13 year old son-pandas-update

[mommy007]

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.

[Chemar]

That is such encouraging news mommy007.

Thanks for the update and I hope your info will be able to help others too, especially those whose docotrs dont understand about PANDAS!

 

Congrats to you for being a mom who persevered and did research!

[ad_ccl]

Thanks Mommy007 for that positive update. Just wondered if you could let me know what you consider to have been the proper treatment? Do you mean just the prophylactic antibiotics, or were there other treatments you think were important in your sons recovery. My son is turning 8 and was diagnosed after a very sudden onset of severe tics at age 6. He is doing amazingly well - although the last few weeks has had some ongoing minor tics, we are thinking he is going through a growth spurt. While he can be tic free it does seem that there continue to be lots of triggers, although the triggers now result in very subtle tics, and usually only one - whereas in the early part of the illness a trigger would result in many tics and more severe one's. No one would know he has tics and he does fine in school now, has lots of friends and enjoys all sports. We are actually thinking of going off the prophylactic antibiotics in a week or so now that summer is coming and he is out of school. I am in agreement with you that time seems to be one thing that needs to pass for the illness to pass - after all it is a ped. illness and the body changes so much.

Have you tested the ASO titers during the illness, if so what have your results been. My sons were very high - 1200 at the time of the illness and have slowly come down over the last 2 years to 590 - normal range is under 65. Just curious as any info from other mom with PANDAS kids is so valuable!

[nancy D]

Hi,

Can you tell me who Dr. Brown is (first name, position) at Children's in Philadelphia?

Is there a place to read about your son's case study? What kind of treatment did your son receive?

Thanks so much,

Nancy

 

 

 

 

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.

[Cherry L]

HI everyone, Sorry I think I messed up doing this post. First time! I am from Barrie, Ontario , Canada. I found your site in looking for info on PANDAS. My daughter has un unconfirmed case of TS. Began looking into the PANDAS when told about it by another TS Forum parent(Canada). Had never heard of it. I took my daughter to get her titre tested for strep. I picked up the results today. The doc(walk-in-clinic)we don't have a family physician, had no idea how to decipher the results or what they meant in reagrds to her TS or the PANDAS. He had never heard of PANDAS. Her titer was 698. He said he tought it meant that her antibodies against strep bacteria were very high. (said essentially a good thing). BUt as he had no info on the PANDAS, I was hoping that those of you who are familiar with the tests and the results, would be able to help me determine if this is a good thing or not in relation to ythe possibility of PANDAS. I don't really understand what it is all about. My daughter is 12. She is not currently sick, but a couple of weeks ago she had a cold and the ticcing increased dramatically.

Help!

 

Cherry

[Chemar]

Hi Cherry and welcome to Latitudes

 

if you want to make a post it is best to use the "ADD REPLY" button at the bottom of the page

 

I hope you will return again to make your post

 

[mommy007]

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.

[Pandamom]

Cherry - my daughter is 12 also and has been struggling with severe symptoms which her pediatrican has diagnosed as Pandas. In all my research, until today when I found this site, the one person who seems to be a real expert in the field is a Canadian: Dr. Swedo. She has done alot of pioneering research in the field. Perhaps she is close enough for you to contact her.

 

good luck

Tracy

 

 

HI everyone, Sorry I think I messed up doing this post. First time! I am from Barrie, Ontario , Canada. I found your site in looking for info on PANDAS. My daughter has un unconfirmed case of TS. Began looking into the PANDAS when told about it by another TS Forum parent(Canada). Had never heard of it. I took my daughter to get her titre tested for strep. I picked up the results today. The doc(walk-in-clinic)we don't have a family physician, had no idea how to decipher the results or what they meant in reagrds to her TS or the PANDAS. He had never heard of PANDAS. Her titer was 698. He said he tought it meant that her antibodies against strep bacteria were very high. (said essentially a good thing). BUt as he had no info on the PANDAS, I was hoping that those of you who are familiar with the tests and the results, would be able to help me determine if this is a good thing or not in relation to ythe possibility of PANDAS. I don't really understand what it is all about. My daughter is 12. She is not currently sick, but a couple of weeks ago she had a cold and the ticcing increased dramatically.

Help!

 

Cherry

[Pandamom]

Our psychiatrist and pediatrician are looking into the antibiotic treatment for my daughter. Can you tell me what Dr. Brown's treatments were for your son that worked so well? My daughter is 12 and was diagnosed just this year. Her condition is so bad we had to pull her out of school. Thanks for any ideas you may have.

Tracy and Tori

 

 

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.

[Chemar]

Pandamom

 

I am pasting a quote here from another thread where Ronna reports on the success with zithromax

 

Based on the newest research for the NIMH (I think I posted this article last June) we started Kurt on 500 mg azithromycin once a week based on him having kind of an unsettled spring...for along time we treated him as necessary with Keflex and for a few years this worked well but over time he responded less favorably to it.

 

I showed the NIMH article to my doctor and she agreed we should go back to prophylactic antibiotics and I was pleasantly surprised to find that she was much more informed and supportive of a PANDAS dx that ever before in the past 5 years when it felt like she did alot of things to kind of "humor" me...anyways, she seemed to be much more on board now.

 

THE RESULTS: (knock on wood)...Kurt has had his best summer in fve years...no kidding! He has had really minimal tics (only a few days of minor tics during a viral illness we all got a few weeks ago), and most importantly to me his behavior has been really stable and predictable and very age appropriate. Interestingly at one point this summer I missed the dose one week and I really did notice a big difference in terms of his behavior (weepiness etc)...once I realized we had missed it and gave it to him he improved noticeably within two days.

 

The absolute best, best part of using the azithromycin is that it is once a week and therefore easy to do the probiotics, vitamins etc...though I have been a little lax on this...I'm going to work on this now that we are back from the lake...what a big difference from giving the antibiotics every day! He has not had any side effects that I can see.

 

I hope your son continues to do well...I will find the article from the NIMH and post it again on this thread for anyone who has not read it and are interested.

 

A link to the article I mentioned. Ronna

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

 

Snider, Lisa A; Lougee, Lorraine; Slattery, Marcia; Grant, Paul; Swedo, Susan

Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders Biol Psychiatry 2005; 57: 788-792

 

[mommy007]

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.

[Pandamom]

Mommy 007 and Chemar

 

Thanks for sharing with me. We just started the antibiotic treatments yesterday. Zithromax 250 mg for 10 days and then 500 mg weekly. I'm keeping my fingers crossed and hoping that eventually we can take her off the risperdal for tics and the valium for VCD. We also went to the ENT who thinks her tonsils and adnoids may need to come out.

 

Anyway, we have her first IEP meeting this morning. What a long strange trip its been. Through it all we keep looking for the good - right now she should be starting the teenage "mom stinks" temper tantrums and instead this has brought us closer together - of course we still have tantrums about things like leaving the house

 

I'll let you all if the new antibiotics work. We also have an appointment with Dr. Tanya Murphy on November 3rd and I'll fill you in with any ideas she has as well.

 

Thanks for all the support and I hope everyone has a great week.

Tracy

[ad_ccl]

HI Pandamom

 

What you are doing is exactly what we are doing, and started at the end of August - we have seen amazing results - in all areas - vocal tic 100% gone (well 99.9% - comes back very softly when eating a times, but only a couple times a meal - not every second and not loud -no one would notice) Behaviour is so stable, he is on such an even keel - he came bouncing out of school yesterday - running full spead. He may even go to soccer tonight, and has not played all summer.

 

Good Luck - keep us posted. We saw a significant improvement by day 3 - but saw some improvement even overnight the first day. By day 10 - 100% tic free - eye stuff has come back in a subtle way - with lights at school - but even that is going away now.

[Pandamom]

Thanks ad ccl

 

Today is day 3 and we were out of town for an overnight trip. Tori did not tic once - she's on risperdal but always keeps a tiny tic for anxiety type situations - and she didn't seem anxious about being away. So I'm keeping my fingers crossed. We see her psychiatrist next Tuesday and I'm going to ask if we can stop the risperdal to see how the tics are doing without medication.

 

I'm very hopeful. It's hard to see her so "out of it" all the time. She is starting to miss school and friends too. I cried when I read your response (tears of joy and hope). It's so wonderful to know that these kids can make it back out into the world. It must be amazing to see your child come back!

 

Thanks for sharing and I'll keep you posted.

[ad_ccl]

So glad you are seeing an improvement - my son did play soccer last night and was none worse for wear today - today no vocal stuff when eating - so no vocal stuff at all! Can't believe we had a summer of once a second vocal stuff. Today is his antibiotic day - he still has some minor eye stuff but it really is more like an eye irritation, and is mostly when watching tv - even though it is an LCD. My son woke up early on his own today, after a later night and doing homework after soccer - his choice as we said he could do it all tonight, but he wanted to spread it out. He has chosen to start coming home at lunch and I think this is helping too - he is eating a good meal and having a short break. I feel like my son continues to do better and better as time is passing on the azithromycin. I was telling a friend today that I feel he has been more stable the last few weeks than any time over the last two years. Stable not just tic-free wise but emotionally, we are not having the ups and downs we have had before. I am going to do some research on azithromycin's use with Cystic Fibrosis patients as an immuno-modulator. I am starting to become convinced that the drug is modulating his immune system somehow. We are thrilled with the results, and Ronna has also had great results, it would be great if you do as well - as we would be seeing a clear pattern and be able to point other PANDAS moms in this direction to try.

 

Keep us posted. So glad our story is helping give you hope! I know Ronna's posts gave me so much hope early on as well.