Did anyone's child develop autism after PANDAS?

[SSS]

I was in a lot of research and the brain stimulation would be free. Its a matter of keeping your eyes open and reading not necessarily having money....and homeopathy is like twenty dollars a month if that. Its not a trial..its individual and I graduated college and pay myself for the treatment.... so I work my ###### off its notbjust luck. And the insurance didn't pay..my parents fought just like everyone else so don't judge me and I could care less if you pity me or not.

 

 

And I refer to the top hospitals to place an emphasis on that's where pandas got noticed so if those avenues are available...perhaps pursue them.... by no means bragging about it.

I find myself to be incredibly unlucky, to have pandas in 98, to know no one my age who turned out okay....as you can see the majority on this forum clearly didnt. I have Lyme, and mycoplasma...and you think I'm lucky? Wth. I spent my entire childhood with no one to help...no pandas network, no support...nothing.. not knowing if I'd have permenant brain damage.

 

 

And by the way pandas16, I have lyme, bartonella, bab, chyl. pneumonia and mold issues.

Let's not tit for tat.

And I have no idea, either, if I have permanent brain damage.

But we can't sit and pity party ourselves. Look around. There are many things to be thankful for.

And their are millions of people worse off than we are-

[MomWithOCDSon]

Sorry if it offends you but I don't think its offensive at all. If one day my pandas got so horrific and there was nothing any doctor could do....I would say yeah put me somewhere because with my immune system attacking my Brain...I'm not exactly safe am I...no.......its really possible that it could end up that way for some people. Could end up being that way for me...just how it is...ya never know. I can see why the thought of placing your kid somewhere would upset you though.... I didn't say YOUR kid would end up in an institution....just that its possible for some people. Maybe deep down your afraid of that and that's why you find it offensive.

 

Well, you're entitled to your opinion, as am I.

 

I found your statement offensive not because I fear that outcome for my child, but because I felt it lacked sensitivity and any real thought or context. As much as you may be suffering . . . and I'm sorry for and sensitive to that . . . you have nevertheless gotten through school and college, found a way to earn a living, can be articulate and thoughtful, think for yourself, etc. I doubt seriously that you honestly believe that your own future could ever include being institutionalized, so to throw it on the table like that in front of parents and families who are struggling mightily at this moment is, in my opinion, inappropriate and highly insensitive.

 

Sorry, just call it like I see it.

[dcmom]

I just want to add a totally different perspective, esp for those who are new or for pandas 16.

 

We have not (so far) had a similar experience to those that have posted on this thread. I have two daughters (now ages 8 and 11). They both had overnight onset of pandas almost three years ago (ages 5 and 8). Prior to pandas both were neurotypical; older one high achieving, outgoing, perfectionist. Younger one sweet, kind, yet shy.

 

Pandas hit both pretty hard. OCD debilitating enough that it made school, and even leaving the house impossible. Some academic/ cognitive issues for the younger one, also.

 

We were fortunate enough to treat both rather aggressively and fairly quickly (although older one took almost 9 mos to diagnose).

 

We have found that post-pandas- exacerbation, both are able to pick up in exactly the same place as their peers, academically, socially, maturity, etc. They are both (not gifted) rather advanced academically, have tons of friends and manage these friendships and all relationships at school well, and if anything have more insight, compassion and maturity than the next kid (maybe because of what they both have been through).

 

My younger daughter spent the second half of kindergarten in various stages of pandas. During this time, I was concerned because she had trouble with her alphabet, numbers, days of the week, etc- all which they were learning at that time. She went in for plasma pheresis, and LITERALLY came home from the hospital and could write from 1- 100, knew her abc's in order, wanted to read, could recite days of the week, etc. She HAD learned everything she was taught in K, but was only able to utilize or express it when her episode was cleared- but then it came immediately. It was amazing. These were some type of cognitive issues, not ocd.

 

The ONLY thing we suffer from, post exacerbation (and they have each had about three, and I assume will have more) is residual ocd. We find therapy is needed to get rid of the ocd. I also do think there are some learned behaviors. For us, these seem to be in how they handle/ manage stress. Prior to pandas, they were really easy- I even knew it at the time. Now, they get stressed more easily (for example: if they have lots of homework, if we are extremely busy, if they have a big disappointment, etc) , and I am noticing when stressed, the ocd may uptick slightly for that hour or day or whatever, and that they may resort to some of the coping mechanisms they did during the pandas flare (avoiding, yelling, etc). We deal with the ocd with erp, I now have to figure out a way to deal with times of stress.

 

In PANDAS there is so much unknown. I can imagine, if a child got chronic (untreated) pandas at age 2 to 5, there would be much development missed, etc. If, however, the pandas was stopped (meaning the attack on the brain, or mis signaling, whatevery) I don't really see why the child could not learn to function normally. Kids CAN catch up. I wonder, if they do not, if there is more going on, or if the autoimmunity has actually been successfully stopped. Most researchers feel there is no permanent damage to the brain with pandas. That has matched to our experience.

[nicklemama]

I'm pretty late to this game but there is hope. DS was neurotypical until age 5, when PANDAS hit. We spent his yr in kindergarten trying to figure out what was wrong w/ him. He definitely did not continue to socially mature, and may have actually regressed. He was and is a very bright boy. His saving grace in kindergarten was the fact that academically, he was so far ahead before his illness, he did not have any academic trouble. His social skills did not continue developing.

 

He started 1st grade academically ahead. His teacher had a lot of concerns about his social development during the first quarter of school, as did we. He also had ocd, severe separation anxiety, emotional lability and started ticcing. He was evaluated by a neuropsychologist, who we traveled from MI to DC to see. He was given Asperger's and bipolar II diagnoses. While I could see the Aspergers behaviors and to a lesser degree the bipolar, I could not agree he was Aspergers. He just wasn't always this way.

 

Diagnosed a week later by Dr T w/ PANDAS. The abx and 7 months later, the IVIG, have totally turned him around. The one thing he still lags in is social skills. He's made dramatic progress in the year since dx but he still has a ways to catch up. He sort of missed out on nearly 2yrs of social development and it still shows. He'll be 8 in Dec. He had PANDAS for about 1.5yrs prior to diagnosis. Its a yr since dx. He seems to be developing those pathways now. He remains academically ahead of his peers.

[cab40]

thank you!

Edited March 23, 2012 by cab40

[cab40]

What ABX was or is he on??

Edited March 23, 2012 by cab40

[dcmom]

CAB-

 

I will comment on the ABX. Both of my girls are pandas, and they eventually did not respond to antibiotic treatment. We have had to go farther and treat the autoimmunity. This means: steroids, IVIG or PEX. We have done steroids and pex, which have immediately helped in the face of antibiotics not helping. We now only use the antibiotics to clear the infection, and use the immune modulation to stop the pandas symptoms.

 

We have not done IVIG- however I know Swedo and the pandas docs seem to do a much higher dose. I would be concerned to vary from their protocol, frankly.

 

Is there any way you can get to Dr Latimer or Dr Bouboulis?

[nicklemama]

DS will be 8 in Dec. 2nd grade. Currently weighs 58lbs.

 

He started off on high dose biaxin and that really worked well. After two months, he went to prophylactic zithro and it did not keep him from escalating back. Switched to Augmentin high dose 500mg bid, then to zithro 250mg sid. Abx just wouldn't get him back to a best place. He was certainly functional but he still had a long way to go. He had IVIG in Chicago w/ Dr K this past May. 1.5mg/kg. He was on Augmentin 250mg bid for a month post IVIG. Currently, he is on 250mg Augmentin sid, as a prophylactic. He's as good as he's been since just before he turned 5 and all this started.

 

DS can swallow those huge Augmentin pills.

 

cab40- I don't know where you live but I would get to the closest PANDAS expert.

Edited November 1, 2011 by nicklemama

[cab40]

DS will be 8 in Dec. 2nd grade. Currently weighs 58lbs.

 

He started off on high dose biaxin and that really worked well. After two months, he went to prophylactic zithro and it did not keep him from escalating back. Switched to Augmentin high dose 500mg bid, then to zithro 250mg sid. Abx just wouldn't get him back to a best place. He was certainly functional but he still had a long way to go. He had IVIG in Chicago w/ Dr K this past May. 1.5mg/kg. He was on Augmentin 250mg bid for a month post IVIG. Currently, he is on 250mg Augmentin sid, as a prophylactic. He's as good as he's been since just before he turned 5 and all this started.

 

DS can swallow those huge Augmentin pills.

 

cab40- I don't know where you live but I would get to the closest PANDAS expert.

[cab40]

Hi, Thanks all!

Edited March 23, 2012 by cab40

[MomWithOCDSon]

Well I really believe that if I got a horrible infection and pandas got out of control that that would be where I end up. Sorry.

 

Any chance you're feeling poorly and that is coloring your outlook at present?

 

I'm sorry if you really feel that way. Given everything you've been through, I wouldn't think it's rationally warranted, but perhaps you're feeling worn out and jaded by the "fight" of it all.

 

You're obviously bright and capable. Your existing "mental pathways" appear to be well-established and there for you to access. You've been through enough and had access to so many interventions, you must have some feeling for the ones that best suit you, and there's no evidence that a functioning adult can be mentally catapulted backwards to such a degree by an infection, with the possible exception of Alzheimer's, I suppose.

 

But you are bright and resourceful and, above all else, knowledgeable. There's no reason to expect that you cannot meet whatever challenges come your way with measurable success.

[nicklemama]

cab40- DS was diagnosed w/ Aspergers a week before the PANDAS diagnosis. He no longer has all those Aspergers traits/symptoms after treatment for PANDAS and no longer meets the criteria. He is behind in social skills but is catching up. He does not have an immune deficiency. He's been tested. He's had only the one IVIG. Don't know what the wait time would be. DS never had a steroid burst or steroids at all.

 

We live in Michigan and see Dr K in Chicago. I think there are some doctors in California that are worth seeing. You should look at the threads that talk about treatment in California and ask on the board for recommendations.

[cab40]

Thank you..

Edited March 23, 2012 by cab40

[nicklemama]

Let me see what I can find. Plus, post a message asking for recommendations in California. I know there is one guy some are recommending lately.

[airial95]

Arial95, what PANDAS treatments did you do? How did he get better? Would you mind sharing what kind of treatments he is on now? Thank you so very much, Chris

 

Sorry, I've been away from a computer for a couple of busy days. We just did abx so far, started on azitrhomycin then switched to cefdinir when he was still testing positive on the azith. We've gotten to about 85% back to normal on just the abx alone. Our problem has been constant re-infection. His tonsils are large and they think that's where the strep is hanging out. He goes for a T&A on November 16th, so we'll see if that takes care of us.

 

When he's on the abx, he shows NO signs of autism at all. And now that he's a bit older (4), when he does flare up with an infection, his symptoms are more clearly OCD, not as autistic like as in the beginning.