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mommy007

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  1. Welcome Trubiano!! I am the mother of a 14 year old son who was diagnosed with PANDAS 4 years ago - he has had symptoms for about 6 years. He was misdiagnosed for a couple of years. my son was put on antibiotics 250mg. twice daily. It took time, but he slowly recovered. My son suffered from what looked like ADHD, sleep problems, bed wetting, tics and ocd - he was a mess. it seems to me daily medication is more consistent that injections - you are seeing a pattern, you son is having tics a week prior to his next injection. I would speak to the doctor and get him on a daily antibiotic. As far as school goes. is he entering 1st grade???? The school is going to notice, it's best to approach them, with documentation, doctors notes and info from the web. I actually contacted the NIH and spoke to several reseachers working with Susan Swedo during our ordeal. Documentation is powerful. See if you can find a child advocate to attend a meeting with school personal prior to the year starting. The school will only do what they have to do, so you need to tell them what you want and ask what is offered. A child advocate will help support you, and make sure your child gets the support and understanding needed. I also recommend documenting from now on, what medication he takes, how much, what effects you see. And as time goes on notice when he gets sick, what symptoms he has and how long it lasts. This was very helpful in proving to additional specialist my son's history. And always let the teachers know if your son has a "flare up". They always appreciate knowing, they do sence when things are different and appreciate the heads up. It can be tough at times but work with the teachers and utilize all they can do for him. He needs time for the antibiotics to work. I went through many hard times, my 14 year old is going off the antibiotic this month - he is 6foot tall and has NO symptoms at all! It does get better - If I can be of any help to you and your family just let me know-- Barbara
  2. Hello, My son who is 14years old and 5 foot 11 went for his Neuro checkup. My son has been doing very well and is on Penn antibiotic for the last 4 years. The doctor wants to try to stop the antibiotic this june. He intends to take titer counts prior to stopping the antibiotic and then again 3 months later. Questions: Has anyone else discontinued the antibiotics successfully? Do you know when it is recommended to discontinue the antibiotic? Thank you
  3. quick update I just spoke to Dr. Brown (CHOP). I wanted to know if he wanted blood work done again on my son. He does not feel it's necessary since he is doing well. he told me he is going to a conference in two weeks to debate PANDAS. he is a real skeptic but feels my son is the closest he has seen in his practice that comes to this diagnosis. He said he may be calling me in a after the conference for more information. I guess it depends on how his debate goes. I think doctors have a hard time with the diagnosis because the symptoms are all over the place, and a child can display them at different times. I have tracked my son's illness/symptoms with charts electronicaly for the last 5 years. I believe it's necessary to get a diagnosis, we as parents know what we know, but they seem to see it better on paper. I always advise parents to document, it really is helpful.
  4. just an update. my DS is now 14, doing great. his last to colds/illnesses were pretty bad, however he never showed any symptoms of PANDAS. These were the first two illnesses that he managed symptom free! Also, wanted to mention, DS AntiDNase B titers were at their lowest, 340 - for 3 years, never went lower (higher sometime when ill). Last year he was put on a steriod for chest congestion, the steriods really helped the cough, it had been going on for 2 months. Anyway, he had a AntiDNase B titer done within 6 weeks of the Steriods, which he was on for a week and his AntiDNase B titer had dropped to 240 for the first time. I had been told by a doctor at A.I.Dupont for Children that a steroid burst may be helpful, it seems it did make a difference. Just wanted to share.
  5. Dr. Brown's treatment was a continuation of the treatment my son received from Dr. Borkowski at DuPont hospital for children. My son is on Penicillin, 250mg twice daily, a one a day centrum for kids, a probiotic and Ginkgo balboa (twice a day). I have an IEP meeting scheduled early in octobor, I believe it might actually be time to eliminate the IEP. My son was ill in early September, 8 days of a cough, cold, sneezing etc. This would always cause tics and other symptoms - but for the first time, the first time, he got through it symptom free!! I do believe most children with PANDAS will grow out of the symptoms as their immune system matures, that seems to be what's happening to my son.
  6. Sorry this reply took so long, been away. The doctor at CHOP is Lawrence Brown, he is a neurologist. My son was on antibiotics (250 twice a day) as well as a one-a-day multi vit. He takes Ginko twice a day and a probiotic twice a day. He is 5 foot 10.5 inches now! I believe the combination of growing and treatment has led to his recovery. My son was diagnosed in 1st grade with ADHD, and treated with all the wrong medication for years (5). The last three years have been remarkable in recovery. Dr. Brown was fine with the suppliments I have my son on. After doing an extensive neuro test on my son, Dr. Brown concluded my son does not have an attention problem. But I would bet 5 years ago he may have had a different opinion. PANDAS can look so much like ADHD if misunderstood. I believe the sooner you start the right treatment the sooner you see results. My son's ASO titers were 590 and ANtiDnase B were 480. We know the previous year his ASO's were at 480 so they were slowly climbing. His titers now: ASO are 320 and the ANtiDnase B is 240. I can tell you the NIH believes titers are normal up to 340. I have been in contact with the during the last 3 years. Susan Swedo even returned emails I sent to her when looking for a new doctor after ours at Dupont retired. She had recommended a psychitrist at CHOP, on that Dr. Brown is aware of. Dr. Brown said this psychitrist worked with Susan at the NIH and is treating many PANDAS children in the philadelphia area. I do not know the "case study" Dr. Brown is doing. I just know he was convinced that my son was a rare case of PANDAS, he was excited to meet and treat him. I would be happy to answer any questions you all have. I have kept very good records of my son's illness's and believe that is very important when presenting to a doctor. I have monthly charts of his symptoms and progress for the last 4 years. Every illness and symptoms are listed and the pattern is clear. All this documentation has been very helpful wiith school. The teachers are aware of ADHD, OCD, etc. But they need to be educated on PANDAS. and I do just that every year. My son's success in school is amazing, he enters 8th grade this year and I expect a lot of work and study. But as a parent we must be a part of this education.
  7. Just wanted to give an update on my son, now 13. He was diagnosed with pandas 3 years ago. He has been taking antibiotics all this time. Our neurologist from Dupont retired. I took DS to CHOP to see Dr. Brown. Dr. Brown is a real skeptic about PANDAS. However I was impressed that he had read my sons history and had a summary written down to discus with us when we arrived. The doctor examined my son and said all his past tics and ocd were not typical, he concluded my history of Rhematic fever played a roll. He diagnosed my son with PANDAS and is now using him as a case study. Now that my DS has had the proper treatment/diagnosis he is doing great. He has made honor roll the last two years. He has improved Soooo much, He has NO symptoms. If he gets sick he might get a few, and the teachers don't realize it's actually PANDAS until I point it out. It seems, at least for us that this illness changes as a child matures.
  8. HI, Just wondering. My 13 year old son who was diagnosed with PANDAS 5 years ago is due for a meningitis vaccine. I'm not sure how I feel about this. I expect he will have a reaction - anything that effects his immune system tends to cause PANDAS symptoms. Just wondering if anyone else has had the vaccine who's child has PANDAS. Any reactions? How do you all feel about this?
  9. Hello, I have a 13 year old boy who was diagnosed with PANDAS 3 years ago by a neurologist at A.I.Dupont. My son has been on antibiotics daily since. His improvements are remarkable. My neurologist retired, we saw his replacement this week but he wants to start from scratch with a diagnosis. I am not ready to re-invent the wheel as his current treatment has been so successful. I don't believe the new doctor is comfortable with the diagnosis of PANDAS. I live in the philadelphia/suburb area. Does anyone know of a doctor who is familiar with treating children with PANDAS? Thank you
  10. Hi, I was hoping for any suggestions. My son's foot tapping has increased, it usually does during the winter months. He is also tearing up his work papers, little edges etc. It's noticed at home as well at school. The teachers are great. My son has PANDAS. The teacher is trying to figure out what to do to make it less destractive in school. It drives us nuts at home. Any suggestions about what might be helpful in school? Thanks
  11. Since the Antibiotics - my son has not had a strep - although his titers are still elevated. Any cold, sinus, type infection will trigger symptoms. Even a bee sting made him hyper and OCD! I even notice that when he has blood work done, he is hyper or a day or 3. Weird.
  12. My son has been on antibiotics and probiotics for a year now. His tic's are gone! He also had OCD - gone! They only appear if and when he gets sick. The last time he was ill - fever etc, he starting ticking, stammering, hyper movements etc - I charted the symptoms and worked with the teachers - it only took 11 days for the major symptoms to go away - record breaking time for him. I was on antibiotics when I was 7 until 18 years old - I can still take the same antibiotic - which I have to take when I see a dentist. I never took probiotics as a kid. My intention is to continue the antibiotic/probiotics for now. I have not thought of stopping - I can't imagine going back to the way it was. He is still a bit symptomatic, mostly movements, tapping feet, his current teachers are wonderful. He just turned 12 - I am hopeful that in the next few years his body will work this out. It did for me. We have a 6month appt. at Dupont to follow up with his PANDAS. I will see what the doctor thinks about his titers. The ASO has taken a year to go from 577 to 396 - he did not have any strep within the year. I know his titers have been elevated for years - as one behaviorial pediatrician did an ASO count in 4th grade, it was 480 - the doctor mentioned PANDAS - but assumed my son had a strep in the previous weeks - I told him he did not but . . He was finally diagnosed and treated at the end of 5th grade. Taking him off stimulants was the best thing. They only increased the OCS/Tics - to an extream! The FLU last year, as bad as it was (night terrors) was probably the best thing that happened - it took us in the right direction! The night terrors lasted about 6 months - once his ASO went down in the 400's they stopped - but that was the worst experience in the world. My school district had never heard of PANDAS, just recently I spoke to a school counselor - who sought me out - he daughter has PANDAS - now two children have the diagnosis
  13. oooppppsss, sorry about the HE-double hockey sticks
  14. Yes he is getting the probiotic, as well as a one-a-day. We had struggled for 5 years with a diagnosis of ADHD. Unfortunally I medicated my son and the stimulants lead to much more movement. This time last year he got the FLU and all ###### broke loose, night terrors, picking his face, uncontrolled movements etc. We went to A.I.Dupont, the doctor read all the "evaluations" done on my son, did a complete family history ( I had rhematic fever/chorea ). They did the blood work and his titers were elevated. My son is much better. I can "see" the illness before it shows itself. He gets emotional and I just know he will be ill soon. I have charted his symptoms for a year. Perhaps 340 is a normal range for my son's antiDNase B titer? The ASO is going down slowly. He has not had a strep in over a year, yet his titers are still elevated.
  15. My son (12) was diagnosed with PANDAS this time last year. He has been on antibiotics. His ASO titer has gone slowly form 577 to 396, however his AntiDNase B titer is strange. After 6 tests this year (bi-monthly) he either is exactly at 480 or 340. When it's 480 he is symptomatic, at 340 he is pretty good. Why will the AntiDnase B titer not go down beyond 340???? Has anyone every experienced this??? Thank you.
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