has had many Strep tests. Some I think may have only been the swap and otthers sent out. Only reason why I htink this now is because the office would sometimes call me and inform me if it was negative. And other times they would not call at all. I'm guessing they never sent it out.

 

I was finally at my wits end yesterday with the neurologist office. I called to speak with the nurse who is my contact and she was out of the office for the day. I left a message on her vm nearly in tears. I am at a breaking point. Another nurse called back very nice and listened. She relayed everything back to the neurolgist. His reply was he should be seeing a psychologist or psychiartrist. This in regards to his melt downs and behavior for coping methods. When he is sick it is not a normal temper tantrum where he can reason. We have met with someone before. He was very nice but that is not what we need now.

 

Ok this neurologist is suppose to be a TS and Pandas expert but does not want to give out propolactic AB. The nurse says "We don't want to hurt his little tummy;" So they would prefer to keep going up the ladder of meds with not even trying AB. Thus he keep this vivcious cycle when any illness presents himsself. I am so mad. His advice along with the meds and Psych. is "He might get better, he migth get worse, and it might just go away." Words of wisdom. I just wanted to share that with you all. I guess if he cannot go the Ab path I guess we will leave and start all over again. I wasted a year. My husbad said he was useless also. He clearly preferred talking to men rather than women. On one occasion to I guess to get me to stop asking him question he gave me pen and paper to "keep me busy" making a list of tics my son had. I only asked two questions. I have a one hour window of opportunity to ask questions every couple of months and I guess he cannot be bothered. I was very offended. I am a pretty soft spoken person. He was rude also. But to be honest with you I would have tolerated his rudeness for my son's benefit. Clearly that is was not the case. I have reached my breaking point. Sorry for the long read. But its good to vent.

 

I guess I will be starting from scratch. I just do not understand why some kids are getting the AB and others are not. Shame on all these doctors for making children and their familes suffer. I'm sorry if I sound mean. I'm really not this way.

[EAMom]

One more doc, a recommended immunologist in CT, Dr. Bouboulis:

http://www.latitudes.org/forums/index.php?...art=#entry41096

[EAMom]

I should add that many on this forum have had work-ups by immunologists. It is especially helpful b/c if some sort of an immune deficiency is found, then insurance should okay IVIG based on that. It will also give you a clue if multiple IVIG's may be needed.

[EAMom]

The nurse says "We don't want to hurt his little tummy;" So they would prefer to keep going up the ladder of meds with not even trying AB. Thus he keep this vivcious cycle when any illness presents himsself.

We don't want to hurt his little tummy...but we have no problem with hurting his little brain! I really love that logic!

[thereishope]

Where do you live? It's not Ohio, is it? The tummy comment, I heard too. The TS and PANDAS "expert", no prophylactic abs....Been there, done that. Sounds very familiar...

[thereishope]

Sorry. I reread your original post. You're from MA. Geesh. That's everything I went through. I would have sworn you lived close!

 

 

Where do you live? It's not Ohio, is it? The tummy comment, I heard too. The TS and PANDAS "expert", no prophylactic abs....Been there, done that. Sounds very familiar...