qannie47

Prayers for your little one.

Tu4four, You daughter, her behavior, seems a lot like my other ds (non-pandas child), who has sensory issues....This is what I have learned, and believe, these poor children, whom have come into this world with other challenges, can unfortunately fall into a very backward, negative way, in how they relate to the world...with both my children, one pandas one sensory, I use a behavior mod program along with addressing the physical issues. It has helped immensely. I highly recommend Howard Glaser, "Transforming the Difficult Child, The Nurtured Heart Approach". It works, and help the entire situation. Even when my pandas child is flaring...He has a Cd that you can rent from the Library. I found for myself, when I had a better understanding of how life/inherent dispositions/physical challenges like pandas and sensory issues can effect my children's emotional status and how they view the world, I had a much better ability to deal with issues like lying, stealing, anger.....this program works....and is life changing.

Sorry to hear all of this!! I have terrible allergies and sinus issues...I have a constant drip that inflames my throat. The only thing that helps is the Neti-pod. I use it three times a day, buy nursery water, and it can clear up my issues 100%. I have avoided the use of antibiotics for the last two years with this approach...

Otksma, just met with Dr. K. First, he said that after IVIG, it would be unusual for other illnesses to trip of Pandas in a major way, although, to be safe, he would still use higher dose of abx when he got sick with anything signifigant. Two, he does not actually feel that abx is enough to prevent strep, and if he gets it and if we are not vigilent, it could indeed trip off a bigger Pandas episode....so the trick is to catch it asap. Third, the idea of abx is used not only to ward off infections, but abx also is an anti-inflammatory as well so it could be considered a part of the healing process. Three, gut issues...my ds takes a probiotic daily and will continue, so I am not worried about gut issues (not at the same time of day as abx). Remember, the bigger picture of the IVIG is to MATURE up a glitch immune system...that takes time, hence the 1 to 2 years of antibiotics and vigilance for future infections...Fourth, these days I am happy if I remember to close the cabinet doors in my kitchen, but I will try and remember and reference some material for you...The collaborative study that I talked about was from the NIMH website. Go there, it is a study done on I believe 50 kids who were treated within the first year of 1st episode with IVIG and tonsillectomy...I am getting my ds's yanked out in December....he can eat all the ice cream he wants...

So it sounds like this episode was the qualifying episode. The BIG one that gets everyone's attention...Typical. So, I would consider this episode 1. What was he sick with? My ds, with his first episode, (the BIG one that got our attention) tested positive for Strep for 6 weeks straight after we figured it out. He remained on antibiotics the entire time, (with the exception of off a few days so we could test). It took that many weeks of antibiotics to clear out the strep...Hence....when we finally accomplished that, ALL THE SYMPTOMS WENT AWAY PRETTY MUCH OVER NIGHT. He was then completely normal for about four months. After that, any form of Illness set him off. I noticed the more severe the illness, and how long he was sick, the longer the episode. With each concurrent episode though, the abx failed to work. I don't want to play doc, but if I had it to do all over again, I would have RUSHED to IVIG. The newest study is testing the idea of how much more effective Ivig is if done after first episode, and before another one takes place. Ivig is considered safe. No long term repercussions result from it. In my opinion, you have nothing to lose, and everything to gain...How is he doing now? Don't wait for another episode even if he gets better with burst.............

What number episode is this? I noticed by the fourth episode, my ds no longer showed great improvements. The research suggest this as well. According to Dr. K., when my son no longer responded well to abx it was time for IVIG. What did Dr. K. say about this? Also, how long was he sick with the last infection that tripped off recent episode? My son had tonsillitis for 6 weeks, and it took months to come out of that episode. I think it was because his brain took the hit for a long time, and that is why the episode lasted so long.

Thank you for thinking to share your successful outcome with us. For me personally, when I hear positive outcomes such as yours, it transcends hope...

good to know about advil/alleve.....thanks T.Anna

read your bio....did a linear timeline in my head as I read....you have experienced very little relief in the grand scheme of what is plaguing you. What did jump out for sure was the correlation between wheat and candida. What did they say about anti-streptodornase b which was abnormal? What about micro-plasma infection? Do you take probiotics? Others might not agree, but my understanding of Pandas is that one usually experiences first big episode as a child. Can your parents recall any problems at all in relation to chronic strep issues? This does not strike me as Pandas, (go to webpediatricsmd for more info) but that does not mean that this is not on the spectrum of an auto-immune induced mental health issue. They are finding more and more about the e relationship between bacterial infections/gut issues > autoimmune = mental health problems. However, I don't think I need to tell you this, as you seem very well informed. Also, when trying a new approach to treatment is it possible that you are abandoning something too quickly when it seems to stop working? Sometimes, as with my son, their is a wax/waning thru the course of a healing period.....months......two steps forward, one step back kind of thing with hopefully a light at the and of the tunnel. I only add this thought cause it is clear that you have been thru so much, your mind and body, I can see how that alone would make it difficult to pinpoint...

Dr K opted not to do steroid burst with my ds...not sure why. We had it done at Oakbrook Terrace with Dr K. I too thought Ibu would be safe on liver, but I guess when I think about it still is a med that would filter thru the liver.....

Just said a prayer for you....depression is horrible...have had some of that in my past...so I know....I am so sorry....be kind to yourself. Do something that brings you joy, write a song...surround yourself with those who can bring you compassion and strength.

My ds when his episodes are at there worst, we will see the repetitive movements. They ranged from the head to toe "hula-hoop" movement, spinning with his arms stretched out open wide, lots of falling getting back up and starting over again. A popular one for him was running up the same three steps over and over again until he would fall backward, off the stairs, get back up and do it again. One time I watched him do this for over an hour straight. He was so exhausted when he was done he looked like a zombie. I actually recorded part of it. repetitive cartwheels and handstands show up from time to time. This is the typical episodic stuff with my ds. He is in Karate. The amazing thing was that even when in an episode, he was an excellent student. I think the movements are similar and served as a relief for him so he was able to pull himself together enough to get through the class....then explode when he got home.

Good luck Lauren!

Thank you for all the warm responses....q

As of week 10, my ds is still clear of any Pandas symptoms. Dr. K is thrilled. Follow up will include remaining on antibiotics and strong vigilance for a recurring strep infection. He said that the IVIG would not hold up to strep being in his body for any great length of time and could trip off an episode in the next couple of years. He said that he should be strong enough to fight off other forms of infections without recurring Pandas, however, we would still treat other infections with full dose antibiotics. We will remove his tonsils in the winter. He said that I should also see a big change in academics and social maturity as well. He said these changes should be witnessed over the next several months. Interestingly, I asked about using Ibuprophren with minor flairs, and he was adamant about not using them cause he had a concern about Liver damage. One thing to also note, I mentioned that I was giving probiotics at the same time as abx, and he said not too. He said that given at the same time, the probiotics would affect the absorption of the abx and to space it out during the day. I also asked him about the Turkey study, and he basically said that they have already found many other genetic mutations and that he was not all that excited about this recent one. He felt that the use of IVIG will remain the proper course of treatment for Pandas in the future.

Hi can you share with us all what homeopathic regime you children were on? That is what I just love about this forum...the sharing of information....

wow...must be a transcendent, empathetic, vibration making its way thru the universe...This Thursday and Friday I experienced a weird low with the whole Dam Pandas thing. Despite how well my ds is doing (yes God, I am grateful), but human. I just ended up in this I AM JUST SICK AND TIRED OF WORRYING, RESEARCHING, HOPEFUL THINKING, WORRYING SOME MORE.....and yes aggravated with my also ungrateful, spouse whom is very lucky to be married to a GET THE JOB DONE, ILL FIGURE IT OUT, WHY DONT YOU JUST GO TAKE A GOLF DAY, CONTROL FREAK such as me....So I cried a good part of the day yesterday and was worried that a depression was coming over me....UGH....but thankfully, I woke up feeling a little more like myself today. Packed up the kids and spouse and spent the day at the beach, ate too much antipasto salad, pizza and icecream. Definitely feel better. BTW...My Ds is still on a roll with doing well after IVIG. IT BETTER NOT COME BACK....okay...I am not completely back to my pleasant old self yet. But I always look forward to checking in with my ACN cyber friends....you all help to make coping with Pandas a little more tolerable.....Thanks

Yeah, read the whole thing....it was a bit like giving birth....for a laywoman, such as myself, I was excited to take away the understanding that they have found a gene mutation that can be linked to Pandas....86.5% in Pandas group and none in the control group.....just think what that could mean!!! A blood test down the road that proves that we are not crazy!!! Insurance coverage!!!!

WOW!!!!!!!!!!!!

What I have researched is that they found that no chance of infections can be passed....just like drinking milk...disease dont pass thru the barrier....

I am thinking of adding this to my ds diet....going to talk to doc first and do more research....anybody ever tried this?

Thanks everyone!!! Very clear and helpful. My ds will be on abx for the next 1 to 2 years. EAmom: Your explanation regarding exacerbations after 2nd episode fit my ds to a TEE!!! The first two episodes, he responded beautifully....3rd & 4th....ugh....Hopefully the recent IVIG has truly done it's magic. I just wish I knew this info out of the box, as I would have insisted on the IVIG after 2nd episode. I understand that Doc was being careful in diagnosis, he wanted to make sure my ds was truly Pandas. However..........

While I read through all of your posts, I see that I am way behind in regards to certain knowledge in regards to Pandas. So question...I have understood that abx is used as a treatment to ridding of an infection, then the symptoms go away..but as I read, it appears that many of you feel that abx controls symptoms as well....can somebody please explain..I get the idea of abx, which my ds is on to prevent and treat an active, but I don't get the implication of why they would work to control symptoms...Unless they shut down the immune system????

I just went thru the same ordeal....I recommend at this point to stop using the word Pandas with your insurance company. Because I pursued ivig for Pandas, it is now in my child's insurance profile and I am concerned that other treatments are now going to be questioned...One thing that I heard about, but did not pursue, is that the government has a program in place that will pay for "experimental treatment", not covered by insurance. I suggest you start researching this on the internet or even calling your congress man. Ask anybody whom's work might be affiliated with contacts with government that you know. I know that the University of Chicago has a department that deals directly with the CDC. They are involved with research such as Aides, as well as other infectious diseases...etiology, treatment....My point, all their work is done thru government grants...so they may have a go to person to contact who can lead you to this program...if it still exists...

Has she been tested for celiac disease?