What progress have you seen lately?

[SSS]

Through all the die off and treatments, it can get discouraging at times.

Wondering if you'd care to share some gains made?

 

Here are some of our recent developments:

1.) Dd7 had to go for a blood draw 3-4 weeks ago, I absolutely dreaded telling her, afraid of the known OCD kicking in around it, (awful) so put it off until 1 day after school, before going to labcorp.

I screw up the courage, tell her, and she says:

Okay.

Okay?! (me)

Her: Yeah, okay. (and then just fine and quiet)

Get there, I no longer have to sit her on top of me, does it by herself, no fuss, no muss.

2.) She is doing well in 2nd grade, and finally moved up to chapter books last week (no pictures) and reads them every day!

3.) Is ready to take a shower all by herself without me- I am teaching her how now. (I could tell you a blood curdling phase where she refused water on her previously.)

4.) In the last month or two, she now goes to the restroom all by herself. Every single time previously at home, either myself or her father had to accompany her. EVERY time.

She now takes care of all her own business in there (cleaning) without either one of us.

5.) Also now dresses herself without me in the a.m.

 

So yes, we are having our 'spells', but here is some very good recent progress.

[Dedee]

That is really great news to hear! Thank you for sharing. Gives me hope. I look forward to the day when I don't have to coax my daughter out of her locked room to get her in the car to go to the doctor!

 

Dedee

[sf_mom]

Older DS:

 

1. DS can get sick and show a normal immune response - NO increase in PANS type symptoms

2. He lives a normal life. No one would know he was sick or suffered from PANS

3..He has two symptoms: Sighing or air hunger, complained of headaches/wasn't feeling well after starting homeopathy for bartonella

 

Younger DD/DS:

 

1. Still work in progress but no longer considered ASD and meeting all their age appropriate mile stones.

 

Family:

 

WE ARE GETTING OUR LIVES BACK!!!

[LNN]

Went to DS's open house at school last night. Three teachers this year, not just one. Getting ready to have our "meet & greet" meeting where I tell the teacher(s) about DS's history...

 

I'm actually finding it hard to figure out what to say. The tics, the bad OCD, nearly all the symptoms are either gone or so low level compared to years gone by that I almost feel foolish bringing it all up. Except that there's still ground to make up and still the chance for a flare, so they need to know what to look out for, what skills need shoring up...But for the first time, I don't think I'll spend more than 2 minutes talking about the bad times because DS has put so much of it behind him.

 

Like Wendy, we're not done. You know that. But mile 18 is sooo much prettier than mile 1 in this marathon.

 

As for DD - some mild anxiety over "no one" playing with her at recess (BFF moved to school in next town). But devil child is locked away in Tanzania and DD is overall doing really well.

 

As for me, I'm in week 2 of being on the treadmill and am trying to get serious about a project I've had in my head for years. I actually have time and emotional energy to invest in me. Go figure.

 

And you? Have you gained any weight back? Sleeping any better? How's GB pain?

[SSS]

Went to DS's open house at school last night. Three teachers this year, not just one. Getting ready to have our "meet & greet" meeting where I tell the teacher(s) about DS's history...

 

I'm actually finding it hard to figure out what to say. The tics, the bad OCD, nearly all the symptoms are either gone or so low level compared to years gone by that I almost feel foolish bringing it all up. Except that there's still ground to make up and still the chance for a flare, so they need to know what to look out for, what skills need shoring up...But for the first time, I don't think I'll spend more than 2 minutes talking about the bad times because DS has put so much of it behind him.

 

Like Wendy, we're not done. You know that. But mile 18 is sooo much prettier than mile 1 in this marathon.

 

As for DD - some mild anxiety over "no one" playing with her at recess (BFF moved to school in next town). But devil child is locked away in Tanzania and DD is overall doing really well.

 

As for me, I'm in week 2 of being on the treadmill and am trying to get serious about a project I've had in my head for years. I actually have time and emotional energy to invest in me. Go figure.

 

And you? Have you gained any weight back? Sleeping any better? How's GB pain?

 

 

 

Ahhh, LOVE to hear it everyone!

Thanks for asking, LLM-

I've passed a year of full on treatment, more to go for an old chronic like me,

but, I will say my brain fog is better,

just recently got back to exercising daily, which feels wonderful- for months I was just too fatigued, and I have put on some weight since exercising.

I go through my 'stuff' on this path, but I also tend to push the envelope with herbs and antibiotics, treatments for myself - but detox well, too.

Sleep is still a come and go.

xxoo

[Suzan]

Really great gains! Contrats!

 

The buzzing in my back and head is finally GONE! (knock on wood ) and all of my bad lyme symptoms are gone. But you probably were asking about the kids

 

 

dd11's pain is GONE! Emotional outbursts don't last all night anymore.

dd9 eats more than a teenage boy (seems like it anyway)...had perfect attendance last year! Not sick once. She can read and write now.

 

There's lots more for us I'm sure but those are some highlights. We are busy stirring things up right now and I know things can ebb and flow but we have many happy stories to share!

 

Susan

[JuliaFaith]

Soooo good to hear of your gains! May they continue and no longer be an issue sooner rather than later.

 

My ds14 has been thru a bunch of healing in the last 1 1/2 yrs. He was actually beginning to feel better for 6 weeks after ending viral treatment. First time in over 2 yrs.! The difficult part was putting the brakes on a bit to keep injuries to a minimum!

 

Still working on PANS but hopefully done with lyme and babesia! Will see..

 

Looking forward to hearing more of your progress.

[MamaOnAMission]

None. Things continue to get worse and worse with no break in sight. Sorry to be a downer but have no body else to vent to. AND I rarely get a response to ANY question I post. Guess people are sick of nothing working for us!!!!

[JuliaFaith]

None. Things continue to get worse and worse with no break in sight. Sorry to be a downer but have no body else to vent to. AND I rarely get a response to ANY question I post. Guess people are sick of nothing working for us!!!!

So sorry to hear this! You have been thru a lot over many years. We have continued to try to find what is going on with my son. It has been over 2 1/2 yrs. but we have found and treated many things. We are still treating and trying to find all the pieces of the puzzle. You are working on it and finding out some things so you are doing great with what you know. Keep looking and treating.

 

Just a few suggestions:

 

You may want to give some background info. on your signature line so you do not have to spell it out with every thread but would give others some background from which to come up with ideas.

 

Dr. Shoemaker genetic testing...this testing told me that my son will not heal on abx alone which was helpful since son is seeing an ND now.

 

Have you been checked for lyme etc.?

 

Keep asking questions on here. If no one is answering, re-word the question, give some more info. until question gets answered, keep trying. Persistence is necessary in getting your family well.

 

Look forward to seeing your posts.

[sptcmom]

DS 10 has made consistent progress since diagnosed with Aspergers age 22 months, CRMO at 7 yrs, PANDAS age 8 and since then Lyme, babesia microti, babesia duncani, mycoplasma, bartonella, Rocky mountain spotted fever, failure to grow, vitiligo,and multiple genetic mutations for detox, whew!

 

Currently- Normal immune response- no PANDAS, Has cleared Aspergers, socially normal, normal in school, 5th grade, growing ! still in 3rd percentile but on the chart!, genetic markers toned down thru epigenetic treatments, detoxing ok now, no anxiety, no OCD, no seperation anxiety.

 

We did regression hypnosis and traced his seperation anxiety to my horrendous labor and emergency C section. Once we resolved those buried fears he's been great!Sleep normal, Language normal, learning to be assertive- work in progress.

Recently had a huge Babesia flare after a really bad bug bite and had his pelvic osteomyelitis (CRMO) again. But Mepron resolved it. Still on Mepron, Homeopathic and herbal maintenance program now. I will continue Mepron for minimum 6 months at this point.

 

DH and I are on an entirely herbal and homeopathic regimen and doing well with clearing the infections, cognitive and physical symptoms. My Aspergers has cleared too after all these years as has my OCD and anxiety. Hoping to keep my cleaning OCD. That ones been helpful.

 

Psychological healing work has helped all of us. Mostly unconventional methods! lol.

 

As you guys may know I have been blessed to have been able to train with the best of the best and helping so many families in my practice. Will present some of those protocols at ILADS in a couple months.Limited time but will try to cover whatever I can cover keeping the stringent ILADS guidelines in mind. Should be fun.

 

Had a weird kitchen accident with a knife that got away and sliced three tendons of my right hand! yikes! Anyways had hand surgery and recuperating. trying to be lefty. Please overlook typos.

Please don't lose hope. There are so many conventional, unconventional, just plain out there sounding methods. We owe it to ourselves to look into everything, research and see if thats something that can help our families. Please keep trying.

I am glad I listened to some of the brilliant moms on this forum. SF mom- will never forget your help and advise, ever.

[sf_mom]

DS 10 has made consistent progress since diagnosed with Aspergers age 22 months, CRMO at 7 yrs, PANDAS age 8 and since then Lyme, babesia microti, babesia duncani, mycoplasma, bartonella, Rocky mountain spotted fever, failure to grow, vitiligo,and multiple genetic mutations for detox, whew!

 

Currently- Normal immune response- no PANDAS, Has cleared Aspergers, socially normal, normal in school, 5th grade, growing ! still in 3rd percentile but on the chart!, genetic markers toned down thru epigenetic treatments, detoxing ok now, no anxiety, no OCD, no seperation anxiety.

 

We did regression hypnosis and traced his seperation anxiety to my horrendous labor and emergency C section. Once we resolved those buried fears he's been great!Sleep normal, Language normal, learning to be assertive- work in progress.

Recently had a huge Babesia flare after a really bad bug bite and had his pelvic osteomyelitis (CRMO) again. But Mepron resolved it. Still on Mepron, Homeopathic and herbal maintenance program now. I will continue Mepron for minimum 6 months at this point.

 

DH and I are on an entirely herbal and homeopathic regimen and doing well with clearing the infections, cognitive and physical symptoms. My Aspergers has cleared too after all these years as has my OCD and anxiety. Hoping to keep my cleaning OCD. That ones been helpful.

 

Psychological healing work has helped all of us. Mostly unconventional methods! lol.

 

As you guys may know I have been blessed to have been able to train with the best of the best and helping so many families in my practice. Will present some of those protocols at ILADS in a couple months.Limited time but will try to cover whatever I can cover keeping the stringent ILADS guidelines in mind. Should be fun.

 

Had a weird kitchen accident with a knife that got away and sliced three tendons of my right hand! yikes! Anyways had hand surgery and recuperating. trying to be lefty. Please overlook typos.

Please don't lose hope. There are so many conventional, unconventional, just plain out there sounding methods. We owe it to ourselves to look into everything, research and see if thats something that can help our families. Please keep trying.

I am glad I listened to some of the brilliant moms on this forum. SF mom- will never forget your help and advise, ever.

 

 

Geez Sptcmom.... Its nice to see your update!

 

As you know, we've all learned a lot from each other over this much longer than expected journey. I often imagine all the thank you's owed from Dr. K who even speculated chronic infection verses auto-immune with me several afternoons while my son got hdIVIG treatment, to DP who told me this was an illness that we could do something about, to my father-in-law who is an old school Dr. and helped me slog through medical research, to the inventors of the internet. It is our shared experiences and I mean truly 'shared' experiences that is getting our kids well and hopefully others to follow. It is unbelievable but I now have a team of Dr.'s who believe in the notion of infection triggered mental illness and not pure genetics or auto-immune: a DAN, 2 LLMDs that look at the issue slightly different while both adding value, a biomedical dentist, a osteopath, etc.

 

Anyway, I wanted to attend ILADS this year and hear you speak... along with Dr. T on PANDAS and all the other speakers. Unfortunately, I just can't make it but am already hopeful of hearing some good reports back. Good luck!!!

Edited September 26, 2012 by SF Mom

[tpotter]

None. Things continue to get worse and worse with no break in sight. Sorry to be a downer but have no body else to vent to. AND I rarely get a response to ANY question I post. Guess people are sick of nothing working for us!!!!

 

Lilly, I'm so sorry to hear things are getting worse. What have you tested for? As you can see, so many of us have multiple infections and triggers (lots of different infections, immunizations, etc.) Many of us are combining eastern and western meds, plus doing homeopathy, acupuncture, chiropractic, etc., etc. I know with my family, that's what's helped the most. Right now, we are having some issues with DS16 (herxing, and a major mold problem in the house, which seems to be affecting him in so many ways,) but DS19 seems to be mostly holding his own at college, and is studying to be a Rocket Scientist (literally!) Now, if he would just stop putting all the poison into his body (Monster and Mountain Dew) But, he knows, and understands that the vast majority of his issues at this point, appear to be self-induced, and as an "adult", I have to let him make his own mistakes.

[Christianmom]

Since my son's ONLY symptom has and continues to be severe OCD, the most improvement I see is in him doing fewer and fewer compulsions. Less compulsions has of course led to much of his OCD either going away or becoming much more mild.

 

Things that he can do now that he couldn't before treating lyme in January of 2012:

1. Playing the piano normally. (Couldn't touch the piano when at his worst.) Played a difficult piece for a recital recently.

2. Touching water normally for the most part (water was a big OCD trigger before).

3. Showering normally (no more 45 min. showers).

4. Able to do simple tasks pretty flawlessly. Interesting, it was the little tasks that would set his OCD off the most in the beginning. Now, he thinks nothing to wash dishes, vacuum, clean something, etc.

5. Able to write normally. At his worst, he was unable to write because of severe OCD. Even signing his name was a chore.

6. Able to do DIFFICULT math fairly normally, though still working on this.

7. ABLE TO PASS HIS LEARNER'S PERMIT!!! Had no interest in even trying before.

8. Able to ride roller coasters again. This was a big, big step for him because he has always had somewhat of a fear of heights. He hadn't even been on a roller coaster since being ill--didn't even want to try before.

9. Sleeping normally. At his worst he would toss and turn for hours with severe OCD.

 

Still struggles, however, with any difficult task (like school) that he has to do alone. He can accomplish difficult tasks fairly easily if I am sitting with him, but his OCD is set off when I leave. I am slowly having him do more and more schoolwork without me.

 

He still has MANY compulsions, though he is working through them everyday. He is able to "let his OCD go" much more now. Before lyme treatment he had no control over his OCD at all. It was "24/7" as he described it to us.

[KaraM]

I've been wanting to respond to this for a while and finally have both the time and the energy. It's so great to hear stories of improvement. I feel and pray for those of you who are still not getting results.

 

Two and a half years ago, my dd frequently wished aloud that she wasn't alive. One and half years ago my dd asked by dh to kill her. The other day...she said she wanted to be 10 forever.

OCD that was at one point completely interfering with her ability to go to school, to play with her friends, to eat, to sleep, in other words, to LIVE, is gone.

She's happy, engaged, wants to be involved in things. She hugs me. She gets dressed in the morning before coming to breakfast. She showers. She eats. She gets to school and gets there on time. She does her homework without melting down. She plays with friends. She is living!!!

 

For the past few years, DS would always complain of not feeling well: sore throats, stomach aches, body aches. He also complained of always feeling either very angry or very sad (and he acted that way as well).

He hasn't been sick in months. He's swimming on a swim team, acting in a play, getting along with other kids. A huge improvement all around.

 

We've only treated with oral antibiotic combinations, including cyst busters, probiotics and some minor detox. No IVIG or PEX. It did not improve overnight. It's been a slow road, with many ups and down. But I am optimistic that we are close to the end of this journey. (And I really hope I'm not tempting fate, here.)

 

I feel like I'm making up and down progress...sometimes it's so hard to tell...and it frequently changes. If anything, I'm better because my kids are!

 

Kara

[LNN]

 

I feel like I'm making up and down progress...sometimes it's so hard to tell...and it frequently changes. If anything, I'm better because my kids are!

 

Kara

 

:wub: I'm so happy for you guys!! Especially that DD gets to experience life without OCD again. You guys have had such an incredibly hard journey. I hope your own recovery is just around the corner - maybe a nice Xmas present?!