cara615

I am new to all of this but we do have a confirmed (as confrimed as it can be) case of PANDAS. We did not see marked improvement on amoxi until day 8 or 9 like like joybop said. Maybe a bit sooner but it was hard to tell. The improvement was SO VERY SLIGHT and VERY SLOW from day to day. There is nothing dramatic about the recovery. Its baby steps in our experience. Hang in there and do you best to try to get more abx in order to demonstrate a positive effect in your child. i think if you can prove they are working then the doctor may be more inclined to prescribe a longer regimen.

Our holistic MD is NOT on board with long term abx. Looks like I will be going to another PANDAS friendly doctor in the meantime to get my child what he needs. Her suggestions were CBT and possibly IVIG. i don't want to rush into IVIG but seriously CBT??? My son's only symptoms are tics and CBT won't do a thing for him as he is only 5 almost 6. Habit reversal therapy for tics only really helps when the child is more able to control the tics. My son is not. And also, since this is not genetic TS and there is a cause for this, why not treat the cause?? I do understand that the abx are just preventing the infection, but I would rather him be protected and NOT have a flair then to manage a flair with CBT?? Am i right here? Anyway, we have 30 days of azith (full stregth) and I will be taking my son to another doctor that agrees with my game plan for his long term treatment. I thought the anxiety would go away but its still here (my anxiety) lol. As for his tics - we are on day 16 of abx and his tics are still here. They are very quiet but kind of frequent still. No one one really notice unless they were told to look for them. Its wierd some days its more motors (head and sholder shrugs) and some days its more vocals (throat clearing, sucking air in). Nothing is consistent with his tics. I know that he is healing because of the inconsistency of it all. A woman that literally lives down the block from me and has a son with PANDAS said that full recovery didn't happed for her son until 10-12 weeks on abx. So i am holding tight to that estimate and trudging through . Can't wait for the conference in Feb!!

UPDATE: First of all thank you all for your words of encouragement. They are helping me through the toughest part. My son's blood work came back yesterday and he had a positive ASO and anti dNase-B of over 700 (normal is considered to be less than 300). Dr. is convinced its PANDAS. We are speaking tonight to talk about the game plan going forward. We are almost done with the keflex and I have about 4 days left of the amoxi to add on but then we will need to talk about prophylactic abx or maybe some azith for another 10 days before we go on prophylactic. Not sure. Each day he continues to improve. Its SO SLOW!!!! An dhe will have moments where he will tic for about 20 minutes and then it will stop. His tics are getting quieter thought and less noticable. As time goes on they are getting less frequent too. No OCD or ADHD behaviors. I feel like I have so much to be thankful for this year. I know we have a long road a ahead but at least we know whats causing this and the steps we can take to manage it. I feel a little more in control than I was before.

Need words of encouragement. How is the course of symptoms while on abx? I have seen my son go from severe ticcing to drastically reduced in just 7 days on abx. Today his tics are slightly increased again. they are very quiet so you can't tell he is ticcing but I know! And I feel that we have plateaued today. Is this the way the symptoms resolve? Is it not a steady decline but more of a bumpy one? I am also suspecting yeast so I added some grapefruit seed extract to his regimen about 2 hours before i give him the abx. Maybe i am seeing die off from the yeast? Its so hard to tell and I was convinced it was PANDAS because of the drastic improvement I saw in 7 days. We are only on day 9 of abx I know its probably too soon to tell. I am just not handling things well today. I am not mentally OK.

This is AMAZING information. LLM you lay it out so easily and i do plan on getting my son the 23andme test. i will refer to this post when I get the results. THANK YOU!

Epsom salt baths help us at tons! Calms everyone down. That's magnesium too .

Day 9 on abx and my son's tics are almost completely gone. No OCD or ADHD behaviors either. We haven't had him this good since before he was diagnosed. I don't think I can be more convinced that he has PANDAS.

We tried Tic tamer. it did not work for us. It made my son's tics worse in fact. Not sure why. Have you addressed food intolerances and yeast with your child? i know that when I killed yeast, my son's tics reduced significantly. Also, when you remove foods that may be causing inflammation, that also reduced tics. When I removed gluten/dairy and corn we saw another very significant reduction in tics.

My son had tics and some mild OCD/ADHD long before he had what I think is a PANDAS flare (around 3.5 years old and he is now almost 6). My son also has food intolerances and inflammation caused by such food intolerances. He also had yeast and poor methylation. i think that these underlying issues caused the initial onset of the behaviors and tics but the true PANDAS episode did not show itself until this past May. We did not test for STREP in May, instead i worked on healing his gut, thinking he has Tourettes/ODC and ADHD. I would not put him on meds and went completely holistic. i was able to resolve the OCD and ADHD and get his tics down to 95% just through diet and supps alone. Then in Nov he flared out of nowehere. Within 2 weeks all his tics were back and they were constant. On a whim, i decided to get a STREP test and BAM! it was positive. He has been on amoxi and now cephalexin with improvement day over day. Are we convinced its PANDAS? 80% convinced. Our doctor tested his titres and we get results tomorrow or Monday. She wants to see elevated titres, not sure why because we had a + STREP test and he is improving on abx! If she won't give us what we need, then we have other doctors that will. The thing is with prophylactic abx or even full dose abx, you need to maintain the gut flora and continue to keep the yeast at bay so a strong probiotic and natural antifungal are a must. We give Ther-Biotic by Klaire Labs and do grapefruitseed extract to kill yeast. i would not stop until I found a doctor that agreed with me and was willing to give abx a try. Millions of kids across the globe take abx every day of their lives to keep Rheumatic fever at bay. These kids do just fine. If it keeps the kid functioning in life then to me, its worth it.

Thank you qannie47 - I know, big picture, big picture. I am so mired down in the minutia right now, its actually aging me. I look about 5 years older than I did last year. Its very sad. But the good news is that my son is improving. I was all scared yesterday because I saw an increase in tics after the new abx was given but when I spoke to his teacher she told me he was MUCH better in school than the day before. So its been a slow and steady improvement and it keeps on going. We should have blood tests for titres back by Friday (Mon the latest) and we will know more then. Our regular pediatrician is willing to prescribe more abx if we feel we need it! How wonderful is that? I am trying to get her to go to the conference here in Atlanta in Feb. I signed up for the conference with the woman I met the other day who has a PANDAS son in 5th grade and a son in my son's class. We are going to go together. I finally feel like there is HOPE for us.

One more thing I want to comment on is that I'm assuming all these specialists would be extremely expensive over time. I know we have spent over $5K in just 6 months trying to figure out my son's allergies, methylation, gut dybiosis, etc. So for a parent that is low income, this could be an incredibly difficult journey.

This thread is amazing because it prompted me to ask my good friend how her daughter (who is has ASD) acts when she has a fever. My friend told me that her daughter is extremely verbal and "present" when she runs a fever. This is incredible. She is now going to explore the possibility of an immune system dysfunction in her 5 year old instead of just sitting back with the ASD dx and getting her services. I think the services are great and needed but maybe she can help her daughter even MORE by getting to the root of the problem???

We switched my son to the cephalexin last night (from the amoxi) and I saw a slight increase in tics. Could it be that its a stronger abx and it killing off the STREP more effectively thus an increase in tics? I don't want to freak out because slowly but surely he was improving on the amoxi. Now we switch to something stronger and we take a little step back. Any thoughts?

The school is pretty new but I will check. Interesting about mold. My son takes gymnastics and they had a water leak one week in their HVAC and the place smelled moldy. While there, my son started ticcing but once we left, the tics resolved.

I got a note home in my son's folder today from the school nurse. She told me that the mom of another PANDAS kid wants to talk to me. She recently went to the conference up north and has tons of info to share. She also has a child in my son's class!!! I was overcome with emotion as I am sure you could imagine. Its her middle child that has PANDAS and is being treated. I called her and we were on the phone for over an hour! She lives around the block. Really, I can't even believe it. I feel so blessed.

The changes we made with diet are meant to be long term. Gut healing takes a long time and immediate results do not always show themselves. For us we removed gluten first. No improvement, then corn with slight improvement in ADHD behaviors. Then we killed yeast and got some more improvement but it wasn't lasting. Then we removed dairy and over night we saw dramatic improvement. OCD,ADHD and anxiety all gone. The tics that remained were barely even detectable. It stayed that way for more than 2 months until we got a positive STREP test. So whether its PANDAS or genetic TS, I do believe that diet has a lot to do with it because of the gut/brain connection. Heal the gut and the neuro symptoms will work themselves out. As for methylation, we did a very expensive blood test called a NutraEval with our Holistic MD. It tested the levels of vitamins, minerals, amino acids, and many other things inside the blood. Based on the findings they can tell that my son had poor methylation and poor detoxification. That is why we supplement with the methyl B complex vitamins. I hope this helps and even though we are now on antibiotics and exploring a PANDAS dx, we are still adhering strictly to our new clean diet and supplementing with the vitamins and amino acids that he needs.

Just want opinions here. If my son's symptoms get better on the antibiotics can I be sure its PANDAS?

We've gotten a niacin flush from too much. Best to go slow.

Dr. Bock is in Rhinebeck NY right? My best friend takes her son to see him!

I switching to Ther-biotic detox - I like 50 bill better than 25 bill anyway

Interesting point! if it doesn't matter then I will do it that way!

I emailed Dr. Swedo and one of her clinicians, Paul Grant emailed me back. I then called him to chat with him and we spoke for a bit. He agrees that what i am dealing with very well could be PANDAS. But according to him and the NIH there is no definitive test and its only trial and error with the abx. He thinks that if we see improvement with the abx that i should get my son on prophylactic abx. Paul was willing to talk to my doctor if she disagrees. I thought that was very nice of him and promised I would follow up with him in 20 days after i finish the amoxi and cephalexin. My son's teacher has been keeping an eye on his tics. She said they were more frequent on Friday but still consistent throughout the day today. right now his tic of choice is a loud "eh". Its like fingernails on a chalkboard for me! But I think we may be heading in the right direction. Very very small improvements as the days go on.

I just found a "leading PANDAS specialist" according to the PANDAS Network website, here in Atlanta. i called and spoke with his nurse. i told her my story. She says it sounds completely like PANDAS. I felt such relief speaking with her. My anxiety levels have been through the roof lately. If our current holistic MD does not get on board with a PANDAS dx then I am going to see this new doctor. He is a psychiatrist (which is odd?) but is very up to date and has a lot of success treating PANDAS here in Atlanta. I would prefer to stick with the holistic MD but if she is going to get all hung up on rising titres then I may need to go elsewhere. I don't even understand the point of checking titres when you have a positive STREP test in hand, right?

I would love to see the article. It is my impression that PANDAS kids may or may not be on the autism spectrum but simply having PANDAS does not put you on the spectrum. I think there is belief that both disorders are immune related rather than genetic. My son is not on the ASD spectrum but we think he may have PANDAS because of the tic disorder that has become exacerbated due to a STREP infection.

Thank you!! I will look into this today. I love the sound of the name. We have battled yeast here and I have a feeling will continue to do so if my son has to stay inabx for a long period of time.