ShannonOtown

I stopped her this past Saturday. It was Friday night she 'heard voices', so we stopped it then. She had the rash before we started the RX (but after she was sick). It's difficult because she got sick then we started her RX. So I don't know if her symptoms are from the RX or residual viral/bacteria. Let's just hope she keeps having good nights. I hate the worrying... you get one better and her comes the next one. Thanks again.

Thanks for the replies. Yes, it was just the RX nasal spray. It's spring break so no teacher available. I forgot to add she develped an itchy rash that traveled around her neck. It went away after we stopped the RX. Her sensitivity to noises are getting so bad, I had to order ear plugs so she can put them in for lunch and aftercare. Her cough was more croupy than harsh, that's why I think it was allergy. I'm going to keep watching her... one more symptoms and she's going in for bloodwork. I thought I was just watching for strep, but now I'm on edge for every type of virus/bacteria. Thanks again.

My non-pandas 6 yr old daughter went home sick from school with 99 degree fever and cough. She had the cough all week, but she is also very allergic to everything blooming right now. 6 other 1st graders left the same day with same symptoms. I took her immediately to walk-in clinic and her rapid and culture came back negative for strep. I'm kicking myself I didn't test for mycroplasma p. Her fever was not very bad and her cough cleared up okay... still somewhat croupy. That same week we started her on new nose spray prescribed by allergist (Veramyst). How bad does MP get? Is there mild forms? The week following her illness, she started bedtime anxiety and not wanting to go to sleep (this is my best sleeper that jumps into bed with never a problem), she woke up 4 nights in a row that week walking the halls at 2am in the morning. On one of those episodes, I put her back to be and she looks at me and says "Mom, I hear voices in my head" "I hear a little girl screaming". I think I turned as white as my teeth!! Then yesterday she had a pee-pee accident in the middle of the day. She has never had any problems in this area and I just can't wrap my head around this... No tics, ocd or other problems. On one hand, I'm freaking out. And on the other hand I hear my husband saying she's fine. I took her off the RX and she had a good night last night. What would you do? I guess I'll continue to watch her. Perhaps it was the sickness with her new RX. I see everything through PANDAS glasses and I'm trying to see things clear. But 'hearing voices' is a bit unnerving!

Thanks for the reply. I guess I'm just trying to understand the physical feeling he is experiencing. Is it just a tired/exhausted feeling from all the blinking and you just want to rest your eyes? Or just an annoyance and you've had it by 9pm a night? It's the mother's desire to take away all that bothers her child... if only I could.

Thanks Cherie, I guess I just assumed tics were something you get use to and it just becomes part of your day... but that sounds silly now that I think about it. If my eyes were constantly blinking... I would be annoyed and tired by 9pm too. I have implemented all you suggested on the mag, Bs, multi v, and baths from previous post; however it's the TV and video games that is the most difficult for a 12 year old boy! I think I'll start with a spring break vacation where we have no electronics and see if that helps him. It's easier when he's away from his stuff.

My son's eye tics are a roll/blink. By the end of the day before bedtime, usually watching TV, he will start pushing up and holding his eyebrows or pulling at the edge of his eyes. It looks to me that he's trying to keep his eyes from blinking and holding them open. It's apparent the tics are bothering him and at times he just puts his face in his hands and with his eyes shut and rests... Does anyone have experience with this or have children that do the same thing? He never complains, but I feel so bad for him...

Vickie, I total agree with you. My first email at 2am on a Sunday was to Dr. K, after I came across this forum website and final figured out my son's 3 year crisis was called PANDAS. Dr. K emailed back and wrote my sons symptoms sounded like PANDAS and he needed IVIG asap because he was 11 1/2 years old. Of course I was totally beside myself... what to do?? Long story short, my son is doing great after abx... he was not an extreme case and hopefully will never need to go the IVIG route. I think those that travel the road to Dr. K are the extreme cases. So his 'cured' statistics are extremely skewed, since he doesn't see those patience that get treated with abx. My son is doing great, but I know he is not cured... I used the word 'remission' too. There is not a day that goes by that I don't see him through PANDAS glasses and look for the symptoms and quirks that go with this disorder. I do feel we are on the edge of a breakthrough and can't wait till a cure is available... or at least better understood. Shannon

I know many on this forum use Magnesium for tics... If you are using too high of a dose, this can cause loose stools.

.... I have nothing to say but fight, fight, fight,,,, you wouldn't see me leaving until I got my way or they arrested me. The loud squeaky wheel gets the oil and this is your son. If you feel like this is the safest spot, then I respect that decision, but you must demand the right medical treatment. You keep asking for the next person in charge... until you get what you want... I can see myself standing on the nurses station yelling for the manager now...

My son was undiagnosed for 3 years and threw up from time to time. Our doctor said it was strep symptoms and very common. (Just like the even red rash on his tummy and back). I wouldn't call it a cyclical patter though...

Could the symptoms with your entire family be environmental?? You hear stories about 'sick homes' with molds or bad dry wall, gases, etc. Because all of you all so sick, I would look deeper. Just a thought.

Can someone explain the reason you use different strains? Do certain 'types' provide different results? I use Nature's Way Primadophilous Kids w/ Lactobacilli and Bifdobacteria that is tablets and kept cold. And will also use Florastor Kids that is in a packet mixed with juice that has Saccharomyces boulardii. Then I add yogurts w/ probiotics in the lunch boxes. I have no rhyme or reason I use these 'types' but to mix things up and provide a variety. Hopefully they work together? Are there any 'rules' we should know when giving these items? Thanks always for everyones knowledge! Shannon

Did a double check... I see it now under the OCD. I read way too fast... sorry.

That good news... I pulled up the postcard on the pandas foundation website and didn't see it listed... http://www.pandasfoundation.org/got-strep.html

I love to see these articles... keep them coming. I just wish the "Got Strep" campaign included 'Tics' on the symptom list. That was really the big symptom that got me researching. The handwashing, moodiness, sleep problems, urnination issues just seem like some type of phase my son was going through, but the tics sent up a red flag.

"If I am right, the proper immunosuppressive treatment for PANDAS will be TLR-specific drugs (already in the drug company pipelines for other reasons)." Can you explain what the TLR drugs would do? Perhaps change or suppress the TLR signaling pathway activation?? Then IVIG treatment would not be needed? What are they be developed for now?? What type of disorder are they focusing on?

Thanks for the good information. I'm looking into the vegan omegas. I've now entered the world of organic and reading every ingredient label... it's amazing what they put red dye into! My mother (we call her grandma tree- hugger) always says, "Man is slowing killing himself". I now understanding what she means.

I'm about to go read with the kiddos, but I feel a need to share a quick note and my experience. When you read these forums you can feel guilty b/c your child is not falling off the deep end or 'that bad'. My son was the same way... he was doing good in school (but would struggle at times), had friends (but not many), mood and defiant (but reaching puberty) cautious, careful and worried (but he's intelligent and just questions things). I had an excuse for everything. I knew deep down that something was not quite right, but things were functional. How can I complain when parents on the forum are buying weight blankets?? Now in hindsight, after antibiotics, my son is a different child. I tell my doctor it's like the cloud is gone and the family is not walking of eggshells all the time. My sons face is bright and full of fun. It's such a 180 that you don't even realize how bad it is until it's gone. There's no arguing and I don't find myself explaining every little thing.... we're RELAXED. He's enjoying life. Now days, I can handle a new tic or one bad night of going to the bathroom several times. I dread the day (if and when) the cloud returns. Trust your instincts.... Shannon

Thanks all... I'm really focusing on the Chlordane sensitivity result. Was my son exposed to this pesticide and now he is showing a reaction to it. We remodeled a home about 6 years ago and my son shortly after moving back in started having symptoms. I just got off the phone with a doctor that specializes in this toxin and researches symptoms associated with this pesticide. He said most homes in Florida were treated with this pesticide and my new windows might have sealed up our home and built up high levels of fumes. The research on this pesticide is very scary and there is enough evidence that proves it affects the immune system. We just moved this past year, so I'll never know if the air quality was bad. I just ordered a kit to test for Chlordane in our current home. It makes me wonder what is the true 'cause' of pandas? What is weakening our children's system? Vickie wrote a topic a while back that mentioned all the toxins we encounter everyday. The more you start reading about the chemicals in our water and food and air, the more you think of the effects.

Faith,,, Well, when I ordered the test I research several labs and I thought I was ordering an IGE, but I think you are correct and it's IGG sesitivity test. Both are available for testing. My paperwork doesn't clarify exactly. That confuses me more since I'm trying to lower my sons IGE score? Would food 'sensitivities' increase IGE blood test results? Or is his IGE related only to his seasonal allergies that he's showing an allergic reaction to on his scratch skin test? I guess either way avoiding anything his sensitive to would help. I wish I had a doctor in the house...

HI Susan, I don't know how you get sensitivities to an allergen. My son never eats grapefruit or juice and just happened to have it that day because Grandma had it in the refrigerator. And lets hope his sensitivity to Chlordan is not from exposure. The whole point is to avoid those items showing sensitivity. Here's what the literature that came with the results say: Avoidance of reactors can reduce the load on the immune system. The goal of avoidance of reactive substance is to allow immune mechanisms to reset. This can restore tolerance, enhance repair and reduce the autoimmune and immune dysregulation load on the body's defense systems. IF this is true, then doing allergy shots is not allowing the "immune mechanisms to reset". I would think quite the opposite....but I'll stick to our plan. We had our 2nd shot yesterday and my son showed no reactions or symptoms. We'll stick with one shot per week, instead of the recommended 2 per week. Here's more information printed in the literature and results: Reactive items are an adverse load on your body's immune defenses. This means a reduced ability to respond to new or chronic infections. Reactive items also decrease immune activities needed to repair your body. This can provoke inflammation and self-attack ("autoimmunity"). Avoiding reactive items can break the cycle of impaired defense and repair, allowing your body to start the recovery and repair process. So if your body is defending allergens all time (ie. High IGE results), it's immune system is week and can't fight infections. Makes sense to me.

I had mentioned in recent topics that my son (12 years) is doing really well post cefdinir and augmentin. His only remaining symptom is his eye tics, which seem to increase when all his other symptoms waned. His IGEs where flagged high on his blood work, but his other IG subclasses came back strong and we've never considered IVIG. Our neurologist and immunologist believed his high IGE/allergies where the obvious trigger for his tics and our immunologist suggested allergy shots. We just started his allergy shots this past Friday. (I know everyones opinion on this... but I made a hard decision) In the mean time, I ordered an IGE food panel test because I was curious if food sensitivities where bothering his system. The allergist we are seeing said don't waste your money... but it was a mothers intuition. I just received the results yesterday. I'm relieved there are just a few to work with eliminating. Strong Reaction: *Red Dye #3 Moderate Reaction: *Tuna *Grapefruit *Sodium Propionate (Preservative) *Chlordane (Pesticide found under houses to treat termites, found in almost every farm/field around the world and possibly in tap water- banned 1986 for neurological problems, possible immune-def problems and the list goes on and on. Can be ingested, inhaled or absorbed through skin) Here's the twist. My son started a new throat/breathing tic Monday night and his night time frequent urination kicked in again. I immediately thought of the allergy shot on Friday. BUT looking back to that day, he drank 2 glasses of grapefruit juice and ate tuna fish on crackers for dinner. AND on top of that, his 2 Omega Chewies I was giving him every day contains TUNA! I always suspected he was sensitive to Red Dye. My intuition was right. So the question is, How does allergens and sensitivities play a role in Pandas? Is it just another problem with the immune system getting out of wack and the IGEs upsetting the balance? Could our kids be sensitive to viruses, bacteria, and allergens? Now about the Chlordane. I'm doing an air quality test to see if any traces are in our home. And calling the water dept for a report on the water quality in our city. And I guess we're going organic, since we can't be sure if it's looming on our produce. The pesticide was used heavily on orange groves. We live in Orlando and every home is built in old orange groves! This is scary stuff when you start reading the effects and how prevalent it is in our environment. No wonder our children are showing increases in neurological problems! I'll reply back with the results on the air quality test.... there's always something to dig deeper into.

can you tell me what that home kit is? thanks. I ordered the Basic Act/Elisa Food Panel IGE test for $350 (ouch) from directlabs.com There are other test recommended on the forum from Great Plains Laboratory, they seemed more expensive. Look for a test that includes dyes, chemicals, molds, etc so your results give a broad view of sensitivities.

Interesting connection. I know a lot of parents on the TS/Tic forum do food IGE allergy test... I'm just did one for my son last week (out of pocket home kit) and I'm waiting for the results today. I will definitely look for a Gluten sensitivity number and reply back if it's positive/high results.

Hi Elizabeth, The dreaded Allergy Shots is the recommendation from our immunologist, who works with our Pandas Doctor. Our Allergist is local and not familiar with Pandas, but I gave him lots of information to read. We already knew my son was extremely allergic to seasonal stuff b/c we had him tested him 4 years ago when he started blinking a lot and I thought he had itchy/dry allergy eyes. No one told us after 4 doctors that his blinking was an eye tic... urgh. Anyway he is allergic to pine, oak, mites, molds, etc. When I explained to the allergist that I don't want to aggravate his immune system and I'm nervous about his pandas symptoms returning and we need to keep his system calm. He looked me straight in the eye and said does your son's 300 score on the IGE show his immune system as calm? I knew he was right... the answer was no. So we started him on daily Veramyst and shots this past Friday. We go twice a week and he has 2 shots per visit. My immune doc said give it 6 months. So that's the plan..... Like I said before, he has strong IGs in the other subsets, so I feel okay about this decision. I know every test has different ranges, but if your 450 score was flagged high on your test, then there is an allergic reaction going on somewhere... his body is trying to fight something... it could be seasonal or food related? Shannon