3boysmom

Totally agree with you on these kids connecting. He has connected with a few 'Pandas' kids on xbox but they were younger. He is in 9th grade and attends the K12 school too! What grade is your son in? Son has had the worst OCD ever (for him) at the start of his new treatment and school has been especially difficult. It has calmed down a bit but he is only doing 3 classes out of 6. He does do weekly neurofeedback which he says helps him focus better and seems to be helping a bit thru this present "healing crisis." We are in WA state and you? Thank you for your reply. Take care.

Our son has been on this journey for 3+ years as well. What grade is your son in? We are doing K12 public on line school and it has been great! He was on a medical 504 as well, but he just needed something else and special education wasn't for him either. He can do the work, but the attention and OCD get in the way. What state are you in? I wish ther was a way for these kids(PANDAS) to connect. Someone said there was a FBook site. Do you know one? Congratulations on your "star of the month". So nice when we can here positive things! Linda

Please send the link to me as well. Linda

Hey R., it's Linda...sorry to hear about N! You could test for H pylori (spelling?) or have a metamatrix stool test done. They are suppose to be thorough and I think it even looks for parasites. I'll call you later in the week and catch up....also, I think we could both use a glass of wine! Prayers, Linda

3 or 4 days after the one day fever was gone (and we thought we missed the bullet) is when we heard the loud vocal tics. At that point we thought his problems were only triggered from strep and he was on Augmentin XR 1000 x 2. We are looking into PEX because we were approved by insurance for one year of IVIG and so we flew every 8 weeks and did 7 of them. He got better with the first 2 but always slipped and then just kept getting worse with all the others. Found a new doctor that tested for a lot and found a ton of different infections. He spent the summer clearing one infection at a time and DS was doing great until the coxsackie virus. This doctor is not a "PANDAS specialist" but very smart and has been following Dr Sweedo and her work since her start. He is A bigger fan of PEX, and so we will begin to learn more about that option and get ourselves educated before deciding. Dr. L actually wanted us to go the PEX route 2 years ago but we did IVIG with Dr b instead. Any thoughts on PEX? Linda

This happened to us at Thanksgiving. DS 13, treating for 3 years as strep only PANDAS. Haven't seen a fever in years and then at Thanksgiving, a one day fever of 102. At first I was happy that he got a fever because I saw it as a positive sign that maybe the IVIGs fixed his immune system and he got a fever like he was suppose to. Nothing appeared to be slipping until about 3 or 4 days later. Then tics appeared for the first time. That is when we moved from PANDAS to PANS. Could not figure out what he was sick with because he never shows sympoms with physical things (like soar throat). Strep and flu tests came back negative. Continued to spiral down until 3 months later Dr. T had us test for Coxsackie Virus and that was what was wrong. Valtrex has helped but we are now looking into PEX. Not trying to scare you, just if your DS continues to backslide, then there could be a hidden infection besides strep or the normal stuff.... Or it could just pass... Fingers crossed.

Are you sure there is not a new infection or illness causing problems? Yeast? Coxsackies Virus or any other illness that may not respond to your current antibiotic. Just a thought... this is what happened to our DS. Linda

Lexapro got me through a very tough time for about 8 months. I still suffer from PTSD, but it is worse during the anniversary time of the Christmas holiday because that is when our DS woke up a different child and our life never returned to normal. I know how you feel. I can't hold it together as well as I used to now a days. Prayers to you! Linda

There is a book you may want to read: Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock, Cameron Stauth He also has PANDAS mentioned in his book. Blessings, Linda

Not sure if it is PAANDAS as in the behaviors came from an infection that was caught or if this is a bad reaction to vaccinations alone. Many parents report their children's autism came from vaccinations. While you are looking into PANDAS/PANS, you may want to read up on some vaccine websites and DAN doctor protocol.

We don't do k12 for school refussal, but to limit exposure and he was embarresed with his loud vocal tics and body jerks at school.

Really? I did not know about the teens with PANS on FB. OUr DS13 does not have FB, but is lonely and I think it would help if he could communicate with other kids his age about going through this mess. I wonder how we can find out about it? Linda

Keep posting, many of us do want to answer but check in at random times and for me it is often when I am in between chaos. Don't go back to that pediatrician for help with this because he/ she would not invest the time required to understand this illness and the doctor would need to have the desire and motivation to do so. NOT even willing to have the conversation! If it were there child? Prayers linda

I forgot to add that with k12 they will follow IEPs and 504s because they are considered public school.

WE are doing k12: It is not considered "Home Schooling" but instead "Public School from Home". I do not write the lessons, they follow the curriculum of the school district in which you live, it is free, they send all the books. I did not like the "homebound" public school program because I can't imagine a 7th grader getting all that they need from a teacher in a one day few hours a week set up (which is what they offered us. With k12, all the lessons are provided on line anmd so he can go back over them until he understands and he can work at his own pace. I did however need to get a math tutor because I didn't have time, energy, or the understanding of how to "teach" algerbra. I have to note that our DS is self motivated, wants to do well and never video games, so we don't need to push him. That would make a big difference.

Please explain " air hunger". I have seen that written on this forum before, but never paid attention as we were dealing with OCD and ADD for several years. We are newly dealing with tics and I wonder if the sucking in gasping tic that our DS is doing is "air hunger".? Is this a tic you are refering to? ( seems to do it after each word or so or on a good day it might be after a complete sentence.

It probably depends on what state you are in as to what is offered. We don't have school pycologists or social workers on campus and 3 Sp Ed teachers to meet the needs of 40+ kids with autism, ID (MR), LD, ED, dyslexia, OHI, ADD.... Even though I teach Sp Ed I am realistic to know that in his worst flare, if I could not keep him from walking with his face against the wall at home, what was the teacher going to be able to do? In a flare up, some of our kids require way more than what a 20+ year old would have been prepared for in teaching school. My DS is doing K 12, he just doesn't really fit into any program offered.

And don't forget the probiotics, so that yeast doesn't create more issues.

OMG, I think my son figured that out as well, he paces and we say "sit down and relax" and he says "that never works" and then he grabs his basketball and shoots hoops and runs drills until he is soaked with sweat. Makes sense, how come I didn't make that connection? Tell him thank you.

I teach Special Education. Here is an additional view... 504 helps to access the grade level curriculum and accommodate the needs of that child to learn the materials/lessons for that grade level. An IEP is thought of as more of a modification and that child is working on their own I=Individual, E=Educational, P=Plan. So an IEP could be more for a child that is not ready for that grade level material, so the curriculum might be modified, however with a 504 you would give the grade level lesson but may accommodate the way is is taught or evaluated. Example may be a 3rd grader would have an IEP for math that may have them learning to add because they are not ready to learn multiplication like the rest of the class. A 504 would have the student learning multiplication with the rest of the class but may accommodate as in allow for reduced amount of problems, or extra time to complete the assignment or allow for extra bathroom breaks. A child with an IEP will have accommodations as well as modifications but a child with a 504 will most likely have accommodations to access the regular education curriculum.

Hello fellow Texan, we live in The Woodlands. Did you know that Kathy Alverez (Dr. Cunningham's assistant for the Cunningham study) is from Kingwood? Just unimportant trivia.... Linda

Wow, very helpful and kind of scary. So, what to do, what to do ?

The confussing thing for me is that DS13 had very high D2 and DS10 had very low D2 and were both having issues (although different issues) both PANDAS. Well now I believe that DS13 has moved into the PANS category with the last flare coming from a virus and not strep. I JUST WANT SOME FOCUS for this kid. Holy cow, he is SOOOOOOO SLOW! I am at the point of just giving anything a try and praying for the best.....is that wrong?

We went 3 years with only Augmentin XR 1000 but now since the Coxsaackie Virus in November, DS finished 20 days of Valtrex and went down hill a week after it ended. Dr. just called in another month of Valtrex and said that some people take anti-virals for years. I really wanted him off meds by now and didn't want to add more (and it was $340. to fill a months worth - not to mention the augmentin cost times 3 sons)! So I guess we will see how long this will be taken. Linda

Those statements were quoted from the cover letter that was sent generically with each participant in the testing and not specific to our results. Where did you get the D4 from?Didn't see D4 on anything. Linda