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teenager with PANDAS


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My 15 year old just got diagnoised with PANDAS from Dr, K. He has had tics, ocd, sep anxiety, tantums, rage attacks, night fears, on and on for 8 years. He was diagnoised at the age of 8 with Touretes, OCD, SEP ANXIETY. We took the route of ssri.

 

They never really seemed to work more then 70% and things always got worse when he was sick!!!

 

Anyway after talking with Dr, K and going over his symptons, and illnesses over the past 8 years, Dr, K feels 90% sure that he has Pandas, My son had a huge increase with OCD THOUGHTS and rage about 6 weeks ago. He did test positive for type F strep and slowly after being on 3 different antibiotics he is getting better. Dr. K told me that we should pursue IVIG and then a daily doise of 500mg of augmentin for 1 year. He said to expect a relapse in 9-15 months and have to do another IVIG. He said at his age we will not see much improvement with antibiotics and steroids.

 

Is there anyone out there in a similiar situation. My local dr who has been giving the antibiotics is trying to geth the IVIG MEDS.

I just wish we had more to go on as far as a test to know for sure we are on the right path!! Its so hard after so many years of ups and downs to take all this in.

 

Dr. K said we could expect an 75-80% improvement. He said we may never see 100% due to the time my son has been suffering with symptons.

 

80% would be a huge improvement for my son. Has anyone else with older kids received this kind of information from their doctors.

 

Robin

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I have a 15you daughter who has been dealing with this from infancy...we've been considering PANDAS for the last 5 years, but only have really pursued aggressive treatment for the last 9 months-since getting the Cunningham results.

 

She tested positive for strep last September, despite being on a prophylactic (but not full strength) dose of zith. So we spent sept/october trying a lot of different antibiotics-judging effectiveness by behavioral improvement. The last week of Sept. we did a 5 day steroid burst, which helped, but then she got ill with something and had dental work done. Then things really got crazy! Finally, around the beginning of December we did 10 days of rifampin/augmentin combo. That really turned the tide for us-once the yeasties cleared. We followed that up w/ full strength zith prophylaxis. We had 3 terrific months- I don't have a baseline to gauge % improvement, but you know what a blessing it is to have the rage attacks gone! So that three months is now our baseline. At the end of March we did our 1st low dose IVIG-she got a little worse. 3 weeks later we did another low dose- she got really bad again. Last week we did the high dose IVIG and she's beginning to improve. We're trying another round of the rifampin/augmentin combo that did such great things in December, hoping for the same result, and we will do another high dose IVIG in 4 weeks. Augmentin is not a great drug for my daughter- it really amps up her vag. yeast- we're going to hit it hard w/ diflucan this time.

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Hi Robin,

 

I'm sorry you are here and your son is struggling. You will find support and wisdom with these wonderful parents.

 

My first thought, have you had your son tested with the Cunningham tests? For me, that was the first validation that we were on the right track with the diagnosis. Since at this point it is a clinical diagnosis and not laboratory diagnosis, it is helpful to see if our kids fit into what looks like other Pandas Kids in terms of antineuronal antibodies and Cam Kinase II testing. Information is all over this board about this testing. It costs $400.00 and will not be covered by insurance but in my mind, well worth getting the information if you are at all questioning the diagnosis (and therefore treatment options that are designed to help the autoimmune aspect of this disorder).

 

Second, don't give up on your son just because he is 15yo. There are other teens on this forum that have gotten remission of most, if not all of their symptoms.

My dd17 exploded with symptoms about 2 years ago after a series of strep infections, but in hindsight had lesser symptoms for years prior to her collapse. It has been a particularly rugged 2 years, but we have gotten to about 75% improvement. We lost the first year with CBT (counselling) and SSRI's with no improvement. The second year we have attacked it with correct diagnosis (Cunningham testing), antibiotics (long term with trying different treatment options), surgery (tonsillar abscess) and two bursts of month long steriods. The surgery and the steroids are what has worked the best for her (she is one of those kids with chronic sore throats for years, many of other kids with Pandas are not. Surgery not suggested for most). The steroids make a huge difference, but once she is weaning, her symptoms come back. Two physicians have suggested it was time for IVIG, but so far, insurance is not comming through. Then the hard decision if we can pay out of pocket for maybe two treatments.

 

Good luck,

 

Keep us updated.

 

Ellie

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Just wanted to quickly say that Cunningham's lab now offers the option of paying for the test results as a donation to her research. According to DH, the total cost is then about $260 after taking the deduction. Makes everything sound better!

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My 15 year old just got diagnoised with PANDAS from Dr, K. He has had tics, ocd, sep anxiety, tantums, rage attacks, night fears, on and on for 8 years. He was diagnoised at the age of 8 with Touretes, OCD, SEP ANXIETY. We took the route of ssri.

 

They never really seemed to work more then 70% and things always got worse when he was sick!!!

 

Anyway after talking with Dr, K and going over his symptons, and illnesses over the past 8 years, Dr, K feels 90% sure that he has Pandas, My son had a huge increase with OCD THOUGHTS and rage about 6 weeks ago. He did test positive for type F strep and slowly after being on 3 different antibiotics he is getting better. Dr. K told me that we should pursue IVIG and then a daily doise of 500mg of augmentin for 1 year. He said to expect a relapse in 9-15 months and have to do another IVIG. He said at his age we will not see much improvement with antibiotics and steroids.

 

Is there anyone out there in a similiar situation. My local dr who has been giving the antibiotics is trying to geth the IVIG MEDS.

I just wish we had more to go on as far as a test to know for sure we are on the right path!! Its so hard after so many years of ups and downs to take all this in.

 

Dr. K said we could expect an 75-80% improvement. He said we may never see 100% due to the time my son has been suffering with symptons.

 

80% would be a huge improvement for my son. Has anyone else with older kids received this kind of information from their doctors.

 

Robin

 

Hi Robin - I am sorry to hear about your son. I have a daughter who is 15 (no PANDAS) and a son who is 13 (with PANDAS). The rages rages can be very scary at his age.

 

I've not heard of F strep. Could you tell us more about that?

 

I want to tell you that my son has had PANDAS since infancy, but just recently had his first steroid burst during a lengthy exacerbation. The burst was 5 -day course from the ENT (due to sinus infection), followed 1-week later by a 17-day course from immunology (for sinus infection and PANDAS). I was REALLY amazed at the turn around with the steroid burst. He was able to focus on his school work, completed homework without complaints, and I could even read his hand writing. Of course the down side was all of the steroid issues - constant hunger, puffy face, weight gain, etc.

 

He has been off the prednisone for 7 days, but is still on Azith. He is definitely more short-tempered and his handwriting is poorer than it was on the prednisone, but he is managing in school, there are no tics, and he is not reporting any "worries". I am hopeful that this is a sign that IVIG might work.

 

I don't know if that is helpful. Please let us know about "F Strep". Thanks so much!

Edited by kimballot
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Hi, i dont know much about the type F strep. My doctor sent his throat culture off to labcorp and it came back positve for type F strep?? Dr. K said at this point the Steroids are just a tool to see if it is worth the money to pursue the ivig. He words were "if he were my child i would do the IVIG asap"

 

I have to agree with you about the rages. My son is 5 11" and weighs 170. when he rages and refuses to go to school and do something he does not want to do its very very hard my me and his Dad.

 

I guess my biggest fear with the IVIG is that i will put my son through yet another treatment and it wont work. I have told my son that its not a cure and he may still have bad thoughts, anxiety, tics etc. He told me today that if he will still suffer the same symptons that he does not want to do it.

 

His dr. just last friday switched his antibiotic from keflex to augmentin and he seems to be going down hill again. Its just so hard knowing what the right thing to do is.

 

have you done the cunningham tests?

 

Robin

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Robin - we did do the Cunningham test just a couple of months ago. My son's cam kinase came back right in the middle of the PANDAS range. It was very affirming for us to see it in numbers.... Of course, there are kids who very much appear to be PANDAS who's numbers do not come back in the PANDAS range, and that needs to be interpreted in the context of the entire picture.

 

For us, we had years of needing antibiotics for sinus infections and behavior problems every time he came off antibiotics. Then we recently had a PANDAS dx from Dr. T and one form Dr. B - then the cunningham test. I figured I'd try 3 things ( a neurologist, an immunologist, and a blood test) and see if they all agreed, or if at least 2 of them agreed. In our case, all 3 pointed to PANDAS, and so did his immunology tests.

 

Regarding IVIG - we have not done that yet, but are likely heading down that path. It is certainly not an easy decision. If your regular doc is ordering the IVIG, don't forget to make sure it is the dose that Dr. K recommends.... lower doses do not seem to be beneficial for PANDAS.

 

Have you tried any of the supplements people talk about to help with rages and such in the meantime? Does your son have allergies? Just curious. It seems (from what I have read) that kids should be in the best shape possible going in to IVIG, as many backslide a bit for the first few weeks post IVIG. Given your son's size and rages, you want to be prepared for that.

 

Regarding your son's reluctance - of course you cannot guarantee to your son that this will work. With my son, I have him talk with the doctor and ask questions. He usually comes to the point of realizing that the treatments are his best shot.

 

My thoughts are with you!

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My ds16 has some issues that can not be pin pointed to anything as of yet for about 8 yrs. I posted some of his symptoms in prior pages if you want to compare notes. I was never told by his psychiatric anything definite about his diagnosis but was told that my ds had adhd with OCD tendency.

No meds seemed to work ( some better than others but still not good enough to stay on) I have been looking for answers as it is apparent that my ds is not growing out of his problems as we hoped he would once he is in his teen and mature. I have had phone consultation with Dr. K a few weeks ago and he thought my ds might have pandas or bipolar.( because of his rages) He told me only way to see if IVIG would work on my son is to try steroid burst. Even then the success rate for kids in my ds age group is not high ( I suppose a very little data to go from). Dr. K told me not to bother with antibiotics as for ds age.

I visited 3 doctors for prescription for 5 days steroid and got 3 refusals ( they will not even bother to call Dr. K and discuss pandas possibilities.) 2 of them gave me phone numbers for psychiatric as if I did not know one of the most well known one in Southern California who treated my son for last 6 yrs until I gave up on medications 6 months ago.

I would do anything for my ds so he could lead a happy and normal life, but I just don't know if I am doing the right thing by pursuing pandas.

If I had known about pandas a few years ago, I would have been first one in line in front of drs office for IVIG ( stay up all night with tent in front of the office) My son is in critical moment in his life as he is entering 12th grade next year and he has only few months left before he has to take SAT if he wants to go to college and he does ( as strange as it sounds even to me with his B- grade everage but he still has not given up hopes for his future and that means everything to me) It still hurts me to look back and remember how he was such a perfect child and hopes and dreams we had for him before he became ill with obsessiveness. I just don't know what to do. I wonder if there are kids who had successful pandas treatment in their teens.

Thank you for reading my story.

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Pathfinder,

 

I hope you will pursue not only PANDAS, but other treatments as well. Check the pinned thread at the top of the page (http://www.latitudes.org/forums/index.php?showtopic=5023) for doctors in Southern California. The PANDAS resource network lists Dr. Pamela Varady on their advisory board. She may be able to connect you with a local doctor who can be helpful. (Clinical Psychologist, Family Therapy/Family Skills Therapy, Santa Monica, CA www.askdrvarady.com www.learn2listen.com )

 

What makes you think your son might have PANDAS? Have you had any bloodwork? Changes in behavior with antibiotics? It would be good if you could find a doctor that you could see locally, since your case is not clear-cut.

 

If your son does have PANDAS, then you need to follow the PANDAS treatments. If your son does not have PANDAS then you need to look at other alternatives. Chemar posts frequently and she is often on the OCD website of latitudes as well. I believe her son is an adult with OCD, who has symptoms that are managed well with supplements and lifestyle changes. You may want to touch base with her or others on the OCD website.

 

The fact that your son wants to go to school and make something of his life is HUGE. Earning a B- is nothing to sneeze at - especially if he has been able to achieve that while battling OCD and ADHD. If he finds a program that interests him and gets his symptoms under control, he will do well.

Edited by kimballot
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Pathfinder,

 

I hope you will pursue not only PANDAS, but other treatments as well. Check the pinned thread at the top of the page (http://www.latitudes.org/forums/index.php?showtopic=5023) for doctors in Southern California. The PANDAS resource network lists Dr. Pamela Varady on their advisory board. She may be able to connect you with a local doctor who can be helpful. (Clinical Psychologist, Family Therapy/Family Skills Therapy, Santa Monica, CA www.askdrvarady.com www.learn2listen.com )

 

What makes you think your son might have PANDAS? Have you had any bloodwork? Changes in behavior with antibiotics? It would be good if you could find a doctor that you could see locally, since your case is not clear-cut.

 

If your son does have PANDAS, then you need to follow the PANDAS treatments. If your son does not have PANDAS then you need to look at other alternatives. Chemar posts frequently and she is often on the OCD website of latitudes as well. I believe her son is an adult with OCD, who has symptoms that are managed well with supplements and lifestyle changes. You may want to touch base with her or others on the OCD website.

 

The fact that your son wants to go to school and make something of his life is HUGE. Earning a B- is nothing to sneeze at - especially if he has been able to achieve that while battling OCD and ADHD. If he finds a program that interests him and gets his symptoms under control, he will do well.

 

Hi, my phone consult with Dr. K sounds like yours. Dr K does feel like my son has PANDAS based on history and that he did test positive for strep during a big increase in symptons but that being said he also told me that antibiotics would not do much good at this point and a steroid burst would only be a tool for me to decide on the IVIG. he said at my sons age (15) that we did not need to waste time on the steroids etc. He told us to expect a 75-80% improvement after 2-3 months post IVIG (THATS IF HE RESPONDS TO IT) We have not done the cunningham test yet because again Dr. K said the numbers gathered so far were not reliable when you needed to make a decision on IVIG. its hard knowing what to do with the older kids. Robin

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I just want to say that I find all this talk about teens not responding to abx or IVIG very disconcerting. One of the things that made me give up my PANDAS pursuit during my son's 12 year old exacerbation was the "fact" that kids outgrow PANDAS at puberty and he had hit puberty. It wasn't until I read Saving Sammy, and saw his age at treatment, that I began pursuing it again. As you can see from this forum, there are plenty of teens who are still suffering. While I don't know the answer abx vs IVIG (we are still trying to sort that out ourselves), I do know there are teens who have responded to abx and/or steroids and have been helped tremendously. I know there are young kids who have not responded to IVIG. The problem is, I don't think its a "one size fits all" answer. I really think that, just like ssris work differently in each child, abx, steroids and IVIG work differently in each as well. I applaud Dr K for his realistic outcome that even IVIG will not get teens 100% recovery/remission. But I doubt most of us parents of teens who's kids have been sufferring for so many years, even remember or would know what 100% is anymore.

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I just want to say that I find all this talk about teens not responding to abx or IVIG very disconcerting. One of the things that made me give up my PANDAS pursuit during my son's 12 year old exacerbation was the "fact" that kids outgrow PANDAS at puberty and he had hit puberty. It wasn't until I read Saving Sammy, and saw his age at treatment, that I began pursuing it again. As you can see from this forum, there are plenty of teens who are still suffering. While I don't know the answer abx vs IVIG (we are still trying to sort that out ourselves), I do know there are teens who have responded to abx and/or steroids and have been helped tremendously. I know there are young kids who have not responded to IVIG. The problem is, I don't think its a "one size fits all" answer. I really think that, just like ssris work differently in each child, abx, steroids and IVIG work differently in each as well. I applaud Dr K for his realistic outcome that even IVIG will not get teens 100% recovery/remission. But I doubt most of us parents of teens who's kids have been sufferring for so many years, even remember or would know what 100% is anymore.

 

\

 

I wanted to chime in and tell you my 16 year old son definitly responds to IVIG so If you hear other wise (about teens) they are wrong.I think it has alot to do with their age and how long they have been untreated .

 

Melanie

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My daughter 19 now, but her biggest exacerbation came at 17 although we now know from compiling information for all the doctors appointments this most likely began when she was 5. No issues from then until 17 that stopped her from living her life...she now says that she remembers contamination fears but she dealt with them, she had some quirky ocd issues that she thought was just that little quirks and just kept plugging along. Not until she was exposed to strep by a boyfriend with a confirmed case of strep (confirmed after) did she start with the severe separation anxiety and the rest of her symptoms followed.

 

She has been on antibiotics in one form or another since December 2009, found great relief on the first round of augmentin, saw a big shift for the better. Small breaks showed her back slide. She has been on Omnicef since March and is doing well. She is not 100% (her words) but she is doing so much better.

 

We will continue with the antibiotic until we feel it no longer is giving her any benefits...right now she still feels it is. We have talked about ivig down the road perhaps, but that is as far as we have gotten. For right now we are sticking to what seems to help.

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I just want to mention a couple of things.

 

I don't have a teen, but a 6 and 9 yr old with pandas. The nine year old had untreated pandas a little longer (about 9 mos), and is doing great post treatment- but- it has been a little harder for her to let go of anxiety/ocd than the younger one. Unfortunately, if you live in anxiety for a year, your brain learns from it-and maybe the older ones learn "better"- so it may take a little longer, and a little more hard work to unlearn.

 

I think Peglem may have this....but there was a study done in Turkey with young adult males with ocd- who were treated (I think) with plasma pheresis, and responded very well.

 

It is never too late. If it were me, and my kids were older, I would accelerate my pace and aggression of treatment. I would probably listen to Dr K and get to some serious medical intervention immediately (pex, ivig). After that- all problems may not be solved- but from what I have seen, they are in a very good place to at least make progress on their "issues".

 

It is so hard- the older they are the harder it is. But don't give up!

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I agree with being older and having the anxiety can become an issue. It takes more work to undo that, it can become a learned behavior not necessarily knowingly, the body just seems to know when to react since it has been. My daughter though seems to be able to differentiate between the two now. She seems to know if anxiety has come on because she is flaring for some reason or another (allergies have been the main one recently) or if it is an anxiety that has been learned by so many times avoiding a certain situation. She is doing well though in facing those times when she can look at it and say hmmm I feel ok accept when I want to go in that room I don't feel so well...she knows then she can over come it by staying and figuring out what is bothering her about the room etc (ie: can be lights, noise etc)not saying it is easy, still is difficult to do that but I think it will get easier for her and her body won't be reacting as much once she is able to do a situation over and over. If it is anxiety that comes along with a Pandas flare it is not so easy to combat as it seems to keep her in that state...at any rate if it is a flare she just feels plain miserable and wouldn't be trying to combat anything!

 

 

I just want to mention a couple of things.

 

I don't have a teen, but a 6 and 9 yr old with pandas. The nine year old had untreated pandas a little longer (about 9 mos), and is doing great post treatment- but- it has been a little harder for her to let go of anxiety/ocd than the younger one. Unfortunately, if you live in anxiety for a year, your brain learns from it-and maybe the older ones learn "better"- so it may take a little longer, and a little more hard work to unlearn.

 

I think Peglem may have this....but there was a study done in Turkey with young adult males with ocd- who were treated (I think) with plasma pheresis, and responded very well.

 

It is never too late. If it were me, and my kids were older, I would accelerate my pace and aggression of treatment. I would probably listen to Dr K and get to some serious medical intervention immediately (pex, ivig). After that- all problems may not be solved- but from what I have seen, they are in a very good place to at least make progress on their "issues".

 

It is so hard- the older they are the harder it is. But don't give up!

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