KeithandElizabeth

I would recommend a phone consult with Dr. K. He seems very knowledgeable about anxiety and its relation to PANDAS. We are making our appointment today. Elizabeth

Hi Brooke: I ended up treating the dog, even though the test came back negative. I would advise to just treat....it is 5 days of amoxicillan. We are in the process of doing the ASO titers on the rest of our family because my daughter seems to get stomach aches with strep and she has stomach aches right now and our son who has been healing nicely with IVIG is a little off. We were in the infusion clinic getting my son's monthly IVIG yesterday and a woman was standing outside our room with her 2 daughters and she ways saying that they both "had raging cases of strep throat." I had a momentary panic attack!! I say why not test everyone with the ASO titers? Elizabeth

dcmom: I am going thru similar things with my 11 year old daughter. I plan to consult with Dr. K. I did hear from another parent that the stomach issues/adolescent variant form of PANDAS was easier to treat. I will let you know how my consult goes....... Elizabeth

FallingApart: Have you had the rest of your family's ASO titers checked? After reading LaurenJohnson's mom's post, I am going to have our whole family check their ASO titers. Elizabeth

John, Please do let us know how Dr. K wants to treat your older son since we have an 11 year old daughter who we are also concerned about...... I am sorry that you are having to go through this.... I know it is so painful!!!! Elizabeth

My PANDAS son had low Vitamin D as well. I agree with another reply in that you should get an immunological work up, including IGG levels and T and B cell flow. Elizabeth

Are you talking about the ASO titers? I am having my family as well as my parents get their ASO blood titers as well@@ I sometimes don't know if I am rational and on top of things or if I am becoming half mad!!! Elizabeth

My son's PANDAS journey began with a staph infection on his foot! If I had known at the time where we would be today, I would have done higher doses and longer term antibiotics. Elizabeth

Both of my children have had yeast issues since they were born!! And I mean everything from severe thrush to vaginal and anal yeast. I have been wondering if my daughter has candida/fungus issues similar to what Michael from Tampa is saying. Elizabeth

Peglem: I am also surprised that your immunologist is not treating your daughter for the low IGG's? Some children are treated for much longer periods of time based on low IGG's. And your insurance should cover it!!! Elizabeth

Michael: I am so sorry that you have had such painful time while trying to heal your son. My thoughts are with you!!!!! Elizabeth

We also did the Lymphocyte Subset Panel, which consists of the Absolute Lymphocytes CD19, CD3, CD4, CD8, etc..... This is different than the lymphocytes under the CBC panel. Elizabeth

This has definitely been our experience. Our son has had several relapses since IVIG and each relapse has occurred after he was exposed to someone else who had a cold or the flu. Interestingly, he did not seem to get sick himself, but his PANDAS symptoms increased. Elizabeth

Dr. K once suggested that I have my daughter's anal area swabbed for strep. I would recommend doing that with your daughter tomorrow just to be sure.... Elizabeth

My son also had a low Ferritin level and one of our doctors suggested that our son's low blood levels in this area as well as other areas was the result of "PANDAS" and the infection that his body had been fighting so long. We did use Melatonin to help him fall asleep, but it did not prevent the nightly nightmares and 4:00 am rising for the day. His sleep is much better post IVIG, although during our bumpy healing periods, he will sometimes regress in this area. Elizabeth

Hello: My son is getting monthly IVIG and is really improving all the way around. Even his shirt sucking habit is going away. He is on prophylactic antibiotics, but we see a nutritionist who gives him 300 billion units of probiotics a day to overcompensate for the loss of the good bacteria from the antibiotics. I am surprised that your doctor is not recommending IVIG simply based on the low IGG levels. My "non-PANDAS" daughter had a very high CAM Kinase and we are giving her IGG supplements and the high dose probiotics as well. I know how stressful it is to figure the whole treatment plan out, especially if your child is not very severe PANDAS wise. Elizabeth

Our immunologist said very similar things. We have done 4 monthly IVIG's and we see a little set back each time, but each set back is less dramatic than the previous time. The immunologist described the healing process as and up and down chart (looks like an EKG chart) and he said the downs should be less and less low and eventually we wouldn't see the downs. Elizabeth

I was thinking about the same idea for our kids for Christmas and I was worrying about the safety concerns, but I have read so much about how wonderful the trampoline is for the lymphatic system. I cannot remember the details, but I have read this in several books. One was My Crazy Sexy Cancer. Another book was The Body Ecology Diet.

I heart goes out to you.... I know that feeling of your heart feeling broken. Dr. Kovacevic would say to consider the clinical presentations and that the Cunningham test is still in study mode. I have read in other posts that he wonders if Tourette's and PANDAS may be one and the same. I would try to set up a phone consultation with him. Don't give up!!!! Elizabeth

Hi Ellie: I think that you will definitely get a bias here, depending on how people are treating their own kids. I would say that especially since she is older, I would treat this aggressively now to prevent problems for her as an adult. Elizabeth

Hi Manda: I tried this for myself 4 years ago to help with hyperthyroidism. I decided to try the natural route first and it really did help me. We are also trying the homeopathic route with our son now on top of the monthly IVIG and antibiotics. The nice thing is that Dr. Ullman, the homeopathic doctor, has no problem with our continuation of the IVIG and the antibiotics. Elizabeth

Yes, we have seen things that we have not seen since before the steroid burst pre-IVIG. Overall, we are since tremendous improvement, but there are many bumps!!! For instance, we are doing monthly IVIG and the one symptom that has never gone away in the three months is frequent urination (sometimes every minute) After our last IVIG, the frequent urination suddenly stopped and all of a sudden our son developed an old fear of swallowing his legos. Elizabeth

Wendy: I am a little confused about follow the S. Pneumo titers. I would think that you would see false highs post IVIG from other people's antibodies? And can't many people have low antibody responses to the S. Pneumo if they have not been exposed or if they have recently been ill? I am just thinking aloud... Elizabeth

Laurenjohnson'smom: I understand that your daughter is seeing Dr. Trifilleti, Dr. Kovacevic and Dr. Leckman. I believe she also started antibiotics? I am wondering what your next steps will be..... do you plan to try the long term antibiotics for a while or are you thinking about IVIG or PEX? Elizabeth

Dabel: Congratulations on completing the IVIG!!! Our son had his first IVIG on September 1st, although his prednisone treatment was 1 month earlier. In our experience, the IVIG has really enhanced our son's immune system and even when our daughter had the flu, our son did not get sick. However, while he has not gotten sick since the IVIG, we do notice an increase in PANDAS symptoms whenever he is around someone else who is sick. Keep us updated and remember that the healing journey can sometimes be bumpy!! Elizabeth