BoyIowa

I got my doctor to order the lab to see if I am a carrier. I was at the lab for an hour while they figured out what test and what kit to use. They did a nose and throat swab just to be sure. Now I wait for the culture to come back. Dh was on abx for a UTI, but I want to have him tested too. Does anyone know how long he should be off abx before testing? My dd has had strep in her daycare almost every day this entire past year. I am sure that one of us brings it into the house. It's like I need one of the cleaning chambers to walk through as we walk out of the building. : ) I am also waiting for my dd doctor to get back into town to look at the notes from my ds doctor to have some testing done on her too. The next step will be the dogs. The dogs spend most of their time outside or in the basement, but it could be anyone, right?

I am so happy or you, that's great news! I pray that we are all there some day.

We were at a neurologist last month for another opinion and he had documented a tremor in his notes, but did not mention it to us. We had not noticed it before, but we see it now.

I have Cigna too, but not the 'beech street" Cigna - I think it is different. We are waiting to see if they cover our IVIG. I have been praying every day. I am trying to get prepared and gather ammo if we get denied. Powpow, I would appreciate anything that you could share.

What I want to know is - how many of these girls are still seeing the Dent doctors? If they aren't seeing the majority, should they be continuing to speak about or for them? Who is contInuing to pay for their services?

I have an appointment with my doctor tomorrow and was wondering if anyone had some great medical literature that I could share with my doctor to help compel him the test me to see if I am a carrier of strep? You see, this is the family doctor that used to see the entire family, before we had to find a pediatrician more sensitive to my ds needs. My ds is acting like someone around him is sick. I haven't been feeling 100% (likely stress and lack of sleep), but everyone was on abx last week except me. My dh was on abx last week for a UTI, my dd for a ear infection and ds is on daily abx. Also, is there anything else that I should ask doctor to test for? I am considering Igenex Lyme test if my vitamin D is still low, but that's for me. I am looking for things to keep my son healthier. My ds has PANDAS, Lyme and Myco P. Thank you!

That is great news, I hope that we will all make it there some day!

We tried clarithromycin when he was 7 for a chronic sinus infection. I recently spoke with another parent that is on Biaxin XL for the same things as our ds. Her child was a few years older than ours and was under Dr. Ts care. We did find a generic clarithromycin ER that would be cheaper for us. We don't get the coughing, but we do get the thick mucus and chronic sinus infections (while on antibiotics). Hope it works the same. We recently added great vitamins, digestive enzymes and Methyl B12 so I think we have the support for his body.

Does anyone have good results with biaxin? We are on Augmentin XR and Zith for PANDAS, Lyme ( WB IgG positive), and recently found Myco P (IgG and IgM) and HHV 6 IgG. We were considering asking to switch the Zith to Biaxin XL. He was on generic clarithromycin before and did well with it, but was not on anything else at the time. My ds is 8 1/2, dose anyone think that combo may be too much for him?

Question: 1. Is your child taking long term daily abx for PANDAS: yes Also found Lyme and recently MycoP 2. which abx and what dose: Augmentin XR, 2000 and zith 250 (previously tried amoxicillin and augmentin, but switched to XR recently) 3. what is your child's age, weight: 8, 64# 4. number of severe PANDAS exacerbations: I don't know how to quantify. Nothing extremely severe like others I have heard, but exacerbation when tooth came out and strep in sibling and walking pneumonia in sibling and anything that looks like a cold in house. Been on an up and down roller coaster for 2 years; just when we think we might see a light, we hit another tunnel. 5. current status of remission at this point? On abx for 6 months and still on roller coaster. May have a carrier in home.

Our DAN just suggested that we go there for their opinion and our DAN would order stuff/do what they suggested so our insurance would cover it. Only problem is that our DAN is 3 hours west. Franklin is 3 hours east for us. We are looking for someone closer too.

We see the same thing ourselves. I think ours is due to two things. 1) During the week at school I think he tries to control his obsessions and compulsions for fear of kids seeing. Then, when he gets home he just lets it all loose from struggling all day. 2) No schedule. No being told what to learn/do. Less stress. Less peer worries at home on weekends. Thus, homework after school at home is a chore!

Our DAN in Iowa recommended seeing Dr. Usman or Dr Van Dyke IN Madision. http://www.wisconsinhyperbarics.com/ I think our DAN sees them as more of experts than they are and wants to hear another opinion. I got the impression that these 2 doctors would not act as primary, but only to give advice to our DAN so that our insurance would cover it.

My ds has fidgeting with his exasperations.

New article today in Natural News - I love this site!! http://www.naturalnews.com/034629_Andrew_Wakefield_BMJ_Brian_Deer.html#ixzz1jFvr60jl

We were told by a DAN that red ears was a sign of a dairy allergy or intolerance.

Did I miss the: "I have a one-page write-up about my research and recommended lab tests [see end of article] that I am happy to share with the family or physician"?

We too have been on abx for several months and neuro didn't scoff at abx. Went to try and get neuro to order IVIG. He scoffed at IVIG. He and I discussed the article that you had referenced. I did remind him that IVIG was the first course of treatment discussed in the paper. He then said that he had read somewhere that IVIG should only be used in a study and offered to write Swedo. I was impressed that he was keeping himself informed and willing to write a letter. I have a couple of doctors willing to do IVIG, but for cash. We don't have that kind of $ sitting around. And the recommendations were both for multiple HD IVIGs. We did just have T&A out and switched to Augmentin XR and are adding Methyl b12 and looking for a local CBT. So, I guess we have a few other things to try while we try and get IVIG covered by insurance.

Love all your posts, they are great.! I needed some encouragement. I too just today was told that it was more likely TS or the new 'PANS' and not PANDAS. (yeah, the pediatric neurologist read the article that was just published). What about the OCD and anxiety and intermittent ADHD type symptoms? But does it really matter what you call it? If the reaction is from an infection and is considered auto-immune shouldn't the cause of the reaction be addressed? We too have no history of anyone in the family that had any of this type disorder. We have been told to do IVIG by Dr K and Lyme doc; trying to find dr in our insurance network to order it. Dr today said that there has been no evidence that IVIG is effective for kids like ds and that Swedo does not recommend IVIG unless it is done in a study. Tried that - didn't meet criteria for study (>6 months before receiving diagnosis). Dr said that he was going to write Swedo a letter asking for advice on treatment. Will Dr get a response for Swedo? We too went down the let's treat this, now this; now let's try this or this (symptomatic whack-a-mole). Everything seemed to make things worse. Sorry to vent, but another doctors trip over 2 hours away may have been a waste of our time.

That is funny, good idea. I would consider that except that he usually sleeps flat on his back. We were given lidocaine for numbing before the shot. Did the Methtl B12 work for you? Did you get the 1-2 week hyperness? Any other advice?

Went to see a DAN doctor last week. Suggested we add Methyl B12 to the mix. Ds hates needles, how are we going to give him a shot at home? DH doesn't like the idea of it. Will it help? A bit worried about the 1-2 weeks hyperness that it may bring in the beginning. Please let me know if anyone has used it - the good, the bad, the ugly.

My doctor said that we could use Tylenol with codeine or ibuprofen for the pain and swelling in throat. We are 1 week post T&A and are taking both as needed. My ds doesn't have autism, but I worry about what was in the vaccines that he had as a baby and the things that I read about that we were told were good for us and our children and now we are finding more and more that was hidden from us.

I am shocked and mortified. I was told that PANDAS was on the autism spectrum. We were told to give Tylenol when we got home from the vaccination!!! And my ds just had T & A out and they gave him Tylenol with codeine.

My son and I just had T&A out last Wednesday 28th together. I was told that I was crazy having it done at 39, but I should have done it years ago. I was there with him all the way. I am in so much pain and was sick from anesthesia and pain meds. Ds is 8 and doing much better than I, but still sore. He received tylenol with codeine for pain, but we alternate with ibuprofin for swelling. He is on zith and Amox for Lyme and PANDAS and on diflucan for yeast. He too has the white on his tongue. He has been very clingy since the surgery and very emotional (doesn't want to be alone). Tics and fidgeting much worse and he can't control his OCD as easily. I think that the abx and his body are fighting hard trying to heal that throat and prevent/ kill any infection. So, I was expecting that his PANDAS symptoms would flare. I am hoping that the removal of the T&A will remove the breeding ground for all the viruses that seem to be giving chronic sore throats. I am also hoping that his flare subsides. We are waiting for a different script or Augmentin XR to get filled and are seeing a DAN doctor to look at Methylation and other things to fight this thing. Be strong Tami and hang in there!!

That is great news. We are going to see a DAN doctor on Friday that sees mostly autistic kids, but has signed up to learn about and treat PANDAS kids. They said that they have had good results with Methyl b12 in PANDAS kids. I am excited about our appointment!!!!