mkur

Thanks for posting

Start checking into your school district's policy on shots. I delayed giving my younger son his follow up MMR because: 1)he had delays in speech 2)doctor (ped) said he wasn't very social - little eye contact 3)he had an older brother who had pandas - autoimmune problem - (12 years ago there was no treatment plan except to treat symptoms TS/ADHD/OCD - trifecta) Ped believed in pandas - had a brother who died from RF - took strep very seriously but couldn't treat pandas. The doctor (ped) wrote a letter to the school recommending delaying MMR until my younger son gained more progress in speech- the doctor knew how to handle this - it was he suggestion. Every year I would need a new letter. This ped retired and the new ped would not give me a letter but my son had made a lot of improvements. I read somewhere that you really don't need a letter that it is your right but every school district has different policies - this was 8 years ago. The most important lesson I learned: Trust yourself - you know this kid better than anyone. Please rule out PANDAS first. Good luck.

After IVIG, do you try to isolate your child so that their immune systems calms down? or do you expose them to everything while they are protected with extra immune cells? (like baby during breast feeding) What do the pandas doctors think?

I use to have DS sit on my lap in the chair and put his head back to look at the ceiling (no peeking) while I talked and talked. Sometimes it would turn into a struggle but it had to get done. I always took him to DQ for banana split afterwards. He still wants DQ.

I think that the signs of pandas show up easier on a normal intelligent child - kind of hard to miss. If the child already has problems - autism, anxiety etc then it gets harder to see the pandas because of all the other symptoms (noise). If you have a science background and believe in science (chem, bio etc) and I mean cause and effect, then you will not believe the doctors when they say "children just change sometimes" or "the child is smart (meaning smarter than you)" or any other remark. You think cause and effect. Someone did not zap my child. A college degree shows that you can complete something on your own and stick with it. If your child is sick you will keep trying to find an answer and with pandas it is a fight. If you have a college degree hopefully you have a decent insurance plan and can afford to pay for it. You are also financially and mentally able to seek treatment especially those that are out-of-pocket and can afford to travel there to get an answer. I think that pandas is a lot more common than we think. The severe cases cannot be ignored but what about the mild cases or the cases where the child has only one strep episode (no symptoms) and isn't exposed again. Here is another thought: People don't die from RF or SF anymore, those people are still alive and having more children. People are more mobile so their immune systems are being tested like never before. My child has always been sickly. I know that if we lived in third world country he would have died from dehydration. He would get so sick and his body would purge and purge from both ends.

My son received services under "OHI" Other Health Impaired for ADHD. It was explained to me this way. All you need is one label for the child to be put into special education so go for the least stigmatizing which I think is ADHD (approx 10% of pop is ADHD or ADD). A lot of children receive services because of speech. A couple of years ago the law changed and tourette's syndrome is now under OHI. Stay away from ED because it is difficult to remove. I was also told nothing goes on the child's permanent record until high school except for ED. Once the child has a SP.ED. label they qualify for services and are under the umbrella. Now the school district may limit which services are available by the label. But extended time and small classroom testing are available for ADHD. A lot depends on your child's advisor - some are better advocates for your child then others. There are a lot of non-profits available to help you. Our school district has a list available for parents. The tourette's syndrome association TSA was very helpful for me - they have a lot of info posted on their website. TS kids have all kinds of issues so TSA knows a lot. Do your homework - list the problems and think of a solution. My child was spitting and I did not know what to do. You can request a tissue box and treat it like a runny nose. My kid was getting up and leaving the room to go the bathroom - major problem. When you are having an ARD to develop an IEP plan - stay calm. Bring a friend or relative for support. If the meeting is going the wrong way and you don't have enough information or support, end the meeting and sign DISAGREE on the sign in/out sheet. Go home and regroup. I am just a parent who had to learn everything the hard way and this is how it was explained to me. Good luck.

Parents refer to wide eyes and I was wondering what do they mean? Are the child's eyes always opened wide? or do they have episodes of wide eyes like during panic attack? or do they have staring spells? etc. Thanks for helping me to understand.

Who are Dr. T and Dr. B? At the top of the forum there is a thread on abbreviations. Check it out it makes things a whole lot easier. Lots of luck with your insurance - keep at it.

You definitely want to plan this ahead. My dh and pandas son had a layover in Atlanta when my son got a headache and started laying across the seats. My son cannot ignore any symptom he has and will lay down or sit down anywhere. Some airport staff member singled him out and tried to keep him off the plane. The H1N1 flu has probably caused some changes in airport procedures. My husband had to argue with them and they let him fly. He said it was very emotional. Definitely plan this ahead and carry documentation.

Which Igenex lyme disease test did you do? The person on the phone said you have to be off abx for at least one week. Did you do this? Thanks.

Yes - initial symptom cut DS's hair buzzzzz

They happen in stage 3 sleep. DS had zero stage 4 sleep and only 6.2% REM sleep. I thought maybe he had narcolepsy and then they could still be night terrors. But the doctors say no. Back to square 1. Last neuro is sleep specialist with interest in night seizures at level 4 epilepsy center. Here is the plan: be thankful keppra works and start to treat pandas and hope all this will go away. Thank you for taking the time to comment. Waiting for lab work and then go back to see Dr B.

I tell him to drop during the aura part. Then we try to keep him still during the seizure part. He's eyes open w-i-d-e during the seizure part and you cannot interrupt it.

Additional info: The aura scares him and he runs for safe place. Then he does this repetitive movement thing for about 1 min and makes a noise. I have him drop to the ground so that he doesn't run into anything. 2 MRIs - normal 1 sleep study - showed up as parasomnia awakening possible night terrors 5 ekg - showed up once as a partial bundle block - repeated at children's hospital - everything fine 3 eegs - 1- one at ER - no event 2- children's hospital - no event 3- 3-day ambulatory at home - original neuro said yes put on Keppra - fixes it - doctor moves New neuro says he does not see it on original 3 day eeg and put son in hospital for 1 week to retest and get off keppra - level is too high. Only one event in hospital - doctor says yes. Off meds - YES. DS gets sick one month later and now has them 1/hour 24/7. DS has one in doctor's office one month later and neuro says no and gives me referral. Nothing else to tell. Have you seen this?

My ds has these events. They only last a minute but they have an aura. He calls them headaches. I call them seizures per visual observations. First neuro called them delirium. One doctor calls them tics. Another neuro calls them a movement disorder. Another neuro called them partial complex seizures. Last neuro called them seizures and then changed his mind and gave me a referral to another doctor. Sleep study calls them night terrors? But he has them during the day. We chose to medicate to make it stop. Depakote fixed it for years and then stopped working. Keppra works now but makes him difficult and takes so long to kick in. I have to use a neuro to get keppra prescription. They are getting worse every 15 min 24/7 every time they break through. Have you seen this?

es = extra strength http://ear.emedtv.com/augmentin-es/augmentin-es.html

http://consults.blogs.nytimes.com/2010/07/...-and-tourettes/

PLEASE rule out PANDAS first by a PANDAS doctor. There are some PANDAS doctors that take insurance and the waiting list are not any longer than the local children's hospitals.

I would like to see the year the child's symptoms began and the year the parents learned of pandas. There was no treatment available for the older children. Thanks for all your input, Mar

My son is a PANDAS and Tenex was the first non-stimulant drug we tried. It was a wonder drug. The effect was instant. It helped with his impulsive behavior and tics. He could do school again. The only problem was it didn't last 2pm. This was 1997 and I think there is a patch now. Staterra has to build up in your blood level - this takes time.

Cooking in a cast iron skillet adds iron to your diet.