Does PANDAS every go away?

[kmacdonald34]

I am still new in the world of PANDAS/PANS. My daughter is seeing a team of specialists at Mass General and all determined she does have PANDAS. She has been on amoxicillin for 1.5 months and her symptoms have disappeared. The team of dr has been great and told me what treatment could look like in the future and how PANDAS can manifest itself. After meeting with the infectious disease dr we are going to keep her on the antibiotics till school is out, try a break in the summer and probably go back on in the Fall. THrough all of this, I have yet to ask if her PANDAS will ever fully go away, maybe cause I don't want to hear no but now I want to know. Can a child fully be cured from PANDAS or might it impact him/her throughout life? Thanks!

[nicklemama]

Some are. It's probably variable between the individual. I also think it depends on IF you catch it early AND find treatment and whether you can get it into remission. We know there are kids who have seemingly gotten past it. We have parents who now realize they had PANDAS as kids. There are really no quick and easy fixes, though. Most of us are in it for the long haul.

[theotherbob]

From everything I read, there is a very good change that it does improve a great deal for most kids, to the point of it just not being an issue.

 

by all means, talk to your doctors, it sounds like you are getting great care, and they certainly know how hard it is for parents to deal with this.

[MaryAW]

Dr. Swedo said that our children will outgrow PANDAS. I asked her when, and she said by their early 20's. From the message boards, it seems as though some outgrow it sooner than that. With PANS, they do not know for sure, but I feel like my daughter after 3 years is slowly getting better from PANS. What we as parents have to do is minimize the "collateral damage" from the disease by providing our children with the best care possible. Minimize exposure to strep and other serious illnesses, strengthen their immune system by raising their vitamin D levels and giving high quality probiotics. Supplement with high quality Omega 3's to reduce inflammation. Find a great CBT therapist. Read up on the illness and attend the conferences to stay educated. New discoveries are constantly being made that can help us to get our children better.

 

Most of all, love them and be kind and patient

[kmacdonald34]

Dr. Swedo said that our children will outgrow PANDAS. I asked her when, and she said by their early 20's. From the message boards, it seems as though some outgrow it sooner than that. With PANS, they do not know for sure, but I feel like my daughter after 3 years is slowly getting better from PANS. What we as parents have to do is minimize the "collateral damage" from the disease by providing our children with the best care possible. Minimize exposure to strep and other serious illnesses, strengthen their immune system by raising their vitamin D levels and giving high quality probiotics. Supplement with high quality Omega 3's to reduce inflammation. Find a great CBT therapist. Read up on the illness and attend the conferences to stay educated. New discoveries are constantly being made that can help us to get our children better.

 

Most of all, love them and be kind and patient

Thank you, great advice. I feel like we have a great team supporting our daughter and I am trying to educate myself that best I can. I must say it is overwhelming. This board has taught me a lot already. Hopefully we can all continue to get our kids the care they need.

[mommybee]

This is so odd, Mary. Dr. Swedo told me not to expect my son to outgrow PANDAS. He is 19 and had his last recurrence at 18 after a confirmed strep infection. He is currently in remission and completely healthy, but, at her suggestion, he is on prophylactic antibiotics because he is a residential college student living in a dorm.

 

Dr. Swedo advised us to keep our son on prophylaxis as long as he is living in a dorm or working with children. Just last month, she said that in his case, it might be advisable for him to resume prophylactic antibiotics when he has has children, just as he would if he had That's so odd, Mary. Dr. Swedo told me not to expect my son to outgrow PANDAS. He is 19 and had his last recurrence at 18 after a confirmed strep infection. He is currently in remission and completely healthy, but, at her suggestion, he is on prophylactic antibiotics because he is a residential college student living in a dorm.

 

Dr. Swedo advised us to keep our son on prophylaxis as long as he is living in a dorm or working with children. Just last month, she said that in his case, it might be advisable for him to resume prophylactic antibiotics when he has has children, just as he would if he had rheumatic fever.

Edited April 27, 2015 by mommybee

[JoyBop]

Hi there. We also go to the same team at MGH...They are ALL amazing!! No two Pandas cases are ever alike and only time will tell how your child will fare. I could answer your question in so many ways.

 

We spent a week at the NIH with Dr. Swedo and her team last January. He was in recovery phase and still not "well" but much, much better than he had been. She gave me great hope and said that by the time he was in middle school he should be perfect. He was in second grade when this nighmare began and he was in third grade during our visit to the NIH. He is now in fourth grade. He did get better and better, in fact, I just wrote the team a few months ago to say how well both of my kids were doing. Then about 6 weeks ago, after being exposed to strep in his school (he didnt get it) we have been on a journey back through . Unitl this point in time we have experienced mild flares and little set backs, and accepted the fact that at baseline he now has mild to moderate OCD and generalized anxiety. And we could totally deal with that and it didnt prevent him from living a normal life. But this flare has been awful and set us WAY back!

 

Dr. P at MGH treats each child differently based on how they present. The plan for us was to wean my son down from 500 to 250mg of Keflex BID) per day in the Spring and trial him off it for the summer. That has all changed now that he is in a flare. I would take his advice. He is a wonderful and compassionate Dr. and treats each kids the best way he can. Its not a formula.

 

The longer the child has had PANDAS prior to treatment, the longer the healing takes. My kids had it for a long time before our diagnosis. But the good news is we have experienced many good months with only a few glitches.

 

This is how we get through it. Our motto is "Celebrate the good moments and get through the bad."

 

Good luck!

[kmacdonald34]

Thank you joybop, for your motto, I love it. Right now my daughter has been on antibiotics for almost 3 months and is pretty much symptom free, just a few minor minor flares. I think we caught her PANDAS on the earlier side so I am hoping her recovery is on the shorter side. We are going to try no antibiotics this summer and see how she does. Hopefully she will do well! Hope your son is back on track soon.

[JoyBop]

That's awesome Jmacdonald. You are one of the lucky ones!' I hope your child's recovery continues!

[mommybee]

We love the doctors at MGH too. They have brought my child back to 100% more than once. By this I mean no symptoms at all. However, we've been through this enough times to know that cured and in remission are not the same. When my child gets strep, the symptoms come back. This is why we've been doing prophylactic antibiotics since the last infection.

[JoyBop]

Mommybee has your child gotten strep infections while on abx? My child is flaring horribly now after being exposed twice to kids with strep the day their symptoms began. (Hours before their fever) He is on 500mg Keflex BID.

[mommybee]

Yes, Joybop. He got strep while on Azrithromycin. Apparently there are strains of group A strep that aren't sensitive to Azrithromycin in some parts of the country (New England and Chicago, not sure where else). My understanding is that Keflex is not 100% effective as a prophylactic either. If it were me, I'd have my child's throat cultured.

[JoyBop]

We are also in Nee England, as you know. We did try Zithromax for a while with both kids, and both kids got considerably worse so we switched then back to Keflex. My son had an allergy to penicillin but passed the test recently. We may consider trailing him on augmentin.

 

Mommy bee, that's so awful that your child for strep while on abx. We are going in on Monday and hopefully they will want to test him for strep.

[mommybee]

Yes, it was awful, Joybop. But thankfully that was a while a go. Live and learn. My son is fine now. We now know not to count on azithromycin anymore. I'm sure your son will be tested for strep and everything else. We never used the clinic, but I'm sure they're thorough.

[kmacdonald34]

I am in MA and that is interesting to read about some strains of strep not reacting to antibiotics in this part of the country.

 

Thank you for all that posted. I know that PANDAS is different for each child and just wanted to see what others have been told or experienced. My daughter is still doing well on the antibiotics, although the bad pollen seems to be causing some flares this week (or at least that is what I think). We meet with her allergist this week so I will see what she says.

I appreciate all the responses!