Continued progress!

[laure]

Hi All,

I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness.

Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing.

Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet.

Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon!

Laura

[NMom]

I'm so happy to hear that your daughter is doing well! It's always great to hear good stories. We are embarking on the Lyme/co-infections route right now. I'd love to know who you take your daughter to see and if you like him/her? We live in Houston so will be traveling no matter where we go. Feel free to PM me. Thanks and I pray for continued improvement/success for your daughter.

[JAG10]

Hi Laura,

 

This is fantastic!!!

 

I'm sorry, I don't remember your dd10's hx, but I'm going to assume if she at one point in time had a pandas dx that you had some evidence of strep and behaviors? After you are done dealing with those underlying infections, do you have a plan of attack for when she is exposed to the viruses and/or strep again? Will you treat with abx and possibly steroids if the autoimmune arm becomes active again?

 

Thanks so much for sharing your success and excitement! I was just sharing with some friends how my dd11 is devouring books lately, it's amazing. And my younger dd8 also completed a biome project (diorama of pacific ocean). I bet you are happy to play her board game with her anytime she wants!!

 

Kudos to you for getting the job done. It's not an easy or well-paved or well-lighted road, but you made it anyway!!! She's so lucky to have you and you to have her.

 

Congrats!

Jill

[MomWithOCDSon]

Fantastic news! So glad your DD is recovering so well these days! Thanks for sharing your story.

[Iowadawn]

Love those biome diaramas!! Our pandas/lyme ds12 6th grader, who had a VERY fragmented last 2 1/2yrs of school completed a polar diarama this year!

 

Your story gives me continued hope, Laure.

[hawks]

So glad to hear of your continued progress!

[norcalmom]

Laure,

Thank you for sharing this! I've recently started a new antibiotic with my son, recommended by the LLMD. Previously I've been on the fence about Lyme. Not that I don't think it can cause pandas - I absolutely do - but that my son's test results are mixed, and pretty much the only way he cold have gotten it is from me (I have not symptoms - but I don't rule it out since my sister had Lyme, and I pulled plenty of the same tics she had off me growing up).

 

Anyhow, the new antibiotic - CEDAC seems to be working. It crosses the BBB and has some other properties that the antibiotics he's been on for 2 years don't (azith - which he is still on)

 

We've done 2 rounds of IVIG (7 mos apart). He's much, much better and I've no doubt that he needed the IVIG to get to this point. The LLMD also supported the IVIG.

 

Can you share more about what you pandas story was, and how things progressed from where you were 5 months ago to today?

 

Thank you!

[laure]

Laure,

Thank you for sharing this! I've recently started a new antibiotic with my son, recommended by the LLMD. Previously I've been on the fence about Lyme. Not that I don't think it can cause pandas - I absolutely do - but that my son's test results are mixed, and pretty much the only way he cold have gotten it is from me (I have not symptoms - but I don't rule it out since my sister had Lyme, and I pulled plenty of the same tics she had off me growing up).

 

Anyhow, the new antibiotic - CEDAC seems to be working. It crosses the BBB and has some other properties that the antibiotics he's been on for 2 years don't (azith - which he is still on)

 

We've done 2 rounds of IVIG (7 mos apart). He's much, much better and I've no doubt that he needed the IVIG to get to this point. The LLMD also supported the IVIG.

 

Can you share more about what you pandas story was, and how things progressed from where you were 5 months ago to today?

 

Thank you!

 

 

My Dd 10, the baby of the family, siblings 20 and 18. Normal enough through toddler years, she first became oppositional (spoiled according to family members) then began to seem ADHD, and by age 7 had some OCD contamination stuff, mainly toilets and public bathrooms. Again, we concluded allergies, possible hypoglycemia, some genetic history, grandfather OCD, Mom a little hyperactive, etc. Then overnight PANDAS explosion July 2010. Hopping on one foot, showering 8-10 times a day, or not at all for weeks at a time, can't bring school stuff home or home stuff to school, can't play with any toys, we can't touch her, etc. Anti dNase B titers high, strep just a little high. Local doc gave short course of abx, saw improvement right away, but then huge backsliding in August. Got appt with Dr B, who again rescued her with abx in Sept 2010, but also he found lyme bands via Igenex in Nov. He said she had lyme for over a year prior. Moved on to lyme doc from December through May 2011, (Dr. J) but no improvement, and then PEX/ Ivig became the only solution according to both these docs. Once again moved on to ART doc used by some on these forums, who clinically diagnosed bartonella, babesia, ehrlichiosis, rickettsia, XMRV, borrelia (we were shocked, she was still sort of functioning). Now 5 months later, after very aggressive abx and herbal medicine, we have a child that we do not know. Not only happy, but popular with friends, cooperative, studious, motivated. Brought home her first 100 on a math test yesterday, (high math group in school), was asked to play on the boys soccer team, reading again (she hadn't read in nearly a year). I know there are huge debates re: PANDAS or Lyme... The docs know she had lyme. We know she reacts PANDAS-like to strep/allergies/colds with increased OCD. But getting after the lyme has reduced all of the PANDAS symptoms, while the reverse was not true.

[laure]

Hi Laura,

 

This is fantastic!!!

 

I'm sorry, I don't remember your dd10's hx, but I'm going to assume if she at one point in time had a pandas dx that you had some evidence of strep and behaviors? After you are done dealing with those underlying infections, do you have a plan of attack for when she is exposed to the viruses and/or strep again? Will you treat with abx and possibly steroids if the autoimmune arm becomes active again?

 

Thanks so much for sharing your success and excitement! I was just sharing with some friends how my dd11 is devouring books lately, it's amazing. And my younger dd8 also completed a biome project (diorama of pacific ocean). I bet you are happy to play her board game with her anytime she wants!!

 

Kudos to you for getting the job done. It's not an easy or well-paved or well-lighted road, but you made it anyway!!! She's so lucky to have you and you to have her.

 

Congrats!

Jill

 

Hi Jill,

I summarized her journey below in another response. To answer your questions, she was always asymptomatic for strep, as are all of us in our family, at least most of the time. She would get a few pimples around her mouth or a rash on her belly, but nothing else. She had strep about 4 or 5 times in her childhood that we knew of and treated. Her PANDAS-like symptoms really ramped up 5 months prior to the overnight episode, one symptom included needing to pee every 15 minutes, and she actually really produced a lot of pee each time - it was strange. I thought allergies at the time, because that is sometimes a symptom, as the body tries to rid what it thinks are toxins (foods allergies). Also she was oppositional quite a bit of the time. We were considering having her try some ADHD meds. Thank God we didn't go that route or we would have really struggled for so much longer.

I don't have a real plan other than to continue to visit this doctor to rule out tick-borne illness at least yearly for the rest of her childhood (to age 18). She does recognize the "feelings" because now on tindamax she can notice them, while the other days they are not there (the OCD stuff). In that case I would waste no time getting her back on my hefty medicine cabinet supply of antibiotics...and getting her back to that doctor. I worry about her being on the strong triple cocktail she is on, but also worry about what will happen when she comes off it. We will never get another flu shot of vaccine (swine flu shot seemed to really ramp her up back before we knew what was going on). I would resist steroids unless all abx failed and this doc suggested that route. IVIG or PEX last alternative, but of course, if we ever got to that place again or worse, and this doc couldn't help us, then sure, we'd do that too. At least now we know who she is, who she can be, and can strive to keep her there, instead of that other sick kid that was living with us for 16 months...

[norcalmom]

Thank you!

 

So, you never got PEX or IVIG. Interesting.

 

And you haven't done CBT either?

[cidermill]

Laura,

 

I was so happy reading your post just now I wanted to cry. We are dealing with similar issues -- Lyme causing Pandas symptoms -- in my soon to be 7 year old son. He changed overnight in september and it's been a tough two months. Lots of crying. He is anxiety ridden now with panic attacks. He has a fingers motor tic too. It's killing me to see him like this.

 

Anyway, we're in NJ and I'd love to know which doctor you saw who really figured this out for her and put her on the aggressive meds.

 

I have our 2nd appt with our Infectious disease Dr. tomorrow and i'd love to know which meds she was put on/how long, if you'd care to share. I'd love to discuss that with him. My son has been on amox only and Im not seeing very much improvement.

 

again, congrats to you on getting your daughter back. I look forward to the day I can post wonderful news like that as well.

 

Christy

[laure]

Thank you!

 

So, you never got PEX or IVIG. Interesting.

 

And you haven't done CBT either?

 

 

No, she was scheduled for IVIG twice, but I canceled because she improved so much after seeing the ART doctor, even after just the first visit. So glad now. Also, I don't trust the blood supply, because I have read that babesia is in it. Don't need to keep re-infecting with that. So I had too much doubt about that as the only solution for her, although I would have done it if the ART was unsuccessful. I will say that my daughter was never sickly, always a robust, healthy child, so other than the neuro-psych symptoms, there was nothing physical telling me that her immune system really needed "re-booting" as the docs sometimes refer to IVIG as.

 

CBT also was not necessary, although lots of folks suggested it to me. Once the treatment took hold, all of those anxieties and behaviors just slipped away. I asked her about it once, the conversation went like this: "Sophie, did you just turn off the faucet without using your sleeve?" "Mom, I have been doing that for awhile." Me: "How did that happen?" Her: "I don't know, accidentally one time I just did it, and then I realized it didn't make me feel uncomfortable anymore."

[laure]

Laura,

 

I was so happy reading your post just now I wanted to cry. We are dealing with similar issues -- Lyme causing Pandas symptoms -- in my soon to be 7 year old son. He changed overnight in september and it's been a tough two months. Lots of crying. He is anxiety ridden now with panic attacks. He has a fingers motor tic too. It's killing me to see him like this.

 

Anyway, we're in NJ and I'd love to know which doctor you saw who really figured this out for her and put her on the aggressive meds.

 

I have our 2nd appt with our Infectious disease Dr. tomorrow and i'd love to know which meds she was put on/how long, if you'd care to share. I'd love to discuss that with him. My son has been on amox only and Im not seeing very much improvement.

 

again, congrats to you on getting your daughter back. I look forward to the day I can post wonderful news like that as well.

 

Christy

 

 

PM ing you Christy.

[AmySLP]

Laura,

I'm tearing up reading your daughter's story. I remember how bad she was last year & how desperate you were to find treatment. My daughter is doing well with treatment for co-infections as well. For the first time in 3 years I can say she is symptom free of tics and the OCD anxiety symptoms that were starting to creep in. My daughter was definitely on the mild side, but I will never doubt that it is because I found this forum and got her dx. & tx. so early. Your daughter's story is one so full of hope for kids who have been lost to neuropsychiatric disorders caused by infections. We went to the local media to share our story & it will air in Binghamton on WICZ fox 40 on Nov. 23. It will be available on the their website after 7 pm that night. ANother family that we know, whose daughter is close in age to yours, will also be featured. SHe was much more severe & has total turn around too after ABX & IVIG. It should be an amazing story!

 

You have so much to be thankful for this Thanksgiving!

 

Amy

[mtmom]

I am so glad to hear that your daughter is doing well. Thanks for sharing your great news.

 

I am new here and not certain of the abbreviations. What is a ART doctor?