ShannonOtown

I had a skin test a while back and the same thing happened to me. My doctor said I didn't react to the test and if I wanted to find results, I would have to do a blood test. He just said that some patients don't react to skin scratches... didn't say why not.

Good point Vickie... I'll make user logins for every member of the family! My dog is 16 years old... I think she counts too, since she's taking antiboitics for strep!!!

Lisa, My son is in the same boat... doing great since Sept 09 except his eye tics. This past week everything started slipping again! I hate that sick panic in my gut! Thank goodness his local non- pandas doctor gave us 2 weeks of Augmentin. He seems to be doing slight bit better. This just proves our children are just in remission and we probably will be dealing with blips on the radar for a while... Can't wait for a cure! Shannon

Mike... We all remember 'the day' we found the forum... for me it was at 2 am in the morning after an endless 3 year search for answer and numerous doctor visits. I'll never forget the relief in finding a name 'PANDAS' to match all my son's crazy symptoms. And waking my husband up crying I FOUND IT. The good news is you have a new family that understands all your feelings and will answer and support all your questions and decisions. The bad news is you now have a new habit of logging in at all hours reading, researching and trying to keep up on the latest information (and of courses having this disorder in your family) There are some awesome experts and many experienced parents that can help you here.... Shannon

I keep seeing a moving trend with exacerbations of symptoms this spring. I'm in florida and it seems with the Spring allergies starting south and moving slowly north, the seasonal allergies are waking up our kids immune systems. We started about 8 weeks ago, but it seems our northern neighbors are just starting with problems. Wornoutmom, are you located up north where the trees are just blooming? Is your son affected by seasonal pollen?

My spell check went nuts... I meant deficiencies, not defiances

I just took my non-pandas daughter (6 years) to Dr. Murphy for an evaluation yesterday. She having some mild panda symptoms and has always had sensory issues, especially with tags, tight clothes and her hearing. She suggested OT if the sensory issues become a real problem, but is also mentioned iron and zinc defiances could be a part of the problem. She's doing a lot of blood work that includes checking her iron and zinc. I'm not sure if anyone has heard of these defiances with sensory issues?

My son's tics came with all his other PANDAS symptoms. His symptoms are back down to baseline, but his eye tics are still lingering. I spend some time on the TS/Tics side of the forum and read that fish oil is used for inflammation, so I figured it can't hurt. I'll try anything at this point to help his tics.... I figure giving him a well -rounded variety of supplements will at the least keep him healthy and help booster his immune system.

Just a quick lesson learned... I was giving my son Omega Fish supplements... tics got worse. Found out after a food panel sentitivity test that he's sensitive to tuna, which is found in lot's of omega supplements. We take the Barleans Swirl Omega 3 Flax Oil supplement (Stawberry/Banana). 1 tablespoon a day... The entire family loves it. http://www.barleans.com/omega_swirl.asp

Yes, on abx. I deal with it the same as with other exacerbations. I only just put the pieces together last October when she had surgery for an abcess and then cut 4 molars at the same time. Erupting teeth have the same effect, so I know its not dental products causing problems at that point. I agree about the molars. This past year, my son (just turned 12) was slowly cutting his molars... took forever, which I think made his eye tics much worse. He just had a baby tooth pulled last week and we put him on 7 days Augmentin... had no problems or flare ups following procedures. Very anxious before the appt.

That was my same question awhile back on the topic. Here's my link to the discussion. http://www.latitudes.org/forums/index.php?...ic=7278&hl= My son's eye tic is definitely related to this horrible allergy season. He is currently on nose spray and doing allergy shots. I am also watching for other triggers, like gaming and computer time. By evening/bedtime, he shuts his eyes or rubs them because his eyes are bothering him. They seem to be slowing down the last 2 weeks, so I'm hoping the shots are starting to work....

My son has a blinking tic. I too had noticed he was jerking his leg a lot in his sleep and brought this subject up to his Neurologist. She said it could be just the normal relaxation your body goes through... you know, when you jump in your sleep and wakes you or just dreaming movements. But she said you want to be careful, b/c children can have seizures in their sleep. She adviced me to record him sleeping to see if there was a patter, cycle, or routine to his movements. I watched my son and he was fine, but you might want to record his sleep and take it to a neurologist who has more experience. He's young, so he probable can sleep with a light on...

I would think there is a more natural version to purchase. It probably taste even worse...

Pat, He's had 6 appts so far. We could do 2 sessions a week, but I'm very nervous since he's pandas and I don't want to push his immune system to hard. I never thought about the nasal spray being the trigger... he's been on them for sooo long. I'll wait until this tree season passes and pull him off the RX. Thanks for the clue. I have not gone NAET route yet, but it's on the table if this doesn't work.

Thanks for being the forum guinea pig... I'm interested to see what happens. My son had some with cranberry, but not enough to validate any results. I think one small bottle should do... at least it's a good place to start. Then bump up the next time... I think if it were me, I just try to chug it down. I agree it's very bitter... Stay in touch. Hope you feel better. These seasonal allergies has everyone I know worn out!

Pat, That is so difficult. My son started middle school this year and does not want the café food... so I pack lunch ever day. He likes wraps. I try different lunch meats and include different cheeses (sliced or shredded) and change up the condiments like ranch and bbq. I also throw our pizza leftovers in his lunch bag... seems he like the cold pizza. By Friday I'm out of ideas... I might just throw thawed chix nuggets (good ones) in his bag with a dip and they are warm enough to eat by lunch time... They have to be 'cool' in middle school, so they can't have anything to nerdy or embarring... what worked in elementary does not work in middle school... Go see Diary of a Wimpy Kid at the movie and you'll understand

Pat, He is doing 2 allergy shots for his seasonal allergies (he has a lot) and prescribed Veramyst fluticason furoate (cortico steroid). They are recommended by his immunologist and neurologist to help his tics. Do you now if steroids can trigger tics?

My son's last remaining Pandas symptom is his eye tics and his doctors seem to think seasonal allergies are his triggers. His IGEs were extremely high. He is currently on Veramyst Nasal spray and started allergy shots to calm his symptoms. We do the nasal spray in the morning to get him through the day when he's out in the elements. And I believe allergy meds can cause excitement at bedtime... which we don't need. We have noticed an upswing in his tics 1-2 days after his shots, but we figure this is just an heightened reaction to his immune symptom. They seem to calm down a few days later. We only do shots once a week on Wednesday. The allergist says his symptom will eventually 'calm' his IGE level and hopefully his eye tic should get better... We'll see how things progress.

Well... I guess drinking some tonic water can't hurt? I like mine with Gin and a lime I'll have to find an appropriate mixer for my 12 year old. He love cranberry juice.

"Any CPAP in your life?" I keep seeing the word and think you're writing CRAP.... Yes, I have lots of crap in my life.... called pandas Just laughing to myself. I need new contacts.

I didn't clarify with him on just eye tics or tics in general. I'm guessing since Quinine was used for cramping, perhaps it relaxes the muscle enough to help the tics? My eye doctor is going into his 30th year of practice and has worked with our local NBAA team with sports opthalmology, so just to clarify he's not a quick walk in type clinic.

This week I went to my eye doctor for my yearly checkup. The same doctor had seen my son several times for his 'Dry Eyes'. This was before he was dx with Pandas. I filled by doctor in on the latest happenings with my son and his treatments, etc., and let him know the dry eye problem was actually tics. (He should have been the one catching this symptom after 3 visits for his eyes... ugh). Anyway, I explained his eye tics are the remaining symptom, but everything else is doing good. He said I should have my son drink tonic water with Quinine and this has helped some with eye tics. I haven't seen anyone post anything about Quinine before and after researching it on the internet, it doesn't look safe in high doses. Any experienced with this? I guess a glass of tonic water can't hurt? Might have to add some juice to help the bitter taste.

So I guess the bottom line is, although I've cultured the whole family, one of us could still be a carrier? What about the MP... can one be a carrier with it? What's the best way to test?

JAG10- I agree 100%. My problem is I believe the old saying 'knowledge is power'. The more knowledge I have on this disorder, the more I feel comfortable and in CONTROL. I know that it is a sign of OCD, being in control, but it's how I deal daily and reading the forum make me feel that I'm not alone. Unfortunately I have no doctors in my city that I can run to with questions. My family has no idea what the disorder is about. I haven't really shared with outside friends, because frankly it's too much to explain. And my husband is on board, but has not desire to research or read like I do... so it's me and the internet. When I finally find peace and get some normalcy in my life... my 2nd child starts presenting symptoms. We're all in the same boat. I could never do this without you all!

Thanks Vickie, I appreciate your advice and involvement on this forum. She has been on Zyrtec for awhile with no problems. The allergist said with Orlando having the "worst week ever", she needs more meds. We'll keep her on the Zyrtec and bump in Benadryll when needed. No more nose spray! The side effects for Veramyst mentioned stumped growth in children... so I was leery anyway. Dr. Murphy did mention keeping my son off Singular with the side effects it's causing... I believe the FDA is reviewing the RX. My son woke up this morning and threw up... can we ever get a rest?? Take care.