KeithandElizabeth

Lisman: Can you remind me as to where you live again? I am just trying to think about doctors for you.... Elizabeth

Basically calcium is anti-inflammatory. We were on the high doses because we in stand by mode with the doctors and needed some help in the short term. We did give 2000 mg. a day to our son every day for almost 3 months. B-12" maintains the health of nerves and other cells. It helps create and maintain the myelin sheath, a protective sheath around nerves that facilitates in the rapid transmission of nerve impulses." I realize as I am writing this that we quit all these supplements after we did IVIG and I am thinking we should start back up to help with our frequent urination issues. Many DAN doctors work with B-12 with their patients with Asthma, Allergies, Autism and Aspergers. https://www.thebodyhealer.com/supplements/s...ofile.asp?id=10 Elizabeth

I am sorry that you all have been through so much! We also had the same night time experiences. Melatonin was a miracle in helping us get our son to sleep, but didn't help with the nightly awakenings and then the up at 4:30 am for the day stuff. Now, we didn't have many rages, but our nutritionist put our son on mega doses of calcium (2,000 mg a day) for anti-inflammatory reasons and I always wondered if this helped with the rages because he did have a few before we started the calcium and then he didn't have them anymore. You never know. He was also taking sublingual B-12 at 5,000 times 8 pills a day! Let us know how you are doing. Elizabeth

Thank you so much for all of your reply's. Susan (Meg's mom) thank you for the OCD ERP therapy tips. I plan to use them!! I feel so much better thinking this is OCD because I had this fear that he was having some sore of major kidney issue from the IVIG. I know this is so rare, but I am definitely having post traumatic stress syndrome. And we are not really "post" yet. I guess that I feel so vulnerable after this intense PANDAS journey and I feel that bad things can and really do happen to these innocent little children. I am just needing to vent. And then with every step back with the healing process, you wonder is the a total relapse and are we starting all over again. So, here we are doing so much better and functioning so well and yet I still feel so scared. I need to work on myself now so that I can be more fully present and begin to really enjoy my family. Elizabeth

Hello: So we are almost 6 1/2 weeks past our first IVIG and my son Quinn is doing great! I would say he is about 75% improved, which is huge for us because we were pretty much stuck in our house because of the severe OCD, etc.... So, OCD was our primary and tics were our secondary. I would say that his OCD and anxiety have improved almost 70 percent and the tics, which were mild, are gone. I have a few questions about the issues we are still having... He still needs to urinate every 4 minutes. I have been timing it! Although yesterday it felt like every minute. Is this OCD? Or can this be an infection? I had him tested for an infection 3 months ago for frequent urination, but it was negative. When he goes to sleep at night, he never gets up to go to the bathroom. So, I am just not sure what to make of this? He is taking Zertec and Sinclaire for allergies. I stopped them 4 days ago when I read some negative information on this web site about these allergy pills. However, when I stopped them, he started waking up scared again in the middle of the night. So I restarted them again and he is sleeping again without waking up. This is our first time using allergy pills. Is there a correlation between allergy pills and sleep? I would prefer not having them on this pills, but the sleep sure is nice. Thanks in advance for any advice!!! Elizabeth

I read his book, Healing the Childhood Epidemics, and was very impressed with what he had to say... I do remember the vitamin A deficiency and eye contact. He also explained how allergies, asthma, autism and aspergers (and he does have an old section on PANDAS) are all related. He looks at the whole body in terms of treating each child. He was my step-mother's doctor during her years of dealing with chronic fatigue. However, he is so popular now with all of his work that he is a fortune to see. My step-mother did email him about how he was treating PANDAS now and he mentioned antibiotics and IVIG. Elizabeth

EAmom: How was your non-PANDAS daughter's other Cunningham blood levels? I did some research and other things, even a recent strep exposure could have contributed to the slightly elevated CAMKinaseII. Our doctor thought even our daughter's GI issues could have contributed to the elevated CAM Kinase. He said "the gut and the brain communicate." Thyroid issues can contribute as well. Elizabeth

Hi Wendy: I can really relate to you because I am always worrying about my 10 1/2 year old daughter, who did have high Cunningham numbers, but really doesn't show typical PANDA symptoms. The problem then becomes that very normal kid things can start to look like PANDAS. Will we ever not be fearful? Anyway, I would suggest maybe doing the Cunningham blood work with your 2 year old. But, as in my case, you must remember that this blood work is still in test mode and nothing definitive can be stated. This is what Dr. Cunningham, Dr. Leckman and Dr. K said to me via email regarding my daughter's blood work. They told me not to do anything with her at this point in time. That said, it does give you more information and perhaps if it is negative, it will give you relief! Elizabeth

Hi Kathy: Can you tell us a little bit about what you are doing with homeopathy? After we finish our one year of antibiotics, I am considering trying some different preventative approaches instead of antibiotics until puberty. I have the more natural healers on my one side telling me about the long term damage these antibiotics will do and then I have this forum with experiences of relapse without antibiotics. I am so conflicted!! So, I would just love to hear about what you are doing instead of antibiotics. Elizabeth

Hi Alex: Yes, I always notice this about my son, who is about 6 weeks post his first IVIG. He is so pale and has such dark circles under his eyes. He does not look as bad as he did pre-IVIG. My son did have low iron and low vitamin D when we drew his blood pre-IVIG. I have read that low iron can cause symptoms of ADHD as well as the pale color and dark circles. Allergies can also cause the dark circles. I will be interested to hear what others have to say... Elizabeth

Yes, thank you Buster! I will need to read your post a few more times to process all of the information. In response to your post as well as Alex's, I keep thinking about the kids who do so well on the 2000 mg. of Augmentin. Do they have a lingering, intracellular strep infection that has not been eradicated? My other question is why do you feel that our particular children get PANDAS? I mean, do you think they have a weakened immune system? Of course that is what our immunologist says, but he is an immunologist! It is interesting that so many of these children have parents with immune issues. Even if you have a genetic tendency towards an illness/disease, wouldn't a strong immune system keep that tendency in check? And then thinking of antibiotics, if we really strengthen our children's immune systems, do you think they will need antibiotics past the 1 year post IVIG mark? Elizabeth

EAMOM Has your daughter had strep post IVIG? If so, how were her symptoms? Elizabeth

Buster: I just have to say thank you for all of your posts! I always learn so much from you and I definitely miss them when you are not around. Elizabeth

Bubbasmom: I would advise to hydrate the morning of IVIG and the evening after. Some doctors recommend zantac (spelling?) for nausea for 2 days prior to IVIG and the day of IVIG. Our son had a headache during the night, which motrin helped. I am so excited for you. Remember that the healing process takes time and you may see two steps forward and then one step back. And you may not notice anything for the first few weeks. Even though you can be intellectually prepared for the one step back, it can still be stressful!! Overall, we have seen amazing results!! Will your son be on antibiotics? Who is doing the IVIG for him? Keep us posted. We will be thinking of you!! Elizabeth

Bubbasmom: Will this be your first IVIG? Elizabeth

Judy: What fantastic news!!!!! I am so happy for your son and your whole family. Keep us posted!!! Elizabeth

Oh - I most likely will not give it to her. I was just doing my homework. Now, for the children who are not vaccinated at all - do they develop antibodies by exposure and would therefore show elevated S. Pneumonaie titers? Elizabeth

We are also on Zyrtec What does anyone recommend for allergies other than Zyrtec? elizabeth

So, why do our kids usually not have typical strep throat symptoms? To me, this shows a problem with your immune system because a healthy immune system will tell you when you are sick with a fever, etc..... So, do our kids not show symptoms because their antibodies are not attacking the strep invasion? Elizabeth

Stephanie: Could this mean that he has strep in his gut as well? I know some people get a stomach ache with strep, but the stomach flu seems a bit different. Elizabeth

I am definitely not vaccinating my PANDAS son again with Prevnar, but I was contemplating vaccinating my non-PANDAS daughter who also failed the S. Pneumonaie vaccines. I thought this was an interesting article about the vaccine. You do have to remember the amount of money some of this drug companies make!!! http://www.vaclib.org/basic/tenpenny/prevn...gi?artid=175870

Hi Shelly: I am sorry for your relapse! Was it a virus or was it another strep infection that induced the relapse? I am under the impression that viruses, which are not prevented with antibiotics, can also cause the exacerbations and/or relapses. I am curious as to whether or not a child who receives a successful IVIG treatment or PEX treatment shows normal symptoms of a strep infection (i.e. sore throat, fever, etc...) after their treatment? What is so hard with so many of our children is that they do not show the typical symptoms of strep and we therefore sometimes miss the opportunity to treat them as fast as we should. I am happy that your second IVIG has helped your daughter...... Keep us posted. Elizabeth

I am also still trying to completely understand all of this.... So, our son failed 13 our to 14 of the S. Pneumo. Failed on our lab sheet by Quest said anything less than a 2. He also passed the IGG levels, but was at the very bottom of the barrel on IG4 and total IGG serum. Then he had 3 high Lymphocytes CD levels. Taking into consideration this blood work as well as his PANDAS symptoms is why our immunologist wanted to do 6 months of IVIG. Now, our daughter also failed 13 our of 14 of the S. Pneumo. She did have one level over a 3. She also passed the IGG levels, but at the bottom of the range for IGG total Serum. She was 833 and the range was 823 to 1900. But she does not show PANDA symptoms and she did not have high Lymphocytes. Hence, our doctor put her on a IGG prescribed supplement and wants her to avoid soy, dairy and wheat (yikes). So, I think that each treatment plan is based on each person individually. It is interesting though how each doctor also does things al little differently. Elizabeth

I am so sorry you are going through so much pain!!! I have felt so many of those same feeling as I called doctor upon doctor and no one could help us! I went to an immunologist to get treatment and because of our failed S. Pneumonaie titers, our insurance is covering 100% percent of the treatment. This may be one reason for you to go to an immunologist - to see if you can get it covered by insurance. Some short term things we did to decrease inflammation was mega doses of calcium (which is anti-inflammatory) My son who is only 50 pounds took 2000 mg. of calcium a day every single day. We also gave him motrin at a prescription dose. He really didn't have any rages while on these daily doses, but it didn't stop his other PANDA symptoms. We are all here if you need to vent some more!!! Elizabeth

Hello Nojo: We are homeschooling our son and it is much easier than I envisioned. Please feel free to PM me at any time. I never really fully understood the chorea and I just asked my son to stand with his hands in front and he does seem to play the piano. Wow!!! We have had 2 IVIG's and we are so amazed at the difference in our child!!! Elizabeth