3boysmom

Thanks!

I hope you "catch a break!". Seriously, how strong are we expected to be? Praying this is short lived! Linda

Do you think a short steroid burst would help? Any sinus stuff. Our child with night terrors usually has them when he has strep in his sinus cavities. The antibiotics never clear it until we add musenex and a week of steroids. Just thinking out load. But, yes, the PANDAS kids are concidered "canaries in a coal mine". because they respond to the sicknesses in their enviornment.

We too have cancelled ( about 4 weeks ago). So, it was nice to see you every 8 weeks for a year! And our husbands drew strength from each other. Hunter no longer was improving after the 4 th IVIG. Then got very very bad before #5 but continued to go down after #5 & #6. Dr B said it was the myco P keeping him from healing but after 5 different antibiotics the myco kept climbing. Dr B wasn't sure what antibiotic to try next. We decided we needed to work on the coinfection. I found a dr. that tested things that we never tested before. Dr found : H. Pylori, Epstien Bar, Myco P and Candida Glabrada. He began to treat one at a time. Dr B had already tried Fluconazole just in case it was yeast, but told me there was not really a yeast test. He continued to spiral down for several weeks, so he ruled out yeast. This doctor said that there is a test but if it shows negative, then it may still be positive but not show. However if it showed positive then it is positive. Hunter gave a stool sample that came back highly toxic but resistant to fluconazole! Well, he is on 2 different ant yeast meds and off augmentin (scary, but it build yeast so for now he is off of augmentin). Since treating yeast he is finally begining to go back up hill. We shall see - one infection at a time. I took the advice from the smart people on this forum that said if he is no longer improving from IVIG then there is probably something else going on and I should keep digging. We have a long way to go but I am determined to be in this fight for as long as needed.... But tired! Also the doctors all believe that his immune system got messed up by the 9 immunizations at 12 months & 5 immunizations at 15 months. I need to go ask my pediatrician why he gave the MMR to our son twice just 3 months apart. Because that is another weird test result... Measel & mump antibodies were "off the chart". How did I not know what they were injecting into my child! I asked for the modified shot schedule...... Beating myself up... Just wanted to let you know that we won't be there either, but I bet you find a puzzle piece. Catch your second wind and dive back in! Tell your dh that Steve says hello. Blessings, Linda

I sent dr niclolson an email and he sent one back with 3 papers for me to read that he felt would be pertinent to mycoP and PANDAS. He wrote in the email that he thinks at least 25% of PANDAS cases have co-infections.

Thanks for the PM Tracie. I sent you a responce. Linda

Hello everyone I did K-12 last year for my dd for first grade and I am going to do it again this year also I LOVE IT !!!! her teacher was awesome the program is easy to follow if you need help all you need to do is call or e mail there teacher I just cant say enough goo things about it.. you can set your program up the way you want it I clean houses so I am off on Monday and Tuesday so those are our big days to get alot done I work on Wed,Thursday,Friday so my parents help me out with her math and flash cards and reading so if you work in the day you can do it at night or on the weekends and the best part about it???? I dont need to say anything to anyone about her I do have a 504 just because is she has a flair they know what is going on They send you all the book and everything you need for the year I had school stuff from one end to the other... LOL They have sesions with the teachers on line if you cant make it for some reason it is recored and you can do it later My dd wants to go back to school but I think one more year would be good for her she has been PANDAS free for almost 18 months (knock on wood) 2 ivigs ... and abxs are doing the trick.. hope this post helps Tracie

Granpa had MS, sister has Lupus, other sister won't go find out what is wrong with her....my husband has a great uncle that has S.C.

We are looking into an online program called K-12 and it is an online free public school program. We are both needing to work now to pay for the medical expences of 3 PANS boys. Only the son entering 7th is struggling with the stress of school. We may see if we can hire a retired teacher to work a few hours a week with him and some studies we could do in the evenings after work. We haven't worked out the details by any means yet!!! I may see if grandma can stay with him....?? Maybe this is an option to look into. Good luck, I understand, Linda

We have 3 boys 9, 11, & 12. Severe overnight dysfunction with the oldest boy. After much wasted time before hearing the word PANDAS. Found Dr L....she asked about the other 2 boys. We mentioned things that were very different than each other (one with night terrors and uncharacteristic baby talk and the other with head and vocal tics). She floored me when she said that 70% of her patients were sibblings and that they each present differently. She had us test them all and do cunningham's tests on all 3. Low and behold ....all 3! Oldest is complicated because he went untreated longer & has had several IVIGs but still a work in progress. Other 2 ( knock on wood) are steady with antibiotics alone. Linda

You mentioned Autism. What about seeing Dr. Kenneth Bock? I think he may be concidered a DAN doctor. I think he is in NY. Not sure??? He wrote the book, "Healing the New Childhood Epidemics: Autism, ADHD, Asthma, & Allergies" best wishes! Linda

YES! You are correct!

After dealing with PANDAS for 2 years, I believe we are just realizing HOW BIG a role those #### shots played in this puzzle. I knew in my heart things went "odd" after each appointment. Last week a new Dr. Asked for our shot records because DS 12 antibodies to measels and mumps were off the chart. That is when I realized how many he actually had been given mixed together....9 vaccinations one day after his 1st birthday!!! Then for some reason he was given his MMR booster 3 MONTHS after the 1st (at the 15 month check up). That is when the odd behavior and ear infections began. However, he was my first and everyone said that the bejhavior was from jealosy over the 2nd son we had (2 weeks after those 15 month shots). BUT....I knew.....

Get on a PANDAS/PANS specialists wait list now, so you have a plan when it happens again. Remember also that each time can be longer and more severe. Help is out there, Blessings

Well ds12 was doing pretty well. However the last few IVIGs, things are getting worse with each treatment. Seems like the lower we get the strep antibodies, the higher the myco is going. Ds12 now has terrible urinary frequency and goes into the bathroom every 10 minutes and stays in for 20 min doing rituals. How do we get him back? It's been about 5 weeks of off the chart OCD! We have not seen him this bad since this began 2&1/2 years ago. He is ( 2 years now) on augm XR 1000 x 2 and has tried Biaxin, Cipro, minocy, and now azithro. What to try next? 8 th IVIG is in July, bug not sure since the results are seem to be worse each time..... Here is the question I am afraid to ask.... Has anyone seen their child improve greatly and then become disfunctional after a nice stretch AND been able to get them back again? What if he can't return to us again..... Very scared...

Bump

Awesome! Been following your posts for a long time now, so proud of you!!! Have you heard from ( can't remember exactly her name) began with an "E", teenager from Texas, very smart..... I'll need to look up my old posts for her name, I pray she is doing better as well! Happy Easter, CONGRATULATIONS! Linda

Many also have their kids take an Epson salt bath after swimming in a pool.

Maybe the strep was resistant to that antibiotic or the dose was not high enough. When our son was sick with strep, he began to have movements that were discovered to be Sydenhym's Chorea. Went to high dose Augmentine. Just a thought...

My friend's daughter got alapecia (auto immune) right after the live flu mist.

Dr. B and Dr L said that all of the ear infections when our son was young (tubes and adnoid removal at 16 months) was probably really strep in the inner ear. And the diaper rash that would never go away was probably a strep rash. I googled it and saw pictures that looked just like his rashes. Wish I knew that 11 years ago. So complicated!

Wow that is good to know! We have split the 1000XR in half in the past after calling the pharma. company and they said it would be fine but not intended because of the time release beads (or something like that) were not evenly dispersed...???

Not sure about it being PANDAS, but viruses are being looked at for triggering many things. I read an article that some country was doing research on the improvements of AU kids when given high doses of antibiotics. I'm glad your child is calming however that alone may not confirm PANDAS.... But.....?

Amen to that. You are in the right place.... Put your gloves on, get tough, and get ready for the fight! We are all right behind you. Most of us HAD the opportunity to NOT be here, but doctors that refussed to listen and believe us caused us to MISS that chance for quick remission. (Remission IS possible, just not as easy the longer it goes on.) Welcome and sorry, Linda

Bumping up post