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KaraM

Doing awesome...story of hope for those that need it

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HI There...

 

I have not posted in a very long time...but we've just had such an incredible few weeks...and I can remember how reading stories like this when we were in the worst place would often give me hope.

 

My dd is now 12. When she was 7 she had debilitating germ contamination fear OCD...couldn't get dressed, couldn't make it to school...I could go on and on, fight or flight rages, adhd like behavior, barely passing the state exams, etc. etc.. I know many of you know exactly what I'm talking about.

 

Dr. B. initially diagnosed and treated for PANDAS, but he eventually found Bartonella and referred us to Dr. J. who also found Lyme. We treated her for three - four years. She finally went off abx a little over a year ago.

 

Anyway, she just finished sixth grade. She struggled in school from 2nd - 5th grade. She even had a difficult start academically this year. But we just finished the year. She participated in cross country during the fall (and received the coaches award). The other day they had a moving up ceremony. She received the science award. She was inducted into the National Junior Honor Society. She made it into the 95+ club (kids with a 95 or above average in every subject). She also received what they call "the bucket" award. While we knew about the other stuff, we had no idea this was coming. But this award it is for the child that comes to school every day "with her bucket full." and "who fills the buckets of everyone else," They were describing my daughter as someone who comes to school every day with a smile on her face, is always kind to others and always asks what she can do to help. I could barely breathe when this occurred. Tears just welled up. No one but my husband and I had any idea what this all meant in terms of how far she had come.

 

My son, too, also had Lyme. His symptoms were mostly physical...although he also had some anger and depression.... But after 6th and 7th grade years that were marked with lots of frustrations regarding behavior (not so much acadademic) he finished the eight grade school year with all sorts of accolades regarding his progress and character.

 

So, for those of you that are in the thick of it now...first, my heart and prayers go out to you. But please know, there is hope! It was a one step back, two step forward recovery for us. And I can't say I didn't sometimes question whether we were on the right path. But we stuck with it even through those moments of doubt thanks to many people on this board. And while I don't log on to this board much anymore (I now am back working full time + and dealing with the logistics of kids that are active an involved in a lot of things), I am always willing to answer emails. I also run a support group here in Salem MA. I will post the next date in a separate post.

 

With appreciation to everyone who has help us and thought of healing for those of you who are still struggling,

Kara

 

 

 

 

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Love hearing stories like yours. Thank you for sharing. Just one question for you... Did your dd have any type of professional therapy to help get past OCD and anxiety or did it just kind of go away on its own?

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WOW. That's all I can say is WOW. As parents, we see the best in our children, despite the obstacles. Despite what the books, psychologists, teachers, doctors friends, family, etc...SAY to US. We the parents, see the best. It is what we reach for.

 

Your story. It is so encouraging. Such nutrition for the soul. The tired soul. The overwhelmed soul, the soul that second guesses, the frightened soul. Yet the fighting soul.

 

Because it gives Hope.

 

Hope, that thank GOD, when you dissect this forum you find Hope & Healing.

 

Thank you so much for sharing your delightful journey.

 

Q

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I needed to hear / read this so bad today. While I would love to hear more details on some of the therapies and medications you used. I really appreciate the story as well. Bless you and your lovely family.

 

Dedee

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Awesome news and so happy for your family!!!! Can you share which antibiotics Dr. J. used for the lyme/bart. Thanks so mucH!

 

When she was diagnosed with Bartonella, Dr. B put her on a daily combo of Zithromax and Bactrim. Dr. J. continued with that. When Dr. J suspected she also had Lyme in spite of the negative test results. So he added a Cyst buster, Tindamax, on weekends. That is when she was able to start pushing through the last 5% (and after adding that, her Lyme tests eventually came back positive).

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Love hearing stories like yours. Thank you for sharing. Just one question for you... Did your dd have any type of professional therapy to help get past OCD and anxiety or did it just kind of go away on its own?

At the very beginning of this, after taking her to the pediatrician (and being prescribed Celexa (SSRI) within 15 minutes), we also got a therapist referral. We did not fill the script. We called the therapist. She told us about PANDAS and suggested we test for strep. But when the throat culture came back negative, she concluded it was not PANDAS. (that's a side note).

She went to the (CBT/ERP) therapist and we did diligiently did the homework for a few months. Initially we thought there was improvement, but after a few weeks she just continued to get worse. Every item she got over was replaced by three more.

We were just about to try the Celexa when we learned her friend (who was also experiencing PANDAS symptoms...but tics, bedwetting, separation anxiety), we did the Cunningham test and begged the doctor to try abx. Cunnigham test was high in the PANDAS range and she started improving on day 11 of the 14 day dose.

Cutting to the chase...we continued the ERP with her...but really, the stuff started melting away once she really on the antibiotics.Eventually we stopped the formal therapy. We continued to use the tools a little bit here and there if there was a blip.

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I needed to hear / read this so bad today. While I would love to hear more details on some of the therapies and medications you used. I really appreciate the story as well. Bless you and your lovely family.

 

Dedee

Hopefully my other posts tell you a bit more...but my son also had the Lyme and Myco P...major food allergies as well.

His combo was Bactrim, Biaxin and Tindamax (pulsed).

 

For supplements...Sacchoboulardi and Culturelle. My son also took Vitamin D (he was deficient)

 

Now, based on the advice of Dr. H (my LLMD here in MA), I give both of them EpiCor Immunity Plus to keep their immune systems strong. My son continues to to take Vitamin D. By daughter also takes L-Glutamine for her stomach. Toward the end of her 3 years on abx, she started complaining of stomach aches. It had never been a problem before. In some ways I think it was a sign to us to stop treatment...we were hemming and hawing for several months. Dr. J's theory is to treat until two months after all symptoms have stopped.

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Thank you so much, you are giving me shivers! You must be so very, very proud of her. And to have helped her the way you have, you deserve your own award. So many suffering children out there will never know what they are dealing with - your daughter is lucky to have you as her mother.

 

We too have reached the point in healing that you have, although DD remains on low dose herbal treatment for her infections.

 

She is one of the top students in her class, although not 95+ (I'm not sure that's possible if she inherited any of her intelligence from me :), her father is pretty smart though.). Her principal called the other day to say what a wonderful child DD is; respectful, happy, caring, studious - that she was a joy to have at school. I truly believe that everything our children have been forced to endure forges them into incredible, empathic individuals when they emerge on the other side.

 

Isn't it wonderful to see just what our children are capable of when not dealing with the effects of brain-impacting infections!

Edited by rowingmom

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Awesome news and so happy for your family!!!! Can you share which antibiotics Dr. J. used for the lyme/bart. Thanks so mucH!

 

When she was diagnosed with Bartonella, Dr. B put her on a daily combo of Zithromax and Bactrim. Dr. J. continued with that. When Dr. J suspected she also had Lyme in spite of the negative test results. So he added a Cyst buster, Tindamax, on weekends. That is when she was able to start pushing through the last 5% (and after adding that, her Lyme tests eventually came back positive).

I am VERY interested in this comment!!! We (and doctor) suspect Bartonella in my dd (8) but have had all negative test results so far.... In fact, all we've come up with is elevated myco-p to date. She had such severe ocd that resulted in extreme fear of choking/swallowing that she basically didn't eat for the past 8 months. We finally added minocycline to her protocol of azithromiacin and bactrim, and on day 12 she started eating! Most of her behaviors have diminished, but she still has the "5%" or so residual effects... What is "cyst buster"?!?!? And "tindamax"?!?!? And how did you finaly find Lyme???? Igenix? We haven't done the igenix testing yet... Our insurance doesn't cover it, and I can't afford it right now.... But I would REALLY like to pursue this path with complete confidence (although I know she has PANS, and so does her doc!). Thanks for your post! I'm so happy to hear good news. This disease an be so bleak at times....

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Beerae- if the mino worked so quickly, I think that points to pandas IMHO. My daughter has done well with mino and/ or steroids- but for the last 2 yrs she has been stuck at a frustrating. 90-90%. We recently added 5 mg prozac (low dose) and she has been holding at 100-110%.

 

I would give the mino a little longer to do its magic- but if she is not getting to 100%, u might consider. We have found it to stabilize and lift mood- which has made everything else fall into place.

 

Rejoice in the progress you have made!

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Hi Kara,

 

So happy for you and yours. I believe it was you who first helped me over a year ago. We first met online at the OCD parenting forum. It is Janice from Alberta. My son recently got to baseline...6 years after onset and YOU are a huge part of that. THANK YOU. That is so inadequate... When I get some time I will sent you an email.

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