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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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HopeinHIM

personality changes?

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Son (10 yr old) has Pandas and has had such a personality change. Started off with sadness and OCD w focus issues. They thought he was depressed. Always happy in the past. Doc put him on Prozac(only 1 month) and he went psychotic. Then off to Dr T(NJ) and he diagnosed with Pands/Pans It has been three months off all meds except anti b's and anti v prescribed by Dr T . Most disturbing is his change in personality. He is only ten and acts like a 16 yr old with an attitude. Likes to curse and has strong opposition to his parent (us). He was a straight A student with NO behavioral issue other than a bit manipulative, but never talked back or cursed.EVER!! Rages if we try and direct his actions let alone any discipline. Where is my kind and gentle child!! He sometimes will ask me the same! Can this immune attack change them like this for real!?? or does he have ODD and bipolar over nite? Dr T says it's Pandas but some kids have other things as well on top of it. He never ha any of this before!

 

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Just my opinion, but I would say that your son is still "having symptoms".....not had a personality change. My dd was never what one might consider "sweet and caring" (always a bit spoiled admittedly!) but she was never mean or unkind either. Her symptoms started in October and she became aggressive, aggitated, raging, ODD behaviors, mean and just plain old NOT NICE most of the time! :( During all this time she also had severly restricted eating due to extreme ocd. I mention the eating because we finally hit on the right antibiotic, and she suddenly started eating again-- so we know that she's in "recovery".... And since the recovery started, so has the improvement in behaviors. While she's not 100%, the raging has stopped, and even when she does get angry or upset, it isn't anywhere near as intense as it was before. Her general attitude has changed back for the better, and when she does or says something mean now, you can tell that she feels bad about it- where before, she just seemed to downright hate us at times!

 

I remember thinking that it was so sad that she was "mean girl" now, and what a lonely and miserable life she was going to have if she stayed that way. I can say with (a bit of) confidence now, that her personality didn't change, she was just still flairing with PANS. If your son didn't have these issues before, I'd be willing to bet that it's PANDAS being mean, it isn't your son! If he never used to rage before and is raging now, keep pushing for additional/different treatment. What kind of test results has he had?? Other symptoms?.. My daughter's doc has mentioned a number of times that raging, in particular, is a symptom of Bartonella. While we don't have any positive Lyme results yet (I stress yet!) we suspect Bartonella in my daughter and we are treating as such.....

 

Keep reaching out on this board! It's been extremely helpful for me and my girl ;) list your symptoms, treatment, etc. and someone may suggest something that could help!

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Just curious... Did the raging, etc. ever stop while in meds? I'm wondering how long your son's treatment lasted, and why he's off meds if he's still having symptoms?

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I don't know if this will be encouraging or not, as I sadly know that IVIG and pheresis are not always readily available to everyone, but I want to share our experience, and encourage you to have hope that WITH TREATMENT he will be back.

 

Yes, this can happen, and it can happen more than once. Our d's symptoms literally morphed from severe OCD to ODD with seemingly little we could do to recover her--she was in 5th grade the first episode this happened, it was unbelieveable--She became someone else and was uncontrollable. I have an advanced degree in special ed...every behavioral intervention fell short...She put holes in the walls, etc.

 

We had IVIG and it completely restored her, sweet personality, OCD and ALL ODD literally "faded" away week to week, it took about 3 months to get to 100% -- that first severe episode. Recovery started and was evident within 48 hours, literally.

 

For 18 months she was 100%. School, friends, all was good.

 

Second severe episode and the same happened, OCD into ODD, again, raging--swearing, couldn 't say a kind word, --attacking us physically. (calls to police type of rage, breaking windows, cutting my clothes, etc.)

 

We did IVIG and it did not help this time, seemed to make her worse(?)....

 

We did plasmapheresis a year ago and slowly...slowly she has come back, with OBVIOUS improvements week to week as the raging slowed, swearing, attacks became less and less frequent. She had been out of school for 7 months, and after pheresis was able to return 2 months post pheresis.

 

We also went to Rothman Clinic for 3 intense weeks with Dr. Marni Jacob, wonderful amazing insightful--I can't say enough about her...but it was ONLY once pheresis was done that my daughter was "available" and able to be "there" for it--she could not have benefited from the Rothman Clinic if the physical treatments of IVIG and pheresis had not been done.

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A child does NOT develop overnite bipolar. The anger and behavior are symptoms of PANDAS/PANS. It will go away with treatment but it will not go away overnight, unfortunately. Our son was very angry and rageful. Treatment has diminished all his symptoms. The first IVIG did him a world of good. The second we did not see nearly the recovery. We have seen the most recovery and "normalness" of behaviors after finding lyme and coinfections and treating them. We've been at this nearly 5 years now. The last year, things have been very normal in our house. Knock on wood.

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DS 16 is in remission at present. During the 16 1/2 mo of his most severe exacerbation, he went from king of kindness to arrogant and bossy with a strong desire to compete/win at everything. When the remission occurred, the real DS returned in full. Your DS is still in there.

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Hang in there. Is your son on any specific treatment plan? My son also got sick when he was 10 but his symptoms have come on gradually. He was also the straight A student and had no behavior problems either. When my son goes down with an infection, he is somewhat moody and irritable.

 

From what research I have read the anti-neuro antibodies found in the brain will cause the symptoms you are describing. It sounds like you have found a very knowledgable doctor to get you on the right track. It does take time for healing and finding the right treatment. My son just started a treatment plan of IVIG and he is 14. It took us awhile to figure out what was causing his illness.

 

Edit: As a parent, I have also had a hard time understanding what symptoms these brain antibodies can cause. I found an article that was written by a lab that explained what other illnesses these antibodies can show up in. I am not promoting this lab and did not have my son's testing done there. I just thought the article did a good job of explaining other illnesses that could be caused by these antibodies. Hope this helps.

 

http://www.wieslab.se/index.php?headId=73&pageId=73&langId=1&diseaseId=94

Edited by rachel

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My son as well morphed into an aggressive, bossy, controlling, and mean child when he was in flares. This aspect was one of the harder ones to watch. I think it is the inflammation at the dopamine receptors that can take credit for this.

 

My ds is really such a sweet little pea. He is my one that says, "oopsies" when he drops something. He is very loving and still loves to cuddles.

 

At school, and other social arenas, because of some of his big flares in the past, I know that he is viewed as a child whom is thoughtless, and a bully. This could not be further from the truth. But try explaining this to a mom whom your 8 year old son has just told their precious 5 year old to %%%%^###$!

 

Between flares, he does go a lot closer to his baseline personality, depicting a kind child, but I must admit that some of those negative traits can crop up under stress or too much stimuli. I think that a lot of the pandas symptoms are still going to linger, showing expression from time to time while he is still healing. I also think that when somebody acts one way for several weeks at a time, it can also become a bit of a knee jerk response.

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Have you tried giving him Ibuprofen? When my 10 year old DD is flaring I give it to her twice a day. You also should be supplementing with high quality Omega 3 fish oils (we use Nordic Naturals Ultimate Omega Juniors) and vitamin D (we use Nature Made soft gels). The dr. will have to guide you on a dose for the D, as you want to get the level to between 50 and 80 ng/ml.

 

Another thought is allergies. Pollen season is very tough for us. Zyrtec and vitamin C have helped us with coping with allergies.

 

Also, are you using a therapist? Talking to someone may help him.

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