stacielynne

My son had some of the same tics for about two years. Some of things I believe helped are chiropractic adjustments weekly,accupunture,calm kids,omega w/D3,probiotics and good multi-vitamin.I also believe in no dye,dairy,high frutose,msg and artificial free diet. My son head tic was so bad two and half years ago....we rushed him to the ER. He has been 100% symptom free for the last 7 months. My heart aches for you because i know what a daily struggle it is...i hope it gets better for you.

I think 100% chiropractic adjustments help with Pandas. Two weeks before my son's six birthday he showed symptoms of Pandas. For two and half years we have been through countless doctors, antibiotics, steriods, diets,accupunture, chiropractic and therapys. Tyler has been symptom free for almost seven months....I believe chiropratic and accupunture treatments have played a big role...I would give it a try...

My son Tyler started a clearing throat tic a few days ago........does anyone have any supplement suggestions for him? He has been tic free for about a year. He is currently taking Augmentin, Probiotics and vitamins. Any ideas would be greatly appreciated.

I have a seven year old boy with similar tics. He does a no dye,dairy,gluten,msg and perservative free diet. He doesn't eat high frutose syrup for the most part. I have him on supplements and probiotics daily. He does cognitive behavior therapy. He is 95%better.

Hi- My son Tyler experienced the same symptoms about a year ago. He had all the same behavior that you are describing. He also had severe tics. I took him CHOP (Pittsburgh) and several other doctors in the area. It's been a year and I would say he is 90% better. He's been tic free for six months. He still suffers from moderate ocd and some anxiety. I changes his diet( NO msg, perservatives, dyes, dairy and sugar) I take him to a wellness doctor, who put him on vitamin therapy. He is starting cognitave behavior therapy for the OCD on Thursday. I heard CBT is really helpful for kids with OCD. Good Luck to you and your family. It will get easier.

My son looked like he was playing the piano for about a month last year.(when his illness was at his worst) It wasn't jerky like his other tics. His father had sydenham chorea when he was a child and they say that is a common movement. My son is doing 95% better and I no longer see the piano playing movement.

My son is on the same diet and we are having the same results. He has been tic free for six months but, he still struggles with mild OCD and rage issues. I am very pleased with the results so far. He is also taking super immune space sprinkles. Its a natural way to help any yeast issue. I'm so glad your daughter is doing well.

Tyler had his adenoids taken out when he was three years old. He has suffered with sinus problems for years.

Tylers doctor has decided to take his tonsils out. I just wonder if this will cause a flare up of symtoms. Any thoughts?

I would love for you to email that to me. My email is sfalt76@yahoo.

She thought IVIG should only be used in extreme cases. She said it needs to be researched more. We are still considering it.

If you go on the Childrens Hospital of Pittsburgh site and type in Pandas, the study will come up. Tyler was seen about a month ago. They are pretty much doing research for the study and not really any treatments. They will do throat cultures and bloodwork. The doctor I spoke with is against IVIG or plasma exchange. She is sending me a letter explaining Pandas and requesting antibiotics to be given to my son. She said it will make things easier with the pediatrician. I have all the contact numbers if you need them.

Hi Kelly- I took my son to the Pandas study at Pittsburgh Childrens Hospital. He was seen by Judith Martin, I was told she is a strep expert. He is not on antibiotics right now. I also contacted Dr.K because of diffuculty with Pittsburgh doctors. Here is my email sfalt76@yahoo.com if you would like to contact me. I would love to compare notes on this.

I agree with you. I have his fathers medical records from when he had Sydenham Chorea. He was twelve years old at the time. The symptoms are very similar to Tylers.

I have taken my son to see several doctors in Pittsburgh. I haven't come across any really willing to help. I was able to take him to a strep expert at Childrens Hospital. She seemed interested in the family history of his Dad having Sydenham Chorea. She is sending me a letter so I wont have problems getting antibiotic from the Pediatrician. I spoke to Dr. K and I am keeping the IVIG in mind. Presently we are working with a wellness doctor on supplements and diet. Does any one know of a Doctor in Pittsburgh or surrounding areas? Does anyone have any thoughts on the connection between Pandas and Sydenham Chorea? The more I research they seem to be one of the same. I watched Dr. Swedo Pandas speech and found out certain antiobiotic(azr) doesn't work on strep found in ohio valley, PA. When Tyler got sick last year that was the Antibiotic he was on. Really nice to find out after the fact. Thank god for Dr. Swedo. Any thoughts or comments would be great.

This is my first time posting anything on this site. I discovered this site months ago. I have been on it everyday reading about everyone experiences with Pandas. I just want every parent, that posted to know how inspiring they are to me. In some of my darkest days with my son this website gave me hope. Here is a timeline and Family history of my son. Family History Mother:Spinal menigitis (1year old) Father: Sydenham Chorea(12 years old) Father Aunt: Rhemautic Fever(8years old) Tylers timeline Oct.2007 Dtap,Ipv and MMR Shot Oct2007- April 2008- My healthy child was constatly sick.(sinus infections, intestional flu, bronchitis, flu and colds) May 2008- His symtoms were so severe, I rushed him to the Emergency Room. May2008- Within a week he developed Tics(neck jerking). OCD, Seperation anxiety and rage attacks. April-May 2008- He had a rash on his butt that would not go away. June-August2008- symptoms improved 50%(mild ocd, rage attacks and his fingers look like they were playing piano) September- Present- 95% little OCD Medicine He was on clondine for a few weeks in June and antibiotic. No medications from July on. Diagnosis Pediatrician- Maybe Pandas Neurologist- Tic Disorder I have researched Pandas every free moment since May. We are now starting a starting a special diet and vitamin program. I just want to thank everyone again for the knowledge and inspiration you have given me. Tyler is doing well right now, but I will constantly search for answers. I welcome and ideas or thought on this. God bless you all.