mommakath

I sent you a PM, Katie. There's help nearby.

I sent you a PM, Katie. There's help nearby.

I messaged you a name.

This very question is what kept me from pursuing PANDAS earlier. I mean, it had been 4 years with OCD diagnosis from top OCD clinic. No mention of PANDAS even though one of researchers on staff there. It was friends who had heard all of the PANDAS speakers at OCF Conference that convinced me to rule it out. I've had 3 other docs confirm - PANDAS - and the treatement we have chosen has made a huge difference. In hindsight, it is clear our child changed in a matter of days - DD always had underlying minor quirks and 4 years of noone knowing what was happening, but there was a day it all changed for her. As quickly as she'd get bad, she'd get better. There may be weeks or months of an exacerbation. Once here, it was here. Once gone, gone! Periods of ZERO symptoms. Today, 2 years into antibiotics, 10 months into IVIG, and 2 months into functional medicine, we are GREAT! Same for DS who was diagnosed within a year. It has been a long, long journey and we may not be at the end....yet. But, staying where we were 2 years ago would have been awful! I am SO VERY GRATEFUL for my OCD Mom friends that we met at the OCF Conference 3 years ago......they have saved us.....by encouraging us to keep turning over stones. We may be broke, wrinkled, gray, BUT we have each other and we are gaining our health back. God is good......So, I way, rule it out!!

I'll chime in behind LLM and say that my son is compund heterozygouse for MTHFR. Here's what's helped us with this issue: Deplin, Methyl B12 injections, scheduled to add in 5HTP, DMG, and magnesium with a little calcium, omega's, and good multivitamin. Source is important when dealing with a MTHFR kid - organic and pure - and we have gone gluten free and dairy free. I would advise finding a physician who specializes in this to help you out. Our son is also getting IVIG and on antibiotics. There are certain RX you should avoid with this mutation (Bactrim, Sulfate). The MTHFR is not the golden ticket that heals but IF THEY ARE MTHFR POSITIVE it is almost a golden ticket!! In our case, it's not been one thing that has been the answer, but a combination of things.......the Pandas, Lyme, and Functional medicine doc all working together. It can be an important piece of info and has really been a huge part of us getting better.

I just want to add that I would suggest testing your child for methylation issues - test vitamin levels, for MTHFR chromosonal defects - as we have done PANDAS treatemnt, Lyme treatment, IVIG, and Cunningham testing - all testing positive and we have seen unsustainable results. We most recently uncovered the MTHFR mutation and are supplementing with METHYL folate and METHYL B-12, D3, and still on all lyme and pandas meds. Unitl we added in the supplements to supprt METHYLATION, we had lost our son again for no explainable reason. We have now had a complete turn around. So, getting to the bottom of it all for us has required an immunologist, lyme pediatrician, and functional medicine doctor (our happens to be a DAN Autism doctor - we are not austistic - she just thinks out of the box and knows nutrition and supplements). Feel free to PM me with any questions. Know this.....it always gets better!!

We're just starting down this road and our DAN ordered MTHFR, Vit A, Vit B12, T3 free, T4 free, Folate, Lipids, some other special tests I don;t have back yet but can PM to you when I get them, stool and urine. I can say that we are seeing results after two weeks of adding in vitamins, omega 3's and deplin, diflucan, and D3. We are starting very small doses, titrating up, keeping journal and going GFDF. I'm ready to stand on my head and spin in cirlcles for 3 days if it will help - and hold. Know what I mean? Best of luck.......from all I've read and heard, this can be key in these kids. Our DAN healed her daughter! That's my goal for my kids!

OKAY…got some interesting blood work back today as I am on my quest to see why we have lost my son again after successful PANDAS and Lyme treatment and no symptoms for over 4 months. DS10 got exposed to strep and hasn’t come back yet. So, he went from wanting to kill himself he was so miserable, to 100% complete turnaround for 5 months after IVIG, to skydiving off the cliff and losing all gains after being exposed to strep. Changes in meds, yeast treatment, IVIG, stopping meds and etc. to no avail. There was a 50-60% gain after Cipro for a month and IVIG #5, but we are still fluctuating daily and no where near the 100% we had. So, in my journey to find health for my son again, I turned to a DAN, functional medicine Autism doc, (even though we are not autistic) who happens to be ‘much more local’ than our PANDAS and Lyme docs. We are adding her into the mix to work with them as I needed a pediatrician who could handle this unique disease. She is working on bringing IVIG into my home (versus monthly trips up north) – this was my main reason for seeing her. But, God has used her to unravel other layers to the onion. Please allow me to share with you……. As found in many autistic kids, and she is finding in many PANDAS kids, she suspected a methylation issue. Looks like she is right on. This leads to glutamate issues and etc. Our bloodwork confirmed a MTHFR mutation, which interferes in this whole process. So, this may be the answer to a lot of the issues we face. It may not fix it all, but it is a breakdown in the body that can’t be ignored. Without the ability to make methyl B12, sulfation doesn’t happen, detoxification doesn’t happen, and Neuropsychiatric Disorders result. Under the care of a knowledgeable doctor, these things can be fixed relatively easily by diet and supplementation. There are meds to avoid (like Tylenol and Bactrim DS) and we’ve been using those. So, for any interested, there’s a link from Dr. J’s website about MTHFR ( www.drjoneskids.com) – click on MTHFR down on the right side. Our DAN doc, Dr. Buckley, has written a book called “Healing Our Autistic Children” (http://www.juliebuckley.com/) that talks about a lot of this – highly recommend it – an easy read on my non-scientific level. I’ve always felt that we would not be as far along on this journey if we didn’t have others sharing their gains in knowledge with us – and their loving nudges in our sides to keep exploring and looking. For this reason, I share this with you. Maybe it’s the missing piece in your journey to wellness as well. I am thankful for each new little piece of valuable information that can heal my child(ren). I’ve always believed God gave these precious, unique kids to us because He knew we would never give up! Blessings to all!

OKAY…got some interesting blood work back today as I am on my quest to see why we have lost my son again after successful PANDAS and Lyme treatment and no symptoms for over 4 months. DS10 got exposed to strep and hasn’t come back yet. So, he went from wanting to kill himself he was so miserable, to 100% complete turnaround for 5 months after IVIG, to skydiving off the cliff and losing all gains after being exposed to strep. Changes in meds, yeast treatment, IVIG, stopping meds and etc. to no avail. There was a 50-60% gain after Cipro for a month and IVIG #5, but we are still fluctuating daily and no where near the 100% we had. So, in my journey to find health for my son again, I turned to a DAN, functional medicine Autism doc, (even though we are not autistic) who happens to be ‘much more local’ than our PANDAS and Lyme docs. We are adding her into the mix to work with them as I needed a pediatrician who could handle this unique disease. She is working on bringing IVIG into my home (versus monthly trips up north) – this was my main reason for seeing her. But, God has used her to unravel other layers to the onion. Please allow me to share with you……. As found in many autistic kids, and she is finding in many PANDAS kids, she suspected a methylation issue. Looks like she is right on. This leads to glutamate issues and etc. Our bloodwork confirmed a MTHFR mutation, which interferes in this whole process. So, this may be the answer to a lot of the issues we face. It may not fix it all, but it is a breakdown in the body that can’t be ignored. Without the ability to make methyl B12, sulfation doesn’t happen, detoxification doesn’t happen, and Neuropsychiatric Disorders result. Under the care of a knowledgeable doctor, these things can be fixed relatively easily by diet and supplementation. There are meds to avoid (like Tylenol and Bactrim DS) and we’ve been using those. So, for any interested, there’s a link from Dr. J’s website about MTHFR ( www.drjoneskids.com) – click on MTHFR down on the right side. Our DAN doc, Dr. Buckley, has written a book called “Healing Our Autistic Children” (http://www.juliebuckley.com/) that talks about a lot of this – highly recommend it – an easy read on my non-scientific level. I’ve always felt that we would not be as far along on this journey if we didn’t have others sharing their gains in knowledge with us – and their loving nudges in our sides to keep exploring and looking. For this reason, I share this with you. Maybe it’s the missing piece in your journey to wellness as well. I am thankful for each new little piece of valuable information that can heal my child(ren). I’ve always believed God gave these precious, unique kids to us because He knew we would never give up! Blessings to all!

Thanks for the replies. We have been doing Theralac for a while, recently upped to 2 a day. We have never had a yeast infection until now. How do I treat for parasites? I have searched for a holistic doc nearby to help and there are none that are taking new patients. And, certainly not one that knows anything about lyme. I ran him into the pediatrician today as I am really concerned and heard that it's gotta be the stomach with all the meds he's on. he started him on prevacid. I am thinking I want to take him off everything for a week or two. However, I realize I am not the one with a medical degree and years of practice here! Thanks again! Oh....LLMD said he did not think this sounded like a die-off; he's thinking more an infection not touched yet. Waiting on them to have a meeting of the minds and let me know the outcome!

Any ideas anyone? DS10 - PANDAS / Lyme / Bartonella / Mycoplasma - Diagnosed Pandas Sept 2010 / Lyme and Co's Jan 2011 - was really bad but got worse once we started Lyme treatment in January. Found him sharpening knives to take care of things in March 2011. Started IVIG every 2 months in April. Saw immediate improvement. Symptom free since June 2011- no titers for Lyme or co's. Last IVIG early October was 2 weeks late and OCD anxiety symptoms started creeping back in 2 weeks prior to this IVIG. Got worse afterwards. Happened to see LLMD and get blood drawn day after IVIG. Came back with increased strep titers (648 - his had previously been 8 and 50). Sed rate up and RMSF titers coming out. Added Augmentin XR 12 days ago to the cocktail ( Azith/Bactrim/Tindamax pulsed). Then noticed white on tongue, anal itching (sorry, but true) with redness, stomach aches, headaches, dry croupy cough. Had phone conf with LLMD -added in diflucan and niastatin yesterday. Well, today....bad....very bad! Aside from wanting to die, he is in severe stomach and bladder pain with headache. Is this normal with diflucan and lyme? My dd12 had similar feeling when she took diflucan. He has never had a yeast infection that I've known of. Waitin on docs to confer and call me back but I am concerned and wonder if I should recommend we stop all meds except diflucan? Any similar situations out there? Feel like we gained so much and now we are back to where we were a year ago! UUGGHHH! Poor Fella!!

We have had such success with antibiotics, probiotics, and IVIG. Now I am wondering about the need to detox? There are no alternative medicine types near me so I am trying to figure this out on my own. has anyone ever used the Bio-Botanical preducts? They have a BioClear cleansing program and a 3-day cleanse, GI Detox? Comes in drops as well so that's why I'm considering it. THANKS!

We have had great experience with IVIG for both DS10 and DD12. They do have Lyme, Bartonella, Myco, Pandas autoimmune issue, and both VERY high on Cunningham. We started lyme treatment and bombed. The IVIG is what saved us. It has been explained to me by both immunologist and LLMD that the IVIG does not help fight the lyme. It helps with the autoimmune issue that causes the brain inflammation - which is what the Cunningham test measures. I can tell u that our ds10 cunningham test before IVIG and after 3 rounds of IVIG are remarkably different - no swelling in brain in last Cunningham. I spoke with Dr. Cunningham at OCF conference and she was encouraging of IVIG and even said once her lab is opened, she believed insurance companies will cover IVIG for kids with positive Cunningham test. I know all kids are different and in our case, our immune profile backed up the whole autoimmune side of what we suspected. Perhaps this is why IVIG helps us so much. We were homebound and crazy before IVIG.

LLMD's office called today to advise me that insurance has requested my full, entire medical chart from them to see if they will pay for my initial visit (and that's 'pay' at whatever ridiculous amount they decide is r&c for out-of-network doc). They asked if I wanted them to comply since they are not a HIPPA participating provider. I have not responded one way or the other but understand this is not the norm - to ask for the entire chart. Has anyone else experienced this? I want to collect my thoughts and know my rights before I call the insurance company myself. Why would they need this?

LLMD's office called today to advise me that insurance has requested my full, entire medical chart from them to see if they will pay for my initial visit (and that's 'pay' at whatever ridiculous amount they decide is r&c for out-of-network doc). They asked if I wanted them to comply since they are not a HIPPA participating provider. I have not responded one way or the other but understand this is not the norm - to ask for the entire chart. Has anyone else experienced this? I want to collect my thoughts and know my rights before I call the insurance company myself. Why would they need this?

Okay...just wondering if this is really the good news I hope it is? DS10 positive for Bartonella in January. Started antibiotics, goes downhill quickly, becomes homebound to a degree, found sharpening knives to kill himself. IVIG April, June, August. June bloodwork through Igenex and Specialty showing zero Bartonella antibodies and few bands on Igenex become weaker or IND. Does this mean healing is taking place? He is a totally different child now and pretty close to normal. I am grateful for whatever it is!! :-)

I'm very happy to hear that they are considering and testing for these infections as a cause for PITAND/PANDAS but I do want to point out that it is still beneficial to see a good LLMD if you suspect Lyme at all. Lab results can be negative for various reaasons but a good LLMD is still willing to try treating (and see how the patient responds) if they feel that the symptoms and possible exposure look like Lyme or co-infections. ABSOLUTELY!! Hope I didn;t make anyone think otherwise!! It takes a team!!

I am so THANKFUL that the PANDAS presenters at the OCF conference this year were very matter of fact about ruling out all sorts of infections and causes of PANDAS - not just strep - they said the words lyme, lyme co-infections, and mycoplasma, etc... They are so forward thinking and really open to learning as they go. This will hopefully save a lot of OCD/PANDAS/PITANDS patients time in getting treated properly. And, the more this gets around, the faster the healing begins! I am so grateful for their willingness to learn and adjust accordingly. YEAH!!

We use Bactrim, Azith, Augmentin XR, and add in Tindamax on weekends. Just to share, our doc told us how he and his MD friend thought the way Tindamax ended up getting black label warning was ridiculous. Apparently the mice were put on 400 times the normal dose (or some way out over the edge amount). And, the article was published. So, he got the same mice and used 400 times the normal amount of penicillan and other antibiotics and got the same result they did with the Tindamax. He did not choose to publish the article but shared it with me.....and I'm sure all the patients that go on it. At some point, we all have to choose whether risk outweighs the quality of life present without using various meds. For me, I'm choosing the best life I can give my kids for the time they are alive!! These meds are giving my children back their life - for now!

Considering my two children have had IVIG with him I should know this, huh? Don't seem to have written down his dosing protocol....Anyone out there know it? You can PM me with answer. Thanks!

We have taken both of our OCD/ Lyme/ Bartonella kids thru Storch programs. They are incredibly talented group that can only help. The tools they give the kids, and parents, are valuable. They are very helpful getting insurance to pay, working out a deal if no insurance, and even had a Skype program that we have used when our kids need a booster. They are equipping kids to cope with their symptoms and it works! If you can swing it, do it! You will not be sorry! Katherine

Dawn, We have not sen him but he was highly recommended to us by Dr. J. Read his articles and one is impressed. I hear nothing but great things about him. We just happened to improve before we got to him. Considering all you have been through, it could only be beneficial. Katherine

We have used Dr. Storch and team as well.....VERY helpful and good! He does know of PANDAS but truly, the treatment is the same for PANDAS or not. We have treated 2 kids with him and one has PANDAS diagnosis beforehand and the other did not. CBT / ERP is still the protocol and incredible tools for the toolbox (even for non-OCD people like me!!). Can't say enought great things about Eric Storch and how incredibly "together" his whole staff is! I am so glad you all will be seeing him.....you will be glad you did it!! And, just as a side note, my kids turned out to have Lyme and Bartonella on top of it all. The skills they learned there, still incredibly valuable and used! Best Wishes!! Soak it all in!!