KeithandElizabeth

I just want to ditto what bubbasmom had to say.... We also found a pediatric oncologist/hematologist to treat us based on Dr. K's recommendations. They usually either have their own in office IVIG rooms or easy access to IVIG since they often administer IVIG for their pediatric cancer patients. Dr. K was amazing in terms of corresponding with the doctor in terms of dosage level and antibiotics. We did do the phone consult with Dr. K prior to finding a local doctor. I then got on the phone and called nearby immunologists and neurologists and hematologists/oncologists to find someone willing to work with us. Good Luck and keep us updated on how you are doing. Elizabeth

Hi Judy: My son, overall, is doing so much better. He had a relapse last week, which felt devastating, but he is stepping forward again. He does seem to be affected when he is around other people with viruses (like a cold or flu) even though he does not seem to get those viruses. We have a high deductible, but then were able to get the IVIG's covered 100%. I believe our doctor used the "generic autoimmune disease code". Feel free to PM me with any questions. Elizabeth

Hello Sam I am so happy that Shae is doing well!!!!! Like Shae, our son is receiving monthly IVIG based on the failed S. Pneumonaie titers as well as his clinical diagnosis of PANDAS. He is only doing a series of 6 IVIG's though. He did not fail any of the IGG classes, although he was on the low side of normal for total IGG. It must be so rewarding to have your child thriving and happy. Elizabeth

Hi Brooke: How old is your son again? I am curious as to the dosage of IVIG you did with Dr. Latimer? How much improvement have you seen overall? And what is your main symptom? I am asking all these questions because I am wondering at what point you can say the healing stage has ended? Does anyone know this with IVIG? I believe Dr. K says it takes a year to fully heal, is this what Dr. L says? Elizabeth

What is the treatment for this if the test comes back abnormal? Elizabeth

Falling Apart: Didn't you mention that you had 31 great days in between IVIG's? I am just wondering if you may need monthly IVIG's? My thoughts are with you...... This is so hard for the whole family!! Elizabeth

Hi Eileen: I am not as familiar with the healing process post PEX, but I assume it may have an up and down cycle like IVIG. My son has been about 90% better post his first IVIG 12 weeks ago and then had a big flare last weekend. I think he was hanging around several family members with colds and even though he didn't seem sick, he reacted. Did Dr. L ever say that post PEX can be bumpy? Advil has really helped us and he seems to be recuperating. We also increased his abx for 10 days in case he was somehow exposed to strep. I know it is hard to see them doing so well and then see a little relapse. Again, I think the process of healing the brain can take some time. Elizabeth

Wendy: I just want you to know that I am thinking about you! I still remember when I received the Cunningham numbers for my "non PANDAS" daughter followed by the adrenalin rush that shot through my body and then the complete panic set just set in permanently. But now you have a great doctor and your child is so young, which I think is good in terms of treatment. Let us know what Dr. K says to you. We will be thinking about you. Elizabeth

Hello: Another consideration may be that the higher dose Augmentin is causing a "flipping back of the pages." I speak with another mother who did the high dose augmentin and she saw an increase in symptoms for the first 3 weeks and then they began to slowly subside beginning at week 3. Just a thought! Elizabeth

Faith: I think about the question you pose every single day. Why did the "Saving Sammy" dose of 2000 mg. of Augmentin help Sammy. Was it a deep rooted or intracellular strep that needed the high dose antibiotics the issue or was it the anti-inflammatory properties of the antibiotics that helped his possible auto-immune disease? And the answer may be different for every child. Sammy did have elevated strep and I believe so does Worried Dad's son. So, maybe that is why they needed the high dose antibiotics. In our case, strep was the initial trigger, but any virus, lack of sleep or too much sugar can create a little exacerbation. Basically, anything that can tax the immune system can produce a little flare of symptoms. And our son's ASO levels did not always match his symptoms. Just thinking out loud. Elizabeth

Eileen: What wonderful news!!!!!!!! I am so happy for your daughter and your whole family! Elizabeth

DeAnn and Ellen: I just want to say that I really feel for both of your situations. As I watched my 7 year old son lose his mind right in front of eyes, I always thought how much harder it would be if he were older. So, my thoughts are really with both of you! Ellen, I am so happy you are seeing progress. What a journey you have been on! I wish you more success with your further treatments. DeAnn, I think that once you can convince your son, Dr. K is willing to work in so many different directions to help you. Whether it be high dose antibiotics or IVIG or multiple IVIG's, I think you are working with a great doctor. Elizabeth

I believe his name is Dr. Bouboulis and he has one office in Darien, CT and then another office somewhere else. I know coco and Momofgirls sees him. He sounds great and I wish we could see him as well, but he is way to far for us. Elizabeth

EAmom Well, right now my son is thriving and I will have to trust the doctors I am working with. I cannot get him full dose antibiotics, ######, I could barely get him prophylactic antibiotics. I was put on full dose antibiotics as a 9 month old for 6 weeks and they saved my life. However, I developed severe yeast issues that created their own set of issues that lead to more antibiotics throughout my childhood. I am just now getting my own immune system back in shape with mega doses of probiotics. My children also have yeast issues so I need to be cautious with antibiotics. I am following Dr. K's antibiotic protocol and he has treated this illness for over 10 years. If we were not having the success with our treatment, then I would consider the full doses of antibiotics. I understand this helped Worried Dad and I am thrilled for him. Our doctor recommended the 6 months of IVIG, this was not something I decided to do. It is hard to find local doctors who understand PANDAS and are willing to treat your child. I just feel lucky that I found one. Elizabeth

EAMom: We are following Dr. K's protocol for the 250 mg. of daily Augmentin. Isn't this the right dose per his protocol? Elizabeth

Hello: This is one topic that will bring so many different responses, depending on the doctor treating as well as the symptoms of the child. The immunologists tend to shy away from the higher dose antibiotics on a long term basis because they feel that the purpose of the IVIG is to fight the infection and reboot the immune system. Our son is 7 years old and weighs 50 pounds. He is on 250 mg. of prophylactic Augmentin that he started 2 months ago during his first IVIG. He never did the full dose of antibiotics. We live in Boulder, Colorado We were never on antibiotics before IVIG, except for the short term doses to treat strep. We have done 3 IVIG's. Our first IVIG was 2 months ago. These are smaller dose IVIG's. We feel that our son is about 90% better at this point. Even his tonsils, which have always been HUGE are now small. Interesting - because the doctors always said that those were just the tonsils he was born with... Our long term plan is to do 3 more IVIG's and then to continue the prophylactic antibiotics until the one year mark and then continue with more natural therapies like the homeopathic remedies that several people have used on this forum. Some of our doctors feel that once the immune system is functioning properly, then it can respond to strep and other bacterias and viruses more appropriately. Our doctor feels strongly that PANDAS is a symptoms of an immature/or weak immune system and that our focus should be on the immune system. I am having to push him for the prophylactic antibiotics for one year. In terms of the augmentin, we have not tried any other antibiotics prophylactically and since our son is doing amazing right now, we plan to stay put with the 250 mg. a day. Elizabeth

mom md: My kids often get the red itchy bum whenever they eat too much sugar. It can definitely be a yeast issue. This may sound gross, but sometimes we put some plain yogurt on their bums when they get in bed and it seems to really help. Elizabeth

The doctor can easily swab her nose to test for strep. Our doctor did that with our son. How wonderful that Pixie is doing so much better. Sorry everyone got so sick. But what great news that you did not see any exacerbations. Elizabeth

Ellie Did you treat this type of strep with a different type of antibiotic? If so, which type? Wow, how did they find strep C - with a regular 72 hour culture? Elizabeth

As you probably recall Kim, my 10 year old daughter has high CAM Kinase II, but she does not display symptoms of PANDAS. She has had strep before and a history of GI issues. Our immunologists felt that the GI issues could have caused the elevated CAM Kinase and that the gut and the brain are always communicating. I feel that the Cunningham test may be potentially useful for those parents who are unsure as to whether or not their child has Tourettes versus PANDAS. Dr. Cunningham states that the average Cam Kinase II for a Tourette's only person is 88, which is lower than the average person in general. So, for those who want to differentiate between the two, the Cunningham blood work may be very useful. Elizabeth

Hello: Okay, I am jumping in with my two cents. My son also has PANDAS and IVIG has done wonders for us. It has brought our son back to us!!! We are doing a year of prophylactic antibiotics and then I hope that the natural remedies we are using will help my son's immune system to react more appropriately to strep as well as other viruses on its own. I often wonder how many people with OCD and Tourette's actually have PANDAS. On the other hand, I believe that strep as well as other bacteria and viruses are all around us and if we have a super healthy gut and immune system, then we can live in harmony with strep. This is what many nutritionists and homeopathic doctors believe. Strep is not the only trigger for PANDAS, and hence, full dose antibiotics until adulthood will not prevent further PANDAS exacerbations. I agree with Caryn about the acidity/alkaline level of the body and how a poor gut health can lead to nutrient deficiencies. Our PANDA son has horrific acidic PH levels. We are currently working with a nutritionist to alkalize his PH. And yes, if you research PH levels, there is so much information about how an acidic environment breeds disease! And especially autoimmune diseases. I feel that the antibiotics and IVIG are a short term help for those of us who were/are paralyzed by PANDAS. Ultimately, I feel like the goal for us would be to strengthen our immune systems to the point where they can fight off invasions on their own. So, I agree with all of you in a sense. Elizabeth

Good news..... at least she seems willing to learn and will work with you. Did she say how long you would need to do the IVIG? Elizabeth

Hi Melanie: I think that many doctors are using an unknown autoimmune diagnosis or an immune deficiency diagnosis instead of a PANDAS diagnosis to get insurance to cover the cost. PANDAS is just too controversial right now for most insurance companies to cover the cost. Ask if they can change the code used. Every doctor has a different idea as to why these children get this illness, but many immunologists say something is not quite right with the immune system and whenever your body attacks its own self, then this is usually considered autoimmune - hence, the generic autoimmune diagnosis. This is what our doctors used to get insurance to cover our IVIG's. Good Luck!!!!! Elizabeth

Hi Char: We also did the 5 day steroid bust and my son got very sick. We were doing the steroid burst as a test for IVIG instead of as a treatment plan in the way that Dr. L recommends. It was not as successful for us because I believe the sickness elevated the PANDAS symptoms. Hopefully, Dr. Latimer will email you back. Even though the steroid burst was not as successful for us, IVIG has been extremely successful. Have you tried working with any immunologists in your area? I ask because they are one of the few types of doctors who can offer IVIG locally. Elizabeth

It seems that Augmentin in Saving Sammy doses seems to have curative powers for many children. Does Zith in such high doses have the same curative powers? Elizabeth