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My son is 8 years old, weighs 44 lbs and has a CamKinase score of 194. He is currently taking 250mg of azithromycin every other day. He is also taking 2-3mg of lexapro to help with anger, aggression and ocds. Any responses on meds, dosing and changes in behavior would be helpful. We are due to see an imunologist in Oct. and are doing a phone consult with dr. Bouboulis after my son's blood work is done in Sept. He is also doing the IGenex lyme test at the same time. Thanks!

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From what I have heard the antibiotics really make the most difference. I'm so happy you have a consult with Dr. B! I believe the key is just getting to one of THE Dr's. After that things get so much more clear. I wish I could help with the meds but I can not. All I can say is an anti-inflammatory is usually a good idea..like fish oil every day. Less inflammation means less symptoms. Good luck to you!

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My son is 8 years old, weighs 44 lbs and has a CamKinase score of 194. He is currently taking 250mg of azithromycin every other day. He is also taking 2-3mg of lexapro to help with anger, aggression and ocds. Any responses on meds, dosing and changes in behavior would be helpful. We are due to see an imunologist in Oct. and are doing a phone consult with dr. Bouboulis after my son's blood work is done in Sept. He is also doing the IGenex lyme test at the same time. Thanks!

 

Be VERY careful with the Lexapro. Lexapro was the first SSRI dd was put on (eventually switched to prozac). While lexapro seemed to help the OCD, we also got aggression/akathesia/serotonin problems on it. I'm trying to remember the dose she was on, (she was also about 44 pounds at the time--more than 2.5 years ago). It might have been 5mg/day, then eventually upped (to see if it would help more with the OCD) to 10mg (which was a mistake).

 

I think your Azith. dose is good.

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Thanks for the message. I agree that cipralex (lexapro in the US) is not the best choice for our son. He has an increase in tics and I think it makes him a little irrational at times. We have tried prozac and the made him mean. We may have to try another like paxil and see how that works. I hate all these drugs! He goes to see the immunologist on Oct 7th and I am hoping he will give him ivig at that time. We are doing blood work with dr. bouboulis as well.

 

My son is 8 years old, weighs 44 lbs and has a CamKinase score of 194. He is currently taking 250mg of azithromycin every other day. He is also taking 2-3mg of lexapro to help with anger, aggression and ocds. Any responses on meds, dosing and changes in behavior would be helpful. We are due to see an imunologist in Oct. and are doing a phone consult with dr. Bouboulis after my son's blood work is done in Sept. He is also doing the IGenex lyme test at the same time. Thanks!

 

Be VERY careful with the Lexapro. Lexapro was the first SSRI dd was put on (eventually switched to prozac). While lexapro seemed to help the OCD, we also got aggression/akathesia/serotonin problems on it. I'm trying to remember the dose she was on, (she was also about 44 pounds at the time--more than 2.5 years ago). It might have been 5mg/day, then eventually upped (to see if it would help more with the OCD) to 10mg (which was a mistake).

 

I think your Azith. dose is good.

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If you don't think Lexapro is "right", I would start to wean off (fortunately you are on a pretty low dose). Lexapro is not self weaning and you need to go *really* slow. If you wean too fast you can get really bad flu like symptoms.

 

You might consider taking a break from SSRI's (lots of PANDAS kids react badly to them anyway) if you've tried 2 already....esp. if IVIG is possibly in the near future. (Most of the PANDAS kids on this forum aren't on SSRI's, although mine is on a 10mg/day Prozac.)

 

If you feel you need "something" that is SSRI-like, you could try 5hpt (you can search) which (sorry, I'm not an expert on this) as a more natural alternative to SSRI's. Maybe someone that's used it in their kids will chime in with more info.

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In general, the advice for kids with PANDAS is, if you need to try an SSRI, start very low and very slow.

 

Interestingly, this is fairly identical to the advice given to parents of "regular" OCD kids with comorbid conditions like TS/tics, ADHD, and autism-spectrum disorders. Higher doses can activate, but sometimes low doses do help alleviate some of the OCD.

 

Our DS was on low-dose Lexapro for over 4 years with only good results . . . until the latest exacerbation, during which period it did absolutely nothing to help. We tried Prozac and Luvox; our psych does not like Paxil because of the withdrawal side effects, and he always has one eye on weaning the kid off the drug as he/she improves. The Prozac did nothing, and the Luvox seemed to help, though by the time we moved to it, we also had abx going and frankly attribute most of his improvement to the abx.

 

After learning at the IOCDF conference in July that two pediatric studies at Brown University and Pitt found that Zoloft was especially effective (in combination with cognitive behavior therapy) for OCD, we asked our psych to try it for our DS13 (135 lbs.). We began at 50 mg. and had some good results; about 1 week ago, we increased to 75 mg. Thus far, we've had good results on that, as well.

 

Every person is different, so finding the right abx, SSRI and even supplements, sometimes, I think requires a little trial and error. Good luck!

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We have tried 5htp and tryptophan. Neither did a lot for his mean aggresive behavior. He has goods and bads on ssris but the goods do outweigh the bad. He used plot against kids in his class without them...

 

If you don't think Lexapro is "right", I would start to wean off (fortunately you are on a pretty low dose). Lexapro is not self weaning and you need to go *really* slow. If you wean too fast you can get really bad flu like symptoms.

 

You might consider taking a break from SSRI's (lots of PANDAS kids react badly to them anyway) if you've tried 2 already....esp. if IVIG is possibly in the near future. (Most of the PANDAS kids on this forum aren't on SSRI's, although mine is on a 10mg/day Prozac.)

 

If you feel you need "something" that is SSRI-like, you could try 5hpt (you can search) which (sorry, I'm not an expert on this) as a more natural alternative to SSRI's. Maybe someone that's used it in their kids will chime in with more info.

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Would this be helped by ivig? Does anyone know if using ivig would take away the need for ssris? or am I dreaming that there may be a day when my child doesn't need meds?

 

In general, the advice for kids with PANDAS is, if you need to try an SSRI, start very low and very slow.

 

Interestingly, this is fairly identical to the advice given to parents of "regular" OCD kids with comorbid conditions like TS/tics, ADHD, and autism-spectrum disorders. Higher doses can activate, but sometimes low doses do help alleviate some of the OCD.

 

Our DS was on low-dose Lexapro for over 4 years with only good results . . . until the latest exacerbation, during which period it did absolutely nothing to help. We tried Prozac and Luvox; our psych does not like Paxil because of the withdrawal side effects, and he always has one eye on weaning the kid off the drug as he/she improves. The Prozac did nothing, and the Luvox seemed to help, though by the time we moved to it, we also had abx going and frankly attribute most of his improvement to the abx.

 

After learning at the IOCDF conference in July that two pediatric studies at Brown University and Pitt found that Zoloft was especially effective (in combination with cognitive behavior therapy) for OCD, we asked our psych to try it for our DS13 (135 lbs.). We began at 50 mg. and had some good results; about 1 week ago, we increased to 75 mg. Thus far, we've had good results on that, as well.

 

Every person is different, so finding the right abx, SSRI and even supplements, sometimes, I think requires a little trial and error. Good luck!

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I have to agree with everyone about ssri's. Although every child is different I don't think ssri's help very much or at times are just a bandaid(which we need at times.) I have dealt with rage and aggression and it seems that it was all linked to a myco infection. Abx got rid of all the rage and aggression with my dd. Glad you are having the bloodwork done and soon you will find your answers. Hang in there!

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We did not have good results with Prozac. My son complained of "brain flashes." I think he was describing flashes of light or an electric-zap feeling.

 

One thing that really helped with aggression and rages was Abilify. However, the effect seems to slowly wear off and we had to continuously increase the dose, but it made a huge, almost overnight improvement with tantrums and aggression. However, these days I want to get him off the antipsycotics and see how he handles things--I don't like that he's gained so much weight on them and I worry about the long-term effects. I've also been told that it can make OCD and tics worse, so pick your poison!

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  • 3 months later...

Our son has been Rxd Vyvanse for his severe lack of attention. Has anyone had experience with this med? He had a positive IgM for Mycoplasm pneumoniae, high CamKinase score (194), positive IGeneX IgM for Lyme (very high band 41) and is on Azithromycin 250mg 3x week. He is taking .25mg of Risperidone. I greatly appreciate any information given.

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Has he been treated for the MycoP?? Positive IGm would indicate recent /current infection I believe. This is a really difficult bug to eradicate and I doubt the current abx strength you mentioned would do it. Is the Risperidone helping? This was our go to drug at the worst of times.

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We tried Vyvance for 3 days before we knew about PANDAS. He only got worse and so we went to Prozac and he got even more worse. (Grammar?) We then heard about PANDAS and he was put on Augmentin XR and slowly removed from the Prozac. Remember though, our son was not on antibiotics while we were tying Vyvance and Prozac and was getting more ill because of the untreated PANDAS and then began the Sydenham’s Chorea. I asked Dr. L about attention meds and she would not give us any. Told us that Vyvance was a stimulant and that is not good for PANDAS. I asked about Strattera because I heard it was not a stimulant, but she gave a 30 pres taper and said that he may need IVIG. On another note….when the attention issues began overnight, the Vyvace is what I asked the doctor to give him because I teach and have seen so much improvement with little side effects on students that are on this medicine. Our Principal and diagnostician have their children on it as well as my niece. All are doing great on it…but they are not PANDAS kids. I think about how I stressed over that decision and now wish it would have been the “simple” fix instead of the complication that it has become.

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  • 2 weeks later...

Can anyone tell me if the CamKinase protein and PANDAS/PITAND symptoms should go away after enough time on antibiotics? We have only been doing abx for 6 months and have seen great improvements in awareness and short-term memory but increased body movements. He is taking Azith. 250mg 3x week.

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