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DD w/Pandas a LONG TIME 5+ yrs (went undiagnosed)


coco
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Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment?

 

The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion.

 

Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here.

 

coco

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I know your fear and worry. Our son just completed his second IVIG with Dr. K.... he is only 5. From what I understand, recovery can take a full year or two. Keep adjusting the baseline up for your daughter with each improvement. Starve that bacteria/auto-immune response out of her system and never lose hope.

 

You are in a really good position with monthly IVIG. Hang in there, as I know you'll see huge improvements over time. I also understand with each IVIG some of those cross-reactive antibodies can get stirred up causing a 'flair' in symptoms. I'm sure others who are doing monthly will chime - in with their experience.

 

Please give me a pep talk back when I'm feeling blue.

 

-Wendy

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Coco,

 

How many monthly IVIG's has she had? Does she back slide after the IVIG's? My daughter told me after her last IVIG she had some OCD. For about 3 days started approx. 24 hours after infusion. After IVIG she has had a surge in symptoms temporarily. Does Dr. B have any children he considers back to 100 percent after months of IVIG?

 

I can relate to your concern. Everytime I think my child is close to being 100 percent we have a setback. The good news is these set backs seem to be more temporary. I believe shaesmom has a great recovery story. I am hopeful. I am very optimistic. It takes years for the brain to heal assuming no additional attacks.

 

 

attack at age 7

Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment?

 

The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion.

 

Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here.

 

coco

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Coco,

 

How many monthly IVIG's has she had? Does she back slide after the IVIG's? My daughter told me after her last IVIG she had some OCD. For about 3 days started approx. 24 hours after infusion. After IVIG she has had a surge in symptoms temporarily. Does Dr. B have any children he considers back to 100 percent after months of IVIG?

 

I can relate to your concern. Everytime I think my child is close to being 100 percent we have a setback. The good news is these set backs seem to be more temporary. I believe shaesmom has a great recovery story. I am hopeful. I am very optimistic. It takes years for the brain to heal assuming no additional attacks.

 

 

attack at age 7

Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment?

 

The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion.

 

Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here.

 

coco

 

My son is 15 un dxed for 10 years at least He is also dxed with ASD.Probably is because well he is.Our main issue is his behaviors,tics ,anxiety etc.He has had 1 IVIG in sept this year did well but needs more probably monthly.Hes on antibiotics with Dr T.Does good one day not so good the next,I think its just our journey now to have this ,Hopefully the insurance company will step up and see our son needs the monthly dosages.We are awaiting some blood work STILL to see if he is compromised in any if anyone is wrth it you know its you kid!!They need us I just wish It wasnt so diffucult,and I wish I knew then 10 nyrs ago what I know now.

 

Have a great day

 

Melanie.

Keep your head up and dont give up

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Hugs to you this morning! My girls have had undiagnosed PANDAS I'm pretty sure since they were 1.5 yrs old. They have waxed and waned over the years. They are now 7 and 8. I'm sorry they are not old enough and we have not been on our treatment for long enough to help you with your question but you are not alone.

 

My girls are doing pretty well right now. I am hopeful but I am still worried about their future.

 

Susan

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Ho coco,

 

My daughter had her first symptoms at age 7 and was diagnosed with a tic disorder at age 8. No one ever mentioned PANDAS. She is now 12 and was diagnosed as "probable PANDAS" just one year ago. She had a steroid burst at the time which put her symptoms into complete remission for 6 months. She did have a relapse over the summer following multiple strep exposures and is still recovering. When she is having a rough few days (which are always difficult for me to watch), I try to remember all of those symptom free months and am hopeful that we will get her back to that point. I am also more confident than ever that we have found the right people to help her. We now see Dr. L. and everytime I leave her office I feel hopeful. I have an appointment with Dr. B later this week and hope he will shed some light on correcting the faulty immune response and stregthening her immune system.

 

We have not yet done IVIG or PEX (I would like to, but have been told to date that she is too mild). Try to draw strength from the fact that you are being as aggressive as you can and are doing everything possible. Brain healing takes time. Someone on this forum (was it Vickie?) recently said that when their child was going through a hard time they would tell themselves each evening that tomorrow is a new day - maybe it will be better. I have told myself this on many evenings in the last several weeks and it does help me get through (thanks to the one who posted that!).

 

Hang in there, keep up the hope that this will get better and keep posting how she (and you!) are doing.

 

Debbie

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Thank you all for your feedback and support. My dd has had 2 monthly infusions with Dr. B so far, and her next one is on the 9th. Yes, I do see a huge backslide the following day after the infusion and lasts about 3 days also. It's like everything gets stirred up again. Maybe this is just the pattern I have to get used to. Then she seems quite a bit better, but there are those days...ugh. Sunday we had company over for dinner and I just knew it was not going to be a good night for my dd. Sure enough, I was right. All she kept talking about was "giving the dog a bath" over and over. High anxiety and this weird arm pointing thing I had never seen before. Lots of irrational fears - me turning on the ceiling fan, a bracelet, the red nailpolish on my toes--she prefers it when I wear shoes. These come and go with varying intensity. I was complaining to my husband that we should have done pex, then ivig, because this is taking forever!!

 

Beginning after school yesterday she came home, no issues, did afterschool stuff, homework and we were all holding steady. This a.m. she was great, good mood, happy, nice and "normalish" and hopping on the bus with a smile. It's the inconsistency that is so hard to watch, and for her to suffer through. My concern is that because she has had this so long we will always be living with a certain level of dysfunction which will preclude her from living an independent, normal, rich life.

 

Dr. B. has had one older child (14ish) who comes every month that I know of. He is about 98% better, the nurse tells me, but I do not know how long he has had Pandas. I must remember to ask him about other patients.

 

My hope is that all the Pandas parents whose children have healed no longer post here, because they want to forget this ever happened.

 

coco

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My concern is that because she has had this so long we will always be living with a certain level of dysfunction which will preclude her from living an independent, normal, rich life.

 

That's understandable. Here's what I think- The IVIG will help with the immune issues and the autoimmune issues. But if her normal development was disrupted, she will have to catch up in her development. Keeping her free of PANDAS disturbances will make this easier, obviously. You may be battling this for awhile, but your daughter is still young enough to bounce back.

 

I have a 15yo daughter who has had PANDAS probably from infancy. She is severely autistic. We are pursuing PEX/IVIG. The severity of her symptoms makes it harder to find somebody who will offer treatment. I do not expect treatment to make her "normal", only give her a chance to improve with therapy (which she's had plenty of all her life.). She has made a few gains w/ therapy in the past, but they have been largely lost from PANDAS episodes.

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I don't know if you will find this reassuring or not, but it might help, in difficult moments, to take the long view. Remember that PANDAS has actually been around probably forever, if not diagnosed as such, and many (some say most) of us do well eventually even without any treatment. It took me until my 20's to be diagnosed, by which time my symptoms were much milder than they had been when I was younger. Needless to say, I received no immune tx whatsoever as a child, had to leave school several times, gave my parents loads of grey hairs, etc., but even given that extremely undertreated course, by the time I was a young adult I was doing very well, not just in a minimal self-care way but sailing through Ivy League schools, relationships, etc. By the time I was 30, the infection-triggered episodes were down to being only a nuisance, probably not even noticeable to observers and not requiring any regular treatment. (I had taken LT antibiotics in my 20's.)

 

Some of you might find this interesting, though - at around age 40, I started developing constant infections (I'm now 42), and just in the last few weeks, I had my first real "PANDAS" episode in close to 2 decades - with tics and the whole lot. I've had strep several times in that interval without consequences severe enough to justify more than the usual course of antibiotic, so I have no idea what bug/strain was potent enough to trigger this reaction this time around - but it caused a nasty sinus infection. For the PANDAS sx I was treated with steroids and Augmentin by my GP, and the whole neuro thing cleared up in less than a week. It almost made me cry to see how easy it was to dispense with an episode at this age with one visit to a GP and a few bucks of drugs, after having suffered for months or years at a time as a "difficult" child...

 

Of course, the infection still lingers, and I'm now back under the care of an immunologist and waiting for test results re. primary immune deficiency. My understanding is that the full blown sx of PIV frequently don't become obvious until this age. I'll be very curious to see the results.

 

 

 

Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment?

 

The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion.

 

Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here.

 

coco

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Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment?

 

The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion.

 

Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here.

 

coco

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Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment?

 

The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion.

 

Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here.

 

coco

Our son had PANDAS for over 6 yrs before I found an article about PANDAS and brought it to our family doctor, who was amazed how well the article described our son. We had seen numerous specialist in the medical and mental health feild and he was diagnosed with everything from lupus, JRA, mentally retarded, PDD, anxiety disorder, oh yes and munchhouse syndrome. The only thing consistent in his blood work through all these wonderful specialist was he had a very high SED rate 95% of the time. NO one ever tested him for strep as he never presented with classic strep symptoms. He ran exrtremely high fevers for weeks at a time and when he was not running a fever his temp ran very low (95.5)He has been on daily amoxicillian for 3 1/2 yrs now and showed gradual improvement each year, with last year being fantastic! At the end of the school year however he was exposed to strep and mono and showed middle regression from where he was. he started to come back within in a few weeks, but then got sick and again regressed and slowly started to improve. He began middle school in september, and he was not back to wherehe had been a year ago, but close. he did well in school. He does receive spec ed services but even in the regular ed classes he is in he got straight A's. at the end of the 1st qt (beginning of Nov) he caught the H1N1 flu. He was very sick and missed over a week of school and was a wreck! He had significant trouble functioning at school and came home in tears daily. I find it harder now when he regresses, becasue he realizes he is different now. he makes statements about wanting the old kid back and not liking who he is but not being able to change it. he is aware he is getting stuck (obessed) over stupid things. After 2 weeks of this we brought him to our family Dr. who consults with our Dr. at BOston Childrens hospital and we doubled his amoxicillain for 10 days. after 2 days we began to see improvement and on the fourth day he woke all excited claiming he was back to his old self!. He was much improved put I would say he is at about 80% right now but improving daily. he is a great kind lovable kid when he is symptom free and I always remind myself of that when he is having a hard time and i always try to remember how hard this is for him as well. Our experience is each set back is different in intensity and duration, but the encouraging news is they can recover! Good Luck

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Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment?

 

The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion.

 

Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here.

 

coco

 

Hi Coco, I am sorry that you are going through this. It is so hard to see your child improve and then lose the progress that was made. My son was misdiagnosed with Tourette's in first grade. We were told his tics, his behavior problems, seperation anxiety.....everything was a co-morbid condition of TS. He had an unbleievale exacerbation last Spring and was not correctly diagnosed with PANDAS until this fall. He went untreated for 4 years at least (looking back I think the first PANDAS episode was around 2 or 3). He started on antibitotics in Sept and the doseage was increased in Oct. He was doing great until his sister got pink eye....then we took about 10 steps backwards. He started prednisone after that set back and has made tremendous prgoress. He is now doing even better than before my daughter had the pink eye. Also, this may have already been mentioned to you, but I started charting his symptoms on a 10 point scale each day (thanks to a suggestion from this forum) and it has helped me see that things are slowly but surely improving. I pray that this will give you some hope that it is not too late for successful treatment for your daughter.

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My son will be 14 in Feb, has autism, and developed PANDAS almost two years ago. At present he is now on Zithromax weekly and receives IVIG monthly, since March '09. He has never been completely symptom free, still episodes where I feel like we have started all over. His tic is spitting, obsessive touching and constant chatter....although he is very limited verbal. He is on homebound sevices from school, due to his symptoms, since last school year. I thought life was rough enough but this is extremely stressful, I try my best to remain positive, and vow never to give up. To look back, I think he has had the PANDAS for the last 7 years, when things began to go downhill with his autism and started the OCD behavior. Not a very cheery reply, but I wish you all the very best.

Warmly,

bewell

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