mkur

My son has these events which I have always thought were seizures so I have done a lot of reading about epilepsy. I'm currently going to try to treat the pandas and if that doesn't fix it then I am going to go back to epilepsy treatment. Dr. Orrin Devinsky, director of the epilepsy center at New York University Medical Center was with the NIH and has written lots of articles. I would start with him. He believes epilepsy can cause all kinds of symptoms - major and minor. I personally think epilepsy is under diagnosed. I am really surprised that pandas doesn't cause epilepsy - it seems like any type (physical trauma, infection, chemicals, genetic etc) of brain damage causes epilepsy.

That's really interesting mkur...sounds like it would explain tics, right? But does it cause the IBS symptoms like abdominal epilepsy? I did a quick check but I couldn't find anyone relating the two, I'll keep looking when I have more time. I know that dystonia can cause pain and discomfort. If the lower stomach muscles were contracting against the lower intestines, I believe this could cause you discomfort and the need to purge.

Call Dr B office and figure out how they do it. Somebody said he has only been turned down 2 times. Search the forum. I am so sorry. Insurance can be a big pain in the rump.

Here something similar but older: Mov Disord. 2002 Jul;17(4):817-20. Post-streptococcal autoimmune neuropsychiatric disease presenting as paroxysmal dystonic choreoathetosis. Dale RC, Church AJ, Surtees RA, Thompson EJ, Giovannoni G, Neville BG. Department of Neurology, Great Ormond Street Hospital NHS Trust and Institute of Child Health, London, United Kingdom. R.Dale@ion.ac.uk Abstract Paroxysmal dystonic choreoathetosis (PDC) is an episodic, non-kinesogenic, extrapyramidal movement disorder. It is postulated that PDC is an ion channel disorder. We describe a sporadic case of paroxysmal dystonic choreoathetosis occurring after streptococcal pharyngitis. The episodes were characterized by abrupt-onset dystonic posturing, choreoathetosis, visual hallucinations and behavioral disturbance. Each episode lasted between 10 minutes and 4 hours, and occurred up to 4 times per day. In between attacks, examination was normal. The episodes waxed and waned in frequency during a 6-month illness. Magnetic resonance imaging of the brain was normal. Post-streptococcal neuropsychiatric disease has a proposed autoimmune etiology, which is supported by the presence of serum antibasal ganglia antibodies. Western immunoblotting of this case's serum demonstrated antibody binding to a basal ganglia antigens of molecular weight 80 kDa and 95 kDa. Immunohistochemistry examination demonstrated specific antibody binding to large striatal neurones. We propose that autoantibodies produced in post-streptococcal neuropsychiatric disease cause alteration in neurotransmission, possibly secondary to ion channel binding. Copyright 2002 Movement Disorder Society PMID: 12210883 [PubMed - indexed for MEDLINE]

I cannot wait for Dr K to turn them on their heads. One of the first things I learned when my child got sick was to throw out my college psy books - nothing worked or helped.

http://www.ion.ucl.ac.uk/departments/neuroinflammation/themes/neuroimmunology Quote: "Interestingly, paediatric subjects with ABGA appear to have persistent nasopharyngeal colonisation with streptococci." DS's 1st MRI - age 7 - normal 2nd MRI - age 18 - moderate mucosal disease of left mastoid sinus Watch those sinuses....

There is a website http://www.pandasnetwork.org you should checkout. I think it's Buster's. There is a link to a Swedo lecture. It might help. Ask the doctor to email Swedo to see if they made any changes this week or Dr L.

I have 3 crazy mom binders. Love it.

I'm sorry your feeling so helpless. When my son first become sick, I cried a river. What if.... What if .... It's normal. Everytime a child gets a chronic illness there is a grieving process that the parents go through - anger, guilt etc. You're grieving. It's normal. It's stressful. It's painful. The child that you had is gone and a different child has replaced him. There are a lot of books available to explain this process, they might help ease your pain and give you some peace. Keep helping your child to be the best that he can be and to be happy. Don't take it out on your husband - mine was clueless - two parents are better than one. If your child had not gotten sick, the choices that you had made earlier would have been good choices. Nobody plans on having a sick child. I cannot add to the medical tests available. I've have spent days at hospital for tests and know your frustration. The doctors would roll their eyes at me. I want to carry a business card to give them that says "You have just been diagnosed with a chronic eye rolling tic disorder" with a referral to some nasty web page. I'm kidding? ....right. I do appreciate that there is help out there but I am frustrated by the process of getting it.

My son has a cousin who has pandas. He had RF when he was 4 and later got tics and pandas - mild case. He has 2 younger brothers and they all went to public school. His mom is science teacher. They did not do any treatment for pandas only treated ADHD symptoms. The family never caught strep again. (why and how?) He is 20 and in college. I hope this makes some of you feel a little better. The NIH believes you should do nothing unless you have severe symptoms - didn't work for my son. Why? I wish I knew. Everyone is looking for a crystal ball and all I want is a time travel machine.

Congrads. Welcome to the real world of teenagers. All my son's cousins went through it and we have always told the parents "We wish we had your problems" I am so happy for you. When she complains, remember to keep the stern mommy face on the outside. I don't think I would be able to keep from smiling - emotional liable? you bet.

SOOOOOO Happy for you! and Jealous - it's a beautiful place for a vacation.

My son was put on doxycycline mono 100mg BID for acne. Derm knew about pandas and that I wanted something that also kills strep. It helped but aug 850 BID has really cleared up his skin. He had no adverse reaction. Derm was a UT grad so maybe UT promotes it, or there is some kind of marketing bias (received coupon).

It really drives me crazy that you have to pay more for less!!!!!!!!!!

Tenex is a good first line medicine. Not a stimulant - tried ritalin which made he more hyper. My son lost impulse control - he was not angry - just hyper - impulsive - unable to focus - not a big ticcer. For us, Tenex was a wonder drug. The effect was IMMEDIATE. He could do school again - no spitting (tic), standing on chair, touching teacher's desk, playing with water and other quirky behavior. He regained impulse control. The only trouble was that it didn't last all day - we needed an extra hour in the afternoon and evenings. I think they make a time release or patch now. The doctor switched us from Tenex to Risperdal - a much much stronger drug. Risperdal helps with dopamine and seratonin. Risperdal really helps my ds with mental tics - sticky brain thing. Clonidine - no help - except as an aide for sleep - for my son it has a long effect and we would have to give it at 6pm and it turns his brain to mush by 6:30pm. This drug is used by the tourette kids for sleeping problems. Klonapine - no effect - not for tics or seizures. If you need to consider meds for tics the TSA - tourette society - has lots of information and lists of doctors who are familiar with tic meds. VENT: There is no test! It is all trial and error! This drives me nuts! They really don't know much about the brain! More research is needed! When Michael Fox got parkinson disease I was so hopeful - parkinson being the opposite of tourettes. Now is that sad.

My child had scarlet fever when he was 4 but didn't develop PANDAS symptoms until 7 after a strep infection. Because he was older it was very hard to miss the change in behavior. He had 1.5 years of school to support the change. It could not be blamed on the terrible two's or three's. (the three's were worse for both my boys) So getting PANDAS later has a definite advantage from a diagnosis point of view. The disadvantage was I was blamed for all his problems. I think Sammy has a strong immune system except for the "really nasty strain of strep" and that is why he was older when he got sick and why he recovered and still recovers with antibiotics only. I think Dr N sees a subset of kids because of her high titer requirements. I think Dr K sees a subset of kids because their symptoms are so bad that the parents will drive or fly from anywhere to seek treatment when the regular medical treatments do not work. I think the NIH sees a subset of kids for the same reasons as Dr K. My ds19 has had untreated PANDAS for 12 years - we knew he had PANDAS for 11 of those years. My son has high titers - 900's. We were told to treat symptoms (lots and lots of meds). My son is always sick and has been on lots of antibiotics for his symptoms - the usual 10 days (when he was little the usual was amox for 7 days) My son could be the poster child for how cheap a strep test and long term antibiotics are compared to conventional medical treatments. The problem is my child doesn't run a fever when he first gets strep, he pukes - it took me awhile to figure that out. The only benefit having been labeled as PANDAS is now his ped will do a strep test when he is sick - no antibiotics unless positive or has URI - then the usual 10 days. It has been trouble to watch my child get sick, start having problems at school and I cannot get any long term antibiotics even with high titers. He would recover or his meds masked the symptoms again for a while. My child was not saved and had a terrible school experience which he cannot forget because of PANDAS's OCD. For me Saving Sammy offers hope. If Beth can just get the medical community to change a little today, children like my son would not have to live without hope. I know this is just the tip of the iceberg and I feel for everybody else. I hope Beth gets rich from this and anybody else who brings about change. I am more than willing to help them get there - I've bought 3 copies of her book and recommend it to all my friends and family. If Sammy and his subset of PANDAS (whatever they need to call it) can get this ball rolling for any kind of change that will be good. Then the rest of you will have an easier time making the other changes that need to made. I don't need to preach to the choir. The more people in the fight the better.

Certainly a person could have low levels of OCD and/or anxiety and still function very well in society. I think that to succeed in today's society you have to have low levels of OCD - but your OCD needs to be socially appropriate - neatness, organization, time etc. I don't think you can be a high achiever without it. Look how many gifted kids don't finish school or don't do well because they cannot focus or obsess on one thing.

Don't flip them. Cook them with the lid on the pan or under broiler in oven. Check out: My dad(70ish) loves youtube he says you can find and learn everything. If there is a will there is a way....

Thank you for all your posts. I really enjoy reading everyones takes on the OCF Conference. Between AutismOne conf and OCF conference some families will find some hope and treatment. You rock!

My son has trouble regulating the tone, volume and pitch of his voice. Is this common for PANDAS? Thank you for your input.

Lack of sleep is a BIG problem for my child. We treated the symptoms medically for years - stimulates to wake him up and clondine to put him to sleep. Clondine is what tourette doctors use. It works but I would have to give it to him so early around 6pm in order for it wear off by morning. That means the child had no life outside of school. His brain was mush from 6:30pm until 8pm - no after school activities such as sports and major problems with homework - he could do the work but would not remember it - total waste of time. And if he fell asleep in class - more homework. For the eye rolling crowd - he could not sit still long enough to do homework after school. He needed to unwind. He is also a 12 hour sleeper and has to be asleep by 8pm in order to get up the next day and function. Lack of sleep => Bad day. His school would only let him miss 1st period. They do attendance 2nd period and you cannot miss it because the school gets paid for each child present at 2nd period. UGHH!!! Another issue that needs to be fixed. When he fell asleep in class (grades 2-8) it wasn't really an issue - they just wanted him there 2nd period so that they would get paid. Now high school is a whole different story. You can only miss 3 days per period or you don't get credit plus you have to be there 2nd period. Lots and lots of luck - I feel your pain.

Promise not to laugh but it could be the smell - nice smell. When the child is sleeping in your bed they can smell you and this provides comfort. Again no laughing, give them your pillow or sleep with their blanket so it smells like you. That way they can take the blanket/pillow with them. One of my friends had a son who had major problems falling asleep without his blanket. Before he went to sleep he would smell it and this relaxed him. Washing it was a major problem. He was this way into his teens and was able to explain it. The blanket grew smaller and smaller as he aged with some help from mom. Kids and parents cannot function without sleep !!!! Do what you have to do. Another friend moved all 3 of her kids into the same bedroom so that the oldest would not wake her up every night. A doctor she worked for suggested this so that she could do her job. Lots of luck.

Love it. When my son first got sick it would take him all day to put his clothes away. He would pull everything out and refold everything. I know when he is feeling better because the drawers are open and clothes are hanging out. :lol:

Thank you for posting. I couldn't find anything on 20/20 but the NIH lists gluten as a possible cause for seizures and pubmed.gov has several articles listed. Some of them recommend testing children with epilepsy for gluten sensitivity to rule out celiac disease. They also mention a folic acid deficiency that can cause calcification in the brain which leads to seizures. One article says that celiac disease shows up first neurologically. I had always thought that celiac disease lead to osteoporosis and could cripple people not neurological disorders like seizures.

Curious - how long has your child been taking GABA Plus. I can't help you sorry.