mkur

Dr B is treating my son and we are very happy with him. I am sending you a pm.

My son had spitting and urinary problems at first. My son got sick in Nov 1997 and we didn't learn about pandas until Sept 1998. Back then there was no abx only psy meds. I think my son's spitting was a tic. My son was prescribed Imipramine for urinary problems and tenex for impulse control/tics. They worked but then maybe the pandas just went into remission. Treat the spitting as a tic. The schools cannot fight you on this. It is not a behavior problem but a neurological problem. Tourette's Syndrome Society can help you with this. My son ended up in a behavior class at a different school - this can happen fast - move quickly. Treat the spitting like a runny nose. Have him spit into a tissue and make sure tissues and trash can are available. Schools and other people have very negative reactions to spitting and urinary problems so I can feel your pain. I'm so sorry.

I H..A..T..E.. "IT" I echo everything posted in this thread. It's kind of freaky how many of these posts relate to us which means we are in the right place. I want to thank everyone on this board for giving us hope again. What a mess.....

Our next PANDAS Support Group Meeting will be held: Thursday, October 28th, 2010 6:00 PM - 7:30 PM

Bumping up an approved announcement. Sept meeting is 9/30 - Thursday - same place - same time.

http://news.yahoo.com/s/hsn/20100920/hl_hsn/increaseinseizuresseeninkidswithh1n1flu

This is my opinion. 1- The doctors quit taking out children's tonsils and would just prescribe an abx instead. 2- The morality rate of children is down because of abx - but why does the medical community abandon them when they become older - they still have immune issues. 3- People use to die from RF and scarlet fever but now these people live and have children who need help. 4- The bacteria and viruses are always evolving (mutating independent of antibiotics) and they do it at a faster rate than people.

Here's another list of doctors listed on the forum http://www.latitudes.org/forums/index.php?showtopic=5023&st=61 Johnson City, Tennessee First Choice Pediatrics Group Dr. Meg Farmer (pediatrician) Dr. Thomas Gill (pediatrician) Dr. Heather Beadry (Psychologist) Dr. J.P. Abner (psychologist)

This was posted on a different thread: http://www.latitudes...indpost&p=82590

I was just talking to a friend who's on ondansetron for severe morning sickness...it works really well! Finally someone is getting treatment for severe morning sickness. All I was offered was an in office IV.

At the pandas support meeting, one of the moms said her son had severe diaper rashes when he was baby and that it was probably excema. So most of my son's diaper rash (very sensitive skin) and jock itch were probably excema. Dr B asked me if my son ever had excema and I replied "NO". Ugh!!!!!!!

For Airial95: The tourette syndrome assoc did some research on pandas but they could not prove pandas and a lot of the ts doctors don't believe or won't treat pandas. So ask your ped where do tourette and ocd fit in. The older children were given ts, adhd, ocd or ed labels. Aspergers is a relatively new label. Your ped sounds wonderful and we need to clone him.

http://www.snoringcenter.com/ One of the news show did a segment on this procedure called Laser Tonsil Ablation done in this clinic. It is an alternative to t&a surgery. This was a couple of years ago and I was considering it for my son because the recovery time is short. This clinic did not take insurance but I'm sure there are other doctors who do this procedure by now and maybe able to get insurance to pay for it. This is my 2 cents: If your child has an immune problem then t&a will not prevent strep throat but it can help prevent colonization. I think abx before and after t&a is necessary just like with dental work.

Pepsi updated panda page today http://www.refresheverything.com/ideadetails/article/postId/619/postType/post/ideaId/e4967728-67c3-102d-9528-0019b9b9e205

My son is labeled TS/OCD/ADHD but he is not a big ticcer. Initial symptoms: TS: spitting and twirling OCD: sharp pencil, sticky brain, what's right/wrong, mom mom mom mom, not flexible ADHD: can't sit still, talking&talking and no listening, lack of impulse control, unable to focus Freq urination [Headaches/seizures/panic_attacks/movement_disorder] Improvement is difficult for us to measure because of the [Headaches/seizures/panic_attacks/movement_disorder] issue. This is what we are trying to fix. The freq and intensity has increased and he cannot do school, drive or hold a job when he has them. They really set him back - mentally and physically. My ds started abx in feb because of severe acne. I explained pandas to derm and he put ds on a diff abx each month until we could see Dr_B in june. Physical health improved immediately. His seizures have not been breaking thr as frequently either. Ibuprofen has made a big difference. Boy do I wish I go turn back the clock. Such an easy fix. Good luck

I hate to inform you this but we're in the same boat as you. DS got sick when he was 7 - Nov 1997 and has never been treated for pandas. Saw Dr B beginning of June. He is the healthiest physically he has been in a long time. Mentally he is coming back but is NO way near 100%. He can play videogames again and is sleeping thr the night. We did the neuro and psy thing and now we are trying the immunology method. We're going to do IVIG waiting for Igenex lab results and insurance pre-approval. How long has Dr Rea been treating pandas? I took ds there in 1998 and they were no help and expensive. My son and another girl from OK were too hyper so they quit testing for allergies because we were upsetting the older patients. This saved me a lot of money but I needed and wanted help. Edit:I'm looking at the names and they are not the same. We went to the Environmental Health Center.

TS can be covered by 504 or SpEd. If you're child needs more support in middle school, you may need the SpEd label. TS is now listed as OHI.

Sooooo HAPPY for you!!!! It's so nice to see your child without all the symptoms.

I understood. I made sure that my younger son's t&a were removed because of panda older brother. Their ped helped. Younger brother had speech problems & ear infections and this was given as reason for t&a. My panda ds's ptt was too high so the operation was canceled, and later when panda ds was having major problems I could not find a ENT (and I begged) to do the operation because the NIH does not recommend removing tonsils.

My ds19 weighs approx 150 and takes Augmentin 875 twice a day per Dr B. This is the same dose the ER doctor gave him for infection - so you should have no trouble getting this dose. Bring your "crazy mom folders" and "Saving Sammy" book to the doctors. Show him the 1000mg twice a day recommended amount and the ER doctor will be happy to give you the 875mg dose x 10 days - the normal dose. Reg augmentin has 125mg of CLV which is more than the Augmentin ER provides, CLV is mentioned in other posts which can have extra benefits. Good luck

I have 2 boys so I can relate - lots of excitement. Sorry to hear you need a vacation from your vacation. I tried & tried to get my panda ds's t&a out but it didn't happen. I would like to reiterate something that was posted earlier - put the child on abx a couple of days before the surgery. I know someone who developed tourette's syndrome after t&a surgery. This boy developed severe tics and OCD. His mother thinks he might be a panda. Knowing this, I would still try to get my ds's t&a out. Good luck

Thanks for posting. Very interesting.

This doctor mentions urticaria and IVIG on his website: http://www.allergy-clinic.co.uk/skin-allergy/urticaria/ Good luck

The main problem is the doctors did not diagnosis the problem and therefore still think they have never seen a pandas case. I know I have never gone back to all my son's doctors to enlighten them. When your car's electrical system messes up, you take it to the shop and they fix it. You get a warranty and if the problem isn't fixed you bring it back again and again and again until the problem is fixed. The shop knows if they made a mistake and learn from this process. Doctors have no review system. I'm out every dollar I spent and so is my insurance.

Nevergiveup: Totally agree...excellent points. I would like to point out one more thing. These points only apply if the doctors believe you and your child's symptoms show up in the office visit.