3boysmom

Jennifer, Dr.B in CT will order many, many tests. He will look for all of those coinfections that have been mentioned and he will order immune testing and Lyme testing through Igenex.

At first, I too was excited about that article. Then a few minutes of thinking about it made me think that it will be used to force shots on our kids and used as evidence to no longer allow for "exemptions". There is NO WAY they will allow the findings that show a connection...I pray I am wrong! I teach Special Education. When I first began teaching in 1991 I didn't have any students with Autism. I taught for 12 years and then stayed home for 7years and had my 3 sons. In 2009 when I returned to teach Special Education, I had 2 students with Autism and the other students had various learning disabilities. This year...I have 15 students on the Autism spectrum!!!! (In a small neighborhood elementary school. People tell me that we are just diagnosing it more and that some of these kids would have just gone under the radar, but I am talking about children that do not talk or answer anything. They would have been noticed! Something is going on, all those parents can't be wrong or imagining the timing of the vaccinations. If they find no connection, I am still not vaccinating. Blessings, Linda

The involuntary movements are not S.C.? I'm sure that has also been ruled out!

Those are my exact thoughts! I read others that were "hold outs" like us and staying on antibiotics alone and read how they moved on to IVIG and seem to be having some of the same issues as before. So, what am I hoping to accplish? Our sons immune tests came back with bad results, so insurance would probably cover it and Dr.B is ready for us....but WE are having second thoughts and enjoying the relief of dysfunction (for the moment). I wish I had the right answers.....

When we saw Dr.L, She mentioned a sibbling conection and suggested removal of our other 2 boys' T&A. Our ds11 (Pandas) already had his T&A removed 3 years before we knew about PANDAS. They had big tonsils and asymptomatic. to strep. The ENT would not give us antibiotics prior to surgery but on the day of surgery, I practically begged him to put antibiotics in the "drip" & he did (surely just to shut me up). Then in the recovery room I asked for a script of Augmentin for 2 weeks, he said 10 days and we met in the middle for 12 days! At the same time, we were waiting for strep titer results on us all (taken before surgery). They came in very high on the non PANDAS (as far as we knew at that time) brothers. So our pediatrician agreed to put them on Augmentin (like PANDAS son has been on for over a year) as long as we sought out guidence from a specialist. We then flew the 5 of us from Tx. to see Dr. B. That was 6 weeks ago & we just got the new strep titer results in and the middle son's anti-DNase has gone up from 780 to 1920 in just 4 months....WHILE on Augmentin. So now they are all trying Zithromyicon (changed 3 days ago) because PANDAS son's results came back positive for mycroplsma and maybe the other 2 boys are having strep that is resistant to Augmentin. (Dr .B believes that strep was hiding out in the sinuses of our middle son. This is a difficult puzzle to solve, and scarey to live through, but while we still have new things to try; we still have HOPE. No one has td us that they have nothing left to offer and in the wake of all the issues in Japan and around the world right now, I take this "cross to bare". Sorry to ramble and for the miss spellings, we are camping and I am on my iphone. Prayers for healing, Linda

People on here call it "turning back the pages". When you regress first as you are recovering. We have not done IVIG, so when I read those posts, it keeps me from taking the "big" step. I think I will begin a new topic on this forum and ask more questions.

We are at the same crossroads with our ds11. If he is doing fairly well, should we leave it as "good enough" and possibly miss a chance for more recovery or do the IVIG and then?...is there a chance that IVIG will set us back to a place that we never improve back to where we are now?

Wow that may explain why ds11 is always hot and maybe why his ears sometimes get red. He is always sweaty. I would mention that he is always hungry but that is probably just a normal 11 year old growing boy thing. ThankS for the info. Can this be related to family thyroid problems or is this something totally different? ( dh and his mom & his sister have thyroid issues.

Our PANDAS son also has Sydenhyms Cohrea. My sister has lupus and although I know that it is also autoimmune... I didn't know about the hyperthy...thing...what does that mean? ( we are camping & awa from the computer. Only my iPhone. Linda

I meant "tonsils!". Typing on my iPhone and can't find my reading glasses=trouble.

I got that same "you know that is controversial" from our ENT when I asked him to culture our son's tonsils when he removed them. He said that it was not necessary because he "DID NOT have strep!". I told him that Dr. L requested the culture and he rolled his eyes and said that it was a waist, but gave in. Results..... Core of the tonsils were POSITIVE for strep. At the post T & A surgery....he sent in his Physicians Assistant and was "too busy" but not too busy to consult with her outside our exam room door and then send her in to remind us that PANDAS was not "real" but contoversial. Apparently I still have unresolved issues with that experience!

I meant to say..."on the other hand"

Did you mean to type 320? Does her (Dr. Cunningham) graph even go that high? Of ALL your results...that one stands out (in my opinion) the most. Let us know what is discovered. On the other the history of strep and the behaviors all sound like PANDAS. Did you have ASO & Anti Dnase torres run? Prayers, Linda

Wow Peg, you have been through so much. I've seen youb post throughout the years and always hope to read that the magic answer has been found for sweet Allie. I can't remember though if you all tried Augmentinv XR 1000 yet. Also when our son "got" PANDAS in 2009, one of our other sons got HSP at the same time. That is how we figured out that they all had asymptomatic strep. HSP is an autoimune illness from strep. It is said to be temporary, but it swelled Carter's hands and feet up and he could not use them. It was also very painful. I'm only mentioning it because one of the things they did was monitor his urine for internal problems...and that is the more serious posibility of HSP. I bet your doctors already ruled that out, but I thought I should mention it because o it comes from strep and swells hands and feet (and other things). Prayers to you. Please post an update, I am concerned for you both and have been following this latest issue. How in the world could she have STREP after all that?! Linda "

We are considering IVIG for our ds11. He has improved very much with antibiotics over this year and a half...my fear is that we have turning back of the pages that does not reimprove to wheee we currently are. Has your son returned to the baseline that he was at before IVIG or are things still worse than right before IVIG? I hope the depression continues to lift....it is heartbreaking to see! Prayers to you and your precious son, Linda

English, Irish, Scotch, Frech, Russian, Italian, Sirian, & Osage Indian! Complete American melting pot..... Do we win? Anyone beat that crazy mix?

Oh yes the days of being 16.......mean girls.....perky boobs! You just brought back some old memories! Good luck with the treatment and congrats on the grades. Happy late birthday. Linda

OK, I have not posted anything for awhile now. I have been too busy with the reality that we no longer have 1 son with PANDAS, but 3 sons with this! I feel that I NEED to reply to this BS behavioral plan that the school has set up for your son! I have never posted on here that I am a Special Education teacher. I have a degree in Reg. Elem. Ed and Special Education. I have been working with special needs students for about 15 years. THAT IS THE STUPIDEST PLAN I have ever heard! Candy to control an uncontrollable head tic! Seems like this is sure to raise his anxiety and cause him to be reminded “every 2 minutes” that he is a failure at something that his teachers think he is doing on purpose…how stressful! When Autism began to sky-rocket in the schools, we had a diagnostician that told me I had to write a B.I.P. (Behavior Intervention Plan) for all Autistic students. The first student she requested that for had "hand flapping" behaviors. After working with this student I began to refuse to write a B.I.P. for tics and "steaming" behaviors! I told her that you can not “BIP” a child out of Autism! Also, there are always replacement behaviors, if it is something you can overlook and live with, then ignore it or it may be replaced with one that is worse. I hate reading things like this because it makes some of us very dedicated teachers look like a bunch of idiots. We now have 15 AU students at our neighborhood elementary because our Special Education Team "gets it" and so the reputation has gotten out and people are moving in to have their special needs children attend. I am not trying to brag, but only pointing out that "we" would never suggest candy to stop an uncontrollable "tic". The other ideas were good....sensory breaks, go for a walk....but I would think that trying to minimize the issue (and avoid putting it in the “spot light” with everyone hearing and looking up at him when the timer went off) would be a good start! How about having him sit toward the back of the room where he is not having an “audience”. I can’t remember how old, what grade, or if he has special needs other than PANDAS or I would be much more specific with ideas. He needs support, encouragement, understanding and consoling. I do not know if testing his Para Professional would be the answer, because it could be the child that sits next to him in class that is the carrier...then what? Strep is everywhere in the public schools and many parents load their sick kids up with Advil and send them to school. Good luck with your school meeting and even though you do not want to be the “squeaky wheel” you do not have a choice…who else will stand up for what is best for him? Blessings, 3boysmom

I wonder what happened to him.....

AGREE!!!!!

Sorry, hit "post" twice!

3 boys and they present differently.

3 boys and they present differently.

wow! Your #3, #6, and #10 sound like my ds11! I have never read anyone else describe the #10 before. Isn't a strange one to be in the room with. It blows me away to watch how he acts out the TV moves with such accuracy. We too have made much improvements on antibiotics, but are at a standstill. Just returned from Dr. B yesterday and it looks as though it is time to move onto an IVIG. Dr. L had said the same thing, so 2 PANDAS opinions for IVIG....time to move forward. I hope we have good results like you. Keep us posted! Prayers, Linda