KeithandElizabeth

Hello: First, I am sorry that you are going through such a rough time with healing your son. I would go to My Assistant at the top right section of the screen and you can search for posts on PEX and CAM Kinase II. I feel that these posts can explain everything better than I could. I just wanted to comment that several of the people who have been helped with the high dose Augmentin did not see improvements right away. I know of one person whose child is 95% better right now from a high dose of Augmentin and she saw old symptoms come back and then leave during the first 5 weeks. I just wanted to give you some hope in that category. What doctor are you seeing and what part of the country are you living? Elizabeth

Isabel: How much of the colloidal silver are you using. We actually just started giving it to our son today. Elizabeth

Stephanie: He sounds fantastic!!! I love that he covers everything from abx to IVIG to controlling the yeast, etc....... You must feel so relieved!!! Elizabeth

Mar: Dr. Kovacevic is in Chicago and he has been treating PANDAS for 10 years. His website is webpediatrics.com. Elizabeth

Kathy wanted me to let everyone know that she needs all kits returned to her by November 12th in order for them to run the blood work. They will reopen after the new year. Elizabeth

Wow - I had no idea that night terrors ran in families. And yes, my son always hallucinated in GREEN. He would wake up and say "oh there are those green monsters and mom, you have green lilly pads under your arm." Doesn't this have to be a product of brain inflammation? So, do you think your relatives had any type of brain inflammation? Elizabeth

We have gone through this for the last year.... it is so hard.... My son is slowly progressing in terms of sleep. We had IVIG 7 weeks ago and the sleep issues have been some of the last issues to go away. He used to have horrific hallucinations in the middle of the night that kept him up for hours. Then they turned to just bad dreams and feeling afraid. To give you some hope, our son slept 10 straight hours last night. So, I don't know what is helping the most with our sleep, but this is our regime: He takes his allergy pills at night ( when I stopped giving them to him (because he didn't show sypmtoms of allergies, although his blood work did) he regressed with sleep. He takes 3o mg. of iron supplements during the day. He came back low on iron and our pediatrician said the a deficiency in iron can cause neurological issues and sleep issues. Melatonin to get to sleep (but this doesn't keep him asleep all night) Then we are also doing monthly IVIG's for 6 months It may just take a little more time for these issues to resolve!! Elizabeth

My PANDAS son's strep was eradicated by Clinamycin and he also tested positive for the Epstein Barr virus. His tonsils were huge and full of scars from previous strep infections. They are finally going down after 7 weeks on a prophylactic antibiotic, Augmentin, as well as 2 IVIG treatments. Let us know how his results turn out! Elizabeth

Worried Dad: Oh my gosh, I am sitting here crying reading about the fact that you can hug your son!!!!! I am sooooo happy for your family!! I have been meaning to go to one of our top psychiatrists in town who, I believe, is treating several kids with PANDAS with psch meds and these meds are only mildly helping. I keep thinking about one of the moms who said her son no longer hugs her because of contamination fears. I want this psychiatrist to know about PANDAS and you have just reminded me how important this goal is..... Elizabeth

Faith: I just wanted to say that Dr. K told us during our phone consult that the healing process did not depend on how long our child had PANDAS, but more on whether or not he/she had gone through puberty yet. He said that didn't matter if the child had symptoms for 5 years versus 5 months in terms of healing from IVIG. He also said that he suspected that many children with sudden onset later on (past the age of 7) probably had milder symptoms that went unnoticed in the past. I hope this eases your mind! Elizabeth

My non-PANDAS daughter had very high Cunningham numbers. I still feel that our hospital mixed my children's blood work. But even if they did mix it up, her CAM Kinase II would be 141% instead of 175% like it said. But then her other Cunningham numbers would have been in the normal range. What are your son's other Cunningham numbers? She does not show PANDA symptoms so Dr. Cunningham, Dr. Leckman and Dr. K said not to do anything at this point. I plan to retest her in January. You seem to feel that your son shows some symptoms. To my limited knowledge, I do not think the steroid treatment has any adverse long term consequences. It is used for Asthma as a treatment. Maybe you can consult with Dr. K or Dr. Latimer on this matter. Dr. K will probably respond to your email, even if you are not a patient. Elizabeth

Yes, we went from a 60% improvement to about an 80% improvement after the 2nd IVIG, which was a very small 2 1/2 hour dose. Now, you always have to wonder if Quinn would have improved on his own this much, but in a longer time frame without the second dose. We plan on doing 5 more smaller doses and then hopefully, his immune system will not need any more. We are now able to go out in the world and his day time OCD is almost absent. I don't think he has any more tics, which were our secondary issue anyway. We still have a rough night here and there and I don't understand why he has some setbacks in the middle of the night when he does so well during the day. He still urinates frequently, is a little hyper and sucks on his shirt ALL DAY. But all in all, he is now a normally functioning child, whereas before he was crippled with severe OCD!!! So, I am thrilled that I found this web site along with all the valuable information and support from everyone!! Elizabeth

Hello: Has anyone who has run the immunology blood work come up with high lymphocyte subset panel numbers? My son had 3 of the numbers in the very high range and the immunologist says this means he is fighting something (in our case, it happens to be viruses). I wonder if these numbers would be high if your child was fighting a strep infection as well. I am having a hard time getting good information on the internet and was wondering if anyone else has more knowledge about this type of blood work?? Thanks, Elizabeth

dc mom: I think it will take some time for you to start feeling comfortable. I know that I am just now able to reenter life and we are about 7 weeks post our first IVIG. It is almost as if you body as been in a flight or fight response for so long and now you have to heal yourself as well. mom md: I am right there with you in terms of obsessing over the WHY with PANDAS. I think that we have some great doctors in Dr. Latimer and Dr. K who have been amazing in treating so many kids who could find no treatment elsewhere. Now, I feel that we really need some doctors who have more time to figure out the WHY part of this disease. This is how we can prevent relapses in our children as well as help other children in the future. I think the antibiotics are good in preventing future strep infections, but they do not prevent viral infections which are often a trigger. Elizabeth

Hi Judy: Do you have an upcoming consult with Dr. K? We had ours 3 months ago and I am therefore hesitant to ask him any more questions. But, one question I would ask him is: In his 10 years of experience with treating PANDAS, what percentage of kids who have passed the one year mark and gone off antibiotics have a recurrence? Has anyone ever asked this question to him? Elizabeth

Kari: I feel for you having to deal with this with twins... it is hard enough with one child. And it is really incredible that they both started showing symptoms at the same time!!! How did the IVIG go with both of them? Did they at least get to sit in the same room? Are they on antibiotics? And, what doctor treated them? Elizabeth

Hello mom md: This is exactly what our immunologist said in terms of PANDAS being a symptom versus the problem. I am not as familiar with the subcutaneous IVIG, but my daughter takes IGG in a pill form. I still need to understand the supplement and where the IGG is coming from..... the good news, it seems, is that you should now get this covered by insurance. and you have another line of attack since your son had a recent relapse. How is he doing now with the steroids? Elizabeth

I really feel that they are related. Our son has mild chorea movements and mild tics with severe OCD. Elizabeth

Hi Debbie: I am curious as to Dr. Latimer's thinking about the antibiotics only treatment. Does she just feel that your children have mild PANDA symptoms and they just need to heal naturally by preventing further strep infections and/or does she feel that antibiotics modulate the immune system? And then is the thinking of antibiotics until your 20's based on the premise that adults don't get strep as often. Has she ever addressed what would happen to these children with PANDAS if they do get strep in their 20's? I am guessing that no one really knows the answer to the last question. Thanks, Elizabeth

Eileen: You must feel relieved to be home! Your little girl was so brave!! Did Dr. Latimer give you any guidelines for the healing process post PEX? We will be thinking about you!! Elizabeth

Interesting - I never realized until now that my son is the same. He came up with severe allergies on his blood work and his IGG levels were high, but he does not show signs of allergies - no runny nose, etc.... Elizabeth

Kim: Can you start a new thread? I would love to know more about this! Elizabeth

mommd: I am so very sorry. Remember this is a year of healing and there can be bumps in the road. I am in complete agreement with Dr. Leckman about something not being right with the immune system. I mean, why would this happen to these children if their immune systems were functioning at 100%? The good thing about doing the IVIG next is that is addresses the immune system. We had our insurance cover 6 months of IVIG based on the failed S. Pneumonaie titers. I will check into what code was used with the insurance company. Hopefully, the steroid burst should help you all so much!! Elizabeth

Hi Pixies's dad: Thanks for the update. I think it is so helpful to get the updates and I am so happy that Pixie is doing better. It is interesting to note that Quinn's blood work also showed that he was anemic and was fighting 2 viruses. He also showed a low level of vitamin D, which is related to so many autoimmune issues. We are on prophylactic antibiotics, but they do not help with the viruses. I love getting your tidbits from your chiropractic appointments. I think that chiropractors look at the whole body and I might just follow suit with either a chiropractor or DAN doctor. Good idea!!! Elizabeth

I agree with EAmom about possibly trying Dr. Bouboulis. I often speak with another mother who does not post, but has a child with PANDAS and they are very happy with Dr. Bouboulis. Plus, he is recommended by Dr. Leckman. And, he is in Connecticut, which is probably closer than many of the other doctors treating PANDAS. Elizabeth