thereishope

re: Omega 3's and adverse effects. This has been mentioned on here before by Chemar. Her son, diagnosed with TS and may have had PITAND, cannot take Omega 3's in a supplement form. However, if it is put into his everyday diet, he tolerates it fine. He cannot take fish oil, but he can eat fish. I believe she said in suppplement form it increases tics. I'm sure you've done this already, but the foods she does eat, have you researched them to see if they cause inflammation. Take for example, corn, something that you can barely get away from in today's diet. That causes inflammation. I find it interesting that most kids LOVE corn. My PANDAS son refuses to touch the stuff. Because of the inflammation that corn can cause, one really needs to watch high fructose corn syrup too and eliminate that from their diet. One Mom that comes on her occasion has a blog for her new way of eating for her family. Her daughter was VERY sick from PANDAS. I suggest popping on facebook and checking it out. http://www.facebook.com/?ref=logo#!/pages/Chickie-Peas-blog-Eating-for-Autoimmune-Health/259835828602?ref=ts re: Vitamin D...I believe those levels should be checked at the doctor. This will also help with dosing. I have read the D3 is also the supplement that one should take. Anyone have info on that?

Starting as early as September, flu shots/mist will be available so I thought I'd post this now. Last year, there were MANY discussions whether a PANDAS/PITAND child and/or family members should get vaccinated. But last year was different. There was the a separate seasonal flu vaccine and a separate H1N1 vaccine. This year they will be combined. So, I just want to give a heads up to those wo were strongly against the H1N1, but decided to get the separate seasonal vaccine. They are combined into one vaccine this year. I just want to make sure everyone knows what is being offered. Personally, my family will not get any flu vaccine this year (the did not get any last year either). I read in the paper that they have also increased vaccines required for school in my state. This is just getting out of control, in my opinion.

dut, I agree with Peg. She needs that comfort right now, even if is heightened due to separation anxiety. Would she go on an air mattress next to your bed or would the 2 year old be willing to do it. If you can, blow up a twin air mattress and once the kids are asleep, you can sneek out of bed and sleep on it!

I'm so happy for you and your daughter! Please keep us updated!

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The psychologist tried those faces with my son when she attempted CBT and I knew he'd have nothing to do with them. He was very difficult When you attempt something with her, do it in baby steps like you said. I warned my son ahead of time (like an entire day) when we going to to do something different so he didn't feel blindsided. Then we would stay with that one single change for days until the anxiety was at a minimum. Then, again, I'd warn him about the next change and so on... You usually have to look at these things in layers. Watching the elevator alone is a step in itself.

You can get a false negative culture while on antibiotics. If it were me, I'd call specialists and try to get in quicker and I would call around to ped's offices, speak to the nurses, be open and honest and ask them to talk to the doctor on staff and if it's worth bringing your son there. You can go to a different ped whenever you want. You do not need to have all files transfered at first. You can also go to urgent care and see if they will give your son a different med. Don't wait until November. Have you called Murphy's office and told them what's going on. Maybe they can bump you up.Call them. Also, scan everything else...has anyone else around him been sick, does he have allergies that are kicking up? If you haven't tried Ibuprofen, give him some. See if that takes the edge off for now and gives him some relief.

Oh, Peg, it's like a nasty cycle. To overcome any fear that is associated with OCD, anxiety is involved. Then that anxiety causes the PANDAS symptoms to ramp up and OCD is among them. First, I am so proud of your daughter for WANTING to tackle the elevator fear! That is huge that she wants to do even though the anxiety is there. Wow! How far has she gotten so far with the elevator...being able to watch others? Can she watch you, her mom, go up and down in an elevator? Does that in itself still cause anxiety?

Emerson, to my knowledge there isn't proof that PANDAS causes permanent brain damage. As for chronic PANDAS, I think that term carries different meanings. First one.. One defintion of being chronic, if you referring it to #4 on the list in this thread is when, like you said, the brain has been retrained during a PANDAS exacerbation(s) and the OCD that used to come and go is now part of them. The brain incorrectly learns and thinks those types of thoughts are the correct ones, when they are not. Now, the hard part is trying to figure out what is still PANDAS and what is residual as a result of a past PANDAS exacerbation. I don't have an answer on how one would know that. This is why parents need to try everything they can for their child. If the PANDAS reaction is still in effect, I just don't see how one can fully retrain the brain to think correctly again during that time. Perhaps you can learn coping mechanism, but I would think it's hard to retrain the brain when it is still being assaulted. The PANDAS reaction needs to be under control and passed. Infections need to be gone, antibodies need to be lowered, etc. Then there is this is a definition of chronic PANDAS Dr T once gave "Chronic PANDAS" In your case, if you have gone 13 years without any treatment and you currently do not even know if you may have an active, hidden infection...you are still in the catagory of fighting PANDAS itself. Don't feel that all is lost. Has your Mom or step Dad made you an appt yet?

I was reading somewhere that religious and conscientious/philosophical technically should be interchangable since many believe God is your conscious. Also, as someone stated, it could be that philosophical is still available but they want parents to ask for the paper. It's really scary that the Federal Government might take away our choice as to whether to vaccinate or not. Maybe they just took it off the paper to discourage parents from using the exemption. Hopefully they didn't change the law! If they did, can you get a doctor's letter? I think we're going to go ahead and claim religious exemption (that used to not be on there- it was swapped with philosophical). I'm pretty sure we could get a dr signature, w/ her getting IVIG monthly- but we don't want to be stuck if IVIGs gets discontinued. At this point, her immunologist is willing to continue as long as she is improving and insurance will cover, so not definite. I tried searching- I couldn't find anything on AZ vaccine policies newer than last year. I think the federal government will mandate vaccines in order to participate in government funded or subsidized healthcare, on the basis that it will cost taxpayers $$ to treat diseases, instead of preventing them.

re: stress. I think kids can tolerate small to moderate amounts of stress but when it starts to get over the top ....when the child's starts practically hyperventilating, buldging eyes, etc...that's when you need to step away and see if there's anything you can do to clam them down. Yes, this is hard to do when trying to overcome OCD since that anxiety will be present when fighting it, however, in the long run that anxiety will hopefully be overcome and the daily anxiety associated with OCD won't have to constantly be faced. I guess what I am saying is short term high anxiety is better than long term bursts of moderate to high anxiety. That is also why when you are deciding to tackle OCD, choose a time when it is the calmest for your family. Don't decide to tackle a tendency when you are about to go away for a trip or when school is about to start. I made sure I spaced things out and there were times I'd go a couple weeks before approaching another ritual or compulsion just because it wasn't the right time, I knew I was strong enough yet, etc. Perhaps give your child Ibuprofen while you are starting to tackle the OCD and this will help as well.

Luckily, I think it is our kids young ages that also makes it a little easier to retrain their brains back to "normal" thinking. Continue to give him Omega 3's too. That helps with the brain. I don't think I will ever stop giving my son them. When we were helping him overcome the residual OCD, we choose what we would would work on and still gave in to other OCD rituals until it was that ritual's turn to be tackled. Just make sure if it's a tendency you are trying to tackle, that one you don't give in. That will empower that nasty OCD. Vickie, We were told this about our son from our pediatrician, neurologist and behavior therapists...that OCD basically becomes a learned behavior and can be difficult to break even after all other symptoms go away. It's the main reason we aren't 100% back (between flare ups when he's exposed that is...but those usually only last 3-4 days). My understanding of it is, the younger the child, the more likely the OCD is to remain since the brain is making new connections at such a rapid rate. Since our guy is only 2, it's really one of our biggest concerns. We're doing behavior therapy and focusing hard on the OCD, but I have to admit, we're still so shell shocked from our initial exacerbation that we tend to give in ton his rituals a lot to make life flow better. I've realized working with the therapists, that in our case, since he's so young, it'll almost be like training a dog - you're really training the master more than the animal

Mom, my son was treated with antibiotics quickly with each exacerbation and he STILL had residual OCD. I think that since he was 5 and since he was treated quickly is why he was able to overcome the residual OCD in a matter of months when we finally tackled it. It was my gut that told me that he was past his PANDAS exacerbation. With your son, he has had it longer, it probably will be harder to overcome it. But make sure you feel you have done everything medically you can for your son.It isn't until the PANDAS is completely tackled can he fully overcome the OCD. The PANDAS reaction is forcing him to have the OCD and not letting him be open to fully overcoming it. I have a feeling one day you will reach that "no OCD day". It's a puzzle. it takes a while, but you'll figure it out.

My son experienced #4 on the list. The PANDAS OCD morphed into "regular" OCD. He just had so many exacerbations back to back that the OCD became part of him. I knew something was going on when he stopped following the shedding pattern I saw in exacerbation #1 and #2. With those, the OCD went away without intervention besides antibiotics. With #3, all other PANDAS symptoms went away but the OCD. It wasn't until we stopped waiting for it to go away on its own and started strongly tackling the OCD head on did he overcome it that time. I am so happy to say he has been OCD free now for almost a year! But I can totally see how an adult with OCD may have had it all started with a PANDAS exacerbation in childhood.

There is actually a book about that vaccine DPT: A Shot in the Dark by Barbara Loe Fisher , founder of the NVIC I just got back from my non-PANDAS 4 yr old check up. They wanted to give her the MMR/chicken pox combo vaccine! Uh....NO!!!!!

re: ketchup. Other kids on here have a sensitivity to salicylates. Here's a thread about it http://www.latitudes.org/forums/index.php?showtopic=7604&st=0&p=61851&hl=ketchup&fromsearch=1entry61851 this is correct. non PANDAS brother has severe allergies. our pedi said that if anyone in the house had strep then the child with PANDAS could have a reaction. well this after noon my husband come in the door saying his throat is hurting along with mine hurting as well. we did have his allergies tested and he didn't show to be allergic to anything at all. i told them that if he eats alot of ketchup his ears have turned red before. he didn't show any reaction. also we had a pool put in last summer and he didn't do this bad then. we have been in the pool since may and just last month tics have gotten bad. he still hasn't ever been diagnosed with PANDAS so i guess i shouldn't say he has it but he tends to follow that pattern more then TS. he has never been diagnosed with TS either. just a mild tic disorder when he was 6 and we were told more then likely he would outgrow this. well now he is 9 and it has gotten worse.

I'm glad there's improvement! Thank you for the update.

To clarify, the non-PANDAS son has the severe allergies? In a PANDAS child, allergies can worsen symptoms. Exposure to strep (even without infection) can worsen symptoms. I have not heard exposure to someone suffering from allergies worsening symptoms. I think you do need more tests beside the throat culture. Being that he is suseptible to strep, it could be in so many places. Have you seen the PANDAS flowchart? That might help http://www.latitudes.org/forums/index.php?showtopic=6688&hl= There are also things that can cause tics to worsen. Being that it is summer, people should remember that even chlorine can make tics worse, certain food dyes, certain supplements, etc. Have your ruled strep out in everyone else in the house?

Maybe that little boy is a strep carrier. Makes you wonder. Or that boy knows what upsets your son and purposely does those things to upset him.

I can help you with the Cunningham contact info... Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2217 email: madeleine-cunningham@ouhsc.edu She mails you a kit.The cost of running the test, I believe, is $400. Insurance does not cover it but it is consider a charitable donation since it is research so you can claim it on taxes.

Thank you for posting this. What website is this from? Dr. Kenneth Singleton addresses this question in his book The Lyme Disease Solution. He recommends Avon's Bugguard Plus with Picaridin, not deet. Deet is toxic and it is unclear whether it really works for ticks according to what I have read. Any natural tick repellent (like from whole foods) is probably fine too. These are suggestions for things you can do to protect your family: 1. Wear a tick repellent whenever you are outside on grass, in the woods or on the soccer field. Avon’s Bug Guard Plus Picaridin repellent is recommended by lyme experts. Deet is toxic and is not recommended for application to skin. Some believe that products containing deet actually attract ticks. 2. Wear a hat when outside in an area near ticks to limit a tick’s access to your head. 3. Tie back long hair so it is harder for a tick to get swept into your hair. 4. Consider treating clothes, hats and shoes with Permethrin, a chemical that kills ticks, especially when going hiking or camping in a high-risk area. Permethrin is toxic and must be handled very carefully but it can provide an extra level of protection. 5. Wear long light-colored pants tucked into socks while in the woods or in areas with a lot of ticks. 6. Wash you hair with a peppermint or tea tree oil shampoo that repels ticks. Experienced campers recommend using Desert Essence Therapeutic Treatment Shampoo for treatment of head lice (available at Whole Foods) prior to camping to prevent tick attachment on the scalp. 7. Perform complete tick checks during tick season (which is most of the year in Maryland-March to November). Experts recommend that you check every few hours but at the very least check your kids before they go to bed! Keep a tick kit in your car in case you need it on the go. Ticks like to attach to parts of the body that you might not be able to see well such as under arms, behind knees, on the head, behind the ear or in the groin area. 8. Don’t expect to feel a tick bite. Ticks inject you with a numbing substance so you do not usually feel the bite. 9. Carefully remove ticks with a tweezer or other tick remover (such as this device that veterinarians recommend: http://www.rei.com/product/407279) and clean area with an antiseptic. Wear gloves and do not use Vaseline or a match. The State of Maryland provides instructions here: http://www.cha.state.md.us/edcp/vet_med/ld_prevent.cfm#remove. 10. Save any tick you remove in an airtight container. You can have it tested for Lyme Disease and/or other tick-borne illnesses later if you or your child get sick. This really helps with any future treatment should you get sick. Note the date and location of the bite. Many states offer tick-testing for Lyme Disease and Igenex Labs in California (http://igenex.com/Website/) will test ticks for Lyme Disease as well as other tick-borne diseases for a fee. Given how unreliable the patient testing is, knowing what diseases the attached tick carried can help the doctor decide which treatment is best. 11. Don’t track ticks in the house. Ticks can get into your house on shoes, pets or clothing worn outside. Keep your shoes by the door so they don’t track ticks into your house. Put clothing (or sleeping bags from camping) that might have ticks on it in the dryer for 30 minutes to kill any ticks. It is risky to sleep with any animal that spends time outside, even if the pet is treated with tick medicine. Ticks can hitch a ride in on the pet and fall off inside. 12. Tick-proof your yard. Get rid of brush and fallen leaves, move wood piles away from play areas, keep the grass cut and treat your yard with pesticides (natural or synthetic) to kill the ticks. The CDC has these and other recommendations you can follow: http://www.lymediseaseassociation.org/. Naturalawn of America offers a natural tick treatment that kills ticks that they recommend applying from March through October. There are also a number of natural tick repellents you can apply yourself that you can buy on-line or at your local garden center. A combination of these approaches along with the tick repellent can significantly reduce the risk of ticks. Daminex sells Tick Tubes, cardboard tubes filled with cotton balls soaked in Permethrin that kill ticks on mice without harming the mice. You can also make your own tick tubes using PVC, old carpet or other material and Permethrin. http://www.ticktubes.com/

I have not tested my son for Lyme. I do not believe there is a reason to test him since he, for the most part, is textbook PANDAS. So, even though I cannot answer your question about actually testing negative for Lyme, I would catagorize my son as being PANDAS only.

I agree with the others. Talk to your ped now about changing antibiotics while you wait for an appt with a specialist. Remind your doctor that a child can contract strep even if they are on a prophylactic antibiotic and you want a strep test, but there is a chance of a false negative because of the pen. It sounds like strep may be back. Also, rule out strep with everyone else in the house.

Probiotic threads to read w/ various brands mentioned.... http://www.latitudes.org/forums/index.php?showtopic=6692&st=0&p=53138&hl=pearl&fromsearch=1entry53138 http://www.latitudes.org/forums/index.php?showtopic=7368&st=0&p=60201&hl=pearl&fromsearch=1entry60201

On ques #23, I did answer that we treated infection with antibiotics since we did confirm infection, but my son also falls into the catagory of no sore throat. It was sheer luck we swabbed him that first exacerbation.