kthomas

Thank you for your reply and so glad to hear that your son is doing well.

I just finished reading Dr. Kenneth Bock, MD's book called, Healing the New Childhood Epidemics, Autism, ADHD, Asthma, and Allergies. Along with the 4 A's he mentions PANDAS patients and what his treatment plans were for them. Has anyone tried an integrative doctor and have you had success with the treatments? I am curious because my DS7 is really struggling with his co-conditions of tics and ADHD. We have tried medications for the ADHD Clonidine and Intuniv. Neither worked well - he was a zombie on Clonidine and Intuniv has brought on more tics, continued aggressiveness with peers and lots of impulsivity. Now the neurologist wants him to start with Risperdal. I tried to discuss finding the root cause of his ADHD and TS, but she is convinced he has TS and not PANDAS. We have never had a conclusive PANDAS dx because of lack of concrete strep dx, but he has had many of the symptoms; urinary frequency, sudden onset of tic, OCD behaviors, and escalating ADHD. I am frustrated because I feel like the doctors are so quick to rx the antipsychotics, but won't try the antibiotics. Back to the book: It has great sections on supplements, their uses, descriptions, and a range of dosing amounts. It also went over all of the medications that are being used for the 4A Epidemics and the success rates for the patients. It is a great reference book and brings up a whole new way of think about finding help for our children.

After posting, I recalled reading this information about Autism and nutrition, specifically GFDF diets and how it positively impacted many of these children. It is what led me to follow up on allergy testing for my son. I am not sure on how to upload a pdf document on this site, but if you email me, I will forward it to you. Metabolic Abnormalities in Autism: Analysis and New Treatments Dan Rossignol, MD FAAFP

DS7 dx with TS and ADHD and possibly PANDAS, has been following a mostly GFDF diet for two months. This started after an allergist suggested an elimination diet for these plus other foods that produced sensitivities in the testing. It has not been easy because everything he likes to eat contain these two ingredients. We have not seen remarkable differences in behavior, but his congestion has improved dramatically. The one weekend he stayed with his grandfather and ate off the diet he came back home congested this quickly developed into an infection. His tick increased dramatically and we immediately rushed to the Dr. for an antibiotic. The antibiotic cleared the nasal infection/ticks/ADHD behaviors. So for our family the GFDF diet helps to control congestion/inflammation which then manifests into infections and increased tick and ADHD behaviors.

Our DS 7 was put on Clonidine in Feb. for tic disorder and ADHD behavior. The rx worked pretty well for him as it lessened his anxiety and made him much less impulsive, but it made him a little too sedated and we only used half of the prescribed amount. So he was getting 1/4 mg in AM and 1/2 mg in PM. So from hands on experience less is better. Maybe it is something to do with the blood brain barrier being breached and medications have a greater effect. As a side note the neurologist just changed the rx from Clonidine to Intuniv because of the sedative nature of Clonidine. She did caution that the tic might become more pronounced with the change in medication.

DS 7 sudden onset of tic started in November when he was exposed to strep. Why would the level of AntiDnase be elevated now?

Dr. I in San Antonio called reporting DS 7 anti-dnase results as 191 with reference range of 0 - 70. However the ASO titers were 60. His ASO titers have been falling since first tested in February. They have gone from 125 on 2/10; 76 on 3/16; and 60 on 7/13. Why would the Anti D be elevated and the ASO titers falling? DS 7 has never been officially dx with PANDAS because of lack of definitive strep test result despite having many of the other symptoms: sudden onset of tic, accelerated ADHD behavior, urinary frequency x 4 separate episodes, sleep disturbances, etc. We were waiting for the results of the Cunningham test to review PANDAS dx with Dr. I. , but now will not get results as the study has been canceled. I am really worried about the approaching school year and feel that medication for ADHD behavior will be necessary for son's success.

My DS7 had 4 bouts with urinary frequency. I had no idea what was going on and did seek help from a doctor who also did not have any clue. That happened the year before he got the rest of the PANDAS symptoms. The the tics and behavior started and I started looking online for answers and thank goodness found this forum which answered so many questions. The urinary frequency being a co-symptom that I looked into and found this article by the New England Section of the American Urological Association 75th Annual Meeting on Sept. 29 - 30 2006. Strep and Urinary Frequency: Is There a Connection? by Christina Kim, MD, Steven G Docimo, MD. and Kathleen Mckay, PH. D. This is what the conclusion states: "Most patients with IUF have a self-limited course regardless of treatment provided. The prevalence of similar symptoms in patients with PANDAS does question a possible relationship between IUF and Streptococcal infections. This case series suggest a quicker resolution of IUF patients when treated fro a coexisting Streptococcal infection. However, further data in a prospective series is necessary to better assess a reliable association." I hope this helps. Good luck and keep looking for answers.

I have the same concerns as many of you and have found this book helped me. When I read this book, I felt as if finally someone understood the intensity of my child and that it was not my imagination. It gives a tool box of helpful ideas and has great ideas on what we can do as parents to facilitate our children's forward progress for coping with their lives. Raising Your Spirited Child by Mary Sheedy Kurcinka - a guide for parents whose child is more intense, sensitive, perceptive, persistent, and energetic.

It has been a long road since asking for and getting help from the forum. Thank you to all of you. Dr. Infante's information was invaluable. The appointment was last week and he was fantastic. Thank you to all who sent the information. After reading about the Cunningham test I emailed her and asked for the test. It took a couple of weeks to get a response, but both she and her lab assistant have been very helpful. They sent the test out to me FedEx with all the instructions. The hard part was finding a lab that would help. We ended up getting the lab work done in the hospital after Dr. Infante's appointment. My son is doing better, his tic and behavior problems are subsiding substantially. Waiting for results.

It has been a long road since asking for and getting help form the forum. Thank you to all of you. Dr. Infante's information was invaluable. The appointment was last week and he was fantastic. Thank you to all who sent the information. After reading about the Cunningham test I emailed her and asked for the test. It took a couple of weeks to get a response, but both she and her lab assistant have been very helpful. They sent the test out to me FedEx with all the instructions. The hard part was finding a lab that would help. We ended up getting the lab work done in the hospital after Dr. Infante's appointment. My son is doing better, his tic and behavior problems are subsiding substantially. Waiting for results.

We had our first appointment with Dr.Infante last week. I am at last feeling a sense of relief and that maybe we are in the right place. He is suggesting pursuing the IVG if the Cunningham test comes back positive. How did your IVG go? Were there any side effects?

My ds6 started with three days headaches and 1 day of high fever which is what prompted us to go to the doctor in Nov. 2010. Despite telling the doctor about the symptom, his tic and that many students at his school were coming down with strep and scarlet fever she did not test for strep. She did put him on RX Cedax for 10 days. Now he has no dx of PANDAS but his behavior has worsened. Recent trip to neurologist has his dx as Tourettes and ADHD and want to medicate for this.

Thank you for your insight and sharing your knowledge. Your experiences open possibilities for our ds and finding relief for his symptoms.

Prayers and blessings to you and your son.

Are there any holistic treatments for PANDAS?

Where do you get a Cunningham's test done?

What is a Cunningham's test and where do you get it done?

Sent you a message! Where was the message sent?

I am new to the forum too. My ds6 has had a tic for 2 months after exposure to Strep. In Nov. Dr. put him on Cedax for 10 days and he got a little better but had a tic. I didn't know about PANDAS at the time so I thought the behavior would extinguish itself. Two months later he still he licks his hands and then wets around his eyes about repeatedly. This week he was dx with Tic Disorder from the pediatrician, but when I mentioned PANDAS and putting him on abx she told me that PANDAS was not his dx. She did refer us onto a neurologist, but 3 days later still do not have an appointment. Blood test for antibodies was run today. Waiting on results. My reason for thinking my son has PANDAS is the sudden onset of tics in conjunction with strep. He was not dx with strep at the time, but he and I were both exposed.

My six year old son was just dx with Tic Disorder this week. Dr. wouldn't prescribe antibiotics and referred him to a neurologist. Could have to wait two weeks for office visit. Does anyone know of a doctor in the South Texas, San Antonio area that is familiar with PANDAS treatment.