lfran
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Posts posted by lfran
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Surprise, surprise, DS10 (Lyme, possibly PANDAS) is homozygous for the C677t mutation. (He is normal for the other mutation they test for). We will start to supplement with the 5methylfolate and hope that makes a difference. He has been on b supplements and NAC for about 2 months and we have seen a lot of improvement with everything except tics.
So..I have read that C677t is pretty common (1.5 - 15% of the population, if I read the Quest results right) but STILL. Isn't it significant that our affected kiddos keep coming up positive on these? I also read to avoid Nitrous Oxide if you have this mutation. Dentists use it a lot for pediatric uses (and don't some teens use it recreationally?) It sounds like it can be extremely dangerous for this subgroup.
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Just wanted to say, since my DS10 started NAC about 2 months ago, he has improved enormously in his schoolwork. Getting a lot more done, and the quality has been greatly improved as well. Teacher keeps saying what a change she has noticed. Tics have varied -- some days increased, some days decreased.
In the Yale NAC protocol for their current study on tics and OCD, they started with 600 mg 2x day for 2 weeks, then increased to 1200 mg 2x day for 10 weeks. I think they took kids aged 8 and up, so that might be a reference point for dosages. (I think they are taking participants, if anyone wants to enroll. Not sure if you have to be local or not).
Our neurologist feels that NAC can affect biofilms (at least for Strep and Mycoplasma pneumoniae). So this could be part of a herx reaction?
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Can you please tell me laboratory and name of MTHFR test? I really want to get it for my DS. Thanks.
One of my kids just came back for that. Now, please remind me, what do we do about it? Still waiting to find out if DS#2 is also
Also, I just googled it, and it says that it is very rare, and that only about 200,000 people have it. If that's the case, why do multiple people on this forum have it? Could it be significant?
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Igenex's Lyme DOT BLOT urine test is usually done while on antibiotics. My son was on abx for 3 weeks when he took the DOT Blot test. They recommend 3 samples, but we only managed two -- one on the last day of abx and one two days after the last day. The former one came back positive, which was sufficient. It is one of their less expensive tests, although it only catches about 30% of positives, is what I was told.
We had DS8 off antibiotics for 2 weeks, hoping to do the new borellia blood culture test after 4 weeks. Sadly, we didn't make it. It was a complete nightmare. We took him off on a wednesday. The very next day I got a note home from school about his aggressive behaviour. The day after that I had a phone call from the principal saying, "Has something happened? He's not okay." Well, we stuck it out for 2 weeks, during which time he became incredibly focused on his old obsessions and compulsions, germaphobia ramped up, we saw a return of ODD and aggression. He even became paranoid and violent. It was terrifying and I started having flashbacks of what life was like before we started lyme treatment 6 months ago. At the end of 2 weeks I couldn't let him out of my sight, for fear of what he might do. It was not a difficult decision to put him back on antibiotics. ON Wednesday he started back onto amoxicillin. I weaned him back up to his full dose (3000 mg/day) over 3 days. Yesterday and today he's back! He's calm, happy, helpful. He's not the same kid. It's freaking me out. Lyme wouldn't respond this quickly, and we haven't even added back his lyme abx yet, just amoxicillin. Is this bart (which we believe he also has)? Is it PANDAS/strep (He still has elevated ASO, although it is finally dropping after 2.5 years)? Could it be something else? I really wanted to do more testing this month, to get a better picture of what we're dealing with, and to get my PCP back on board with what we are doing. Maybe there are still some tests we can do with him on antibiotics. I just don't know what to test for. Any ideas on what this could be?
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Thank you!
Last year I found it helpful to reflect on what I had learned in our first year after dx. So here I am again – 2 years later.
-I’ve learned just how disappointing it is to still need to be here after 2 years!
-I’ve learned that I can get my son back - I saw it myself – unfortunately for all too brief of a time.
-I learned that placing your children in giant plastic bubbles to keep them from catching strep is apparently frowned upon by society.
-I’ve learned that being right all the time is very overrated – especially when it’s because you suspected your other child had PANDAS.
-I’ve learned that having an incredible medical team already in place and an early diagnosis doesn’t lessen the heartache of watching your other child slip away from this disease.
-I’ve learned that this disease can affect each child so differently that just when you think you’ve got it figured out – it throws you for another loop.
-I’ve learned that I have different (and higher) standards and expectations for my PANDAS daughter than my PANDAS son – and that’s not right. It’s something I need to work on.
-I’ve learned that apparently I will never run out of tears – of sadness, frustration or joy.
-I’ve learned that the marriage I discovered that strength in last year can be really tested when not tended to.
-I’ve learned that sometimes my husband can be smarter than me (only sometimes.) Just because he believes we should spend some time focusing on each other instead of PANDAS it’s not because he cares less about the children – it means he cares enough about them to want to give them the type of happy and stable home a strong marriage can provide.
-I learned that I’m still REALLY bad at taking time out for myself to recharge!
-I learned that there are a lot of people out there in the world trying to spread the word and gain awareness for this condition –and I’m thankful for that.
-I’ve learned that no matter what we call this damn disease – it doesn’t matter to my 4 and
5 year old who are suffering. They just want to get better.
-I’ve learned that I have an unreasonable hatred for black and white Chinese bears.
-I learned that no matter how much I learn about this – in the grand scheme of things I know nothing – and I have to keep on learning.
-I learned that for every time I question why God would do this to my children – I find my self asking him for the strength to carry on the fight to help them. And I find myself giving praise twice as often for the wonderful blessings He has given me in my children.
-I learned that the small things others take for granted become so much more important – like an unprompted “I love you mommy”, a hug, or simply eating dinner without having to have 4 of everything at the table!
-I’ve learned just how important it is for us to continue to come together to share our stories and experiences because helping just one child get through this – even if it’s not our own – is so rewarding.
-And I’ve learned that that kindness and generosity of folks who were strangers to me 2 years ago is endless.
Thanks again to everyone for their support and sharing. This community has been invaluable to our family as we continue to “fight the good fight”.
Here’s hoping next years post is all about what I’ve learned about “Life After PANDAS!”
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Can you direct me where to test for the MTHFR mutation? Labs, codes, costs, etc?
Thanks.
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!!
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For what it's worth, didn't President Bush throw up on the lap of the Japanese prime minister?
Also, would those wrist bands or other types of devices that help with nausea help at all?
And a question FROM me:
if my son has really really mild compulsions (no obsessions, I don't think) and the compulsions don't interfere with his life at all -- just like an extra tap here and there, or checking underneath the drinking glass once before he drinks (every time, but still, adds only about 2 seconds to his activity) would you still suggest finding a good ERP doc?
Thanks.
Philamom- So sorry about what you are dealing with!
I will give you my dd's story- take from it what helps....
DD had a sudden onset of pandas (we didn't know at the time, took us about 6 mos to figure out). A lot of her fears over the last three years have centered on getting sick/ vomiting.
Initially, she complained daily of stomach aches. Her stomach "hurt" when she was hungry, when she was eating, after she ate, when she needed to have a bowel movement, etc. We eventually (after lots of gi work, and an "aha" moment) realized that her stomach "hurting" was actually more of a sensory issue. Just like her sister became "sensitive" to clothing, she was sensitive to ANY motion in her digestive system. It is a chicken and egg question, but OCD wrapped tightly around this sensory stuff. She headed toward becoming agoraphobic. My once "always want to go out" kid did anything to stay home. She was afraid her stomach would hurt, or she might vomit, out.
Things eventually got better on their own.
Then she got sick the next year and the sh on toast hit the fan, so to speak. She had panic attacks every night. She would barely eat and would not leave the house. She spent much time in the bathroom, because the ocd told her she wouldn't vomit if she was in there. Things went from bad to worse, and we had pex.
The next year, she had a milder onset of pandas. We treated medically immediately, and most stuff resolved. She had one issue of fear of vomiting. Her fear went a little further- she was afraid she would vomit, people would see, and she would be embarrased. Initially, this was EVERYWHERE. However, things did calm down as we went places. But- it stuck at school. So much so that she basically missed half of the year last year. We worked with the school and a therapist. She had homebound instruction and at the same time we were slowly forcing her back to school, one period at a time. It was horrible. She would "white-knuckle" it through her time at school- panicked the entire time.
This summer we went to USF for three weeks of therapy. Our therapist was AMAZING. I cannot say enough about him. Basically, we were not doing the right thing for Caroline by just pushing her back to school one step at a time. We were kind of doing the response prevention with out the exposure maybe.
At Florida- she was EXPOSED to her fear, starting smaller and moving up. Everyday was uncomfortable (if it isn't uncomfortable, its not going to work)- yet not too much to bear. Our daughter was a little different, because in addition to the vomiting fear, there was the fear of embarrassment. After we did all of these things- she was fine. SHe went back to school with next to no anxiety, and within a week or two it was like she had never had the ocd. Amazing.
Here is what we did/ learned in FL:
She is afraid of throwing up and being embarrassed. Well, we cannot say for sure that won't happen. But what we do know for sure is that if it happens she will be able to handle it. People throw up in public, it is not fun, it is embarrassing, but they deal with it and move on.
OCD is an illness, like (lets say) cancer or diabetes. It sucks to have it, no question. But, thankfully there is treatment that we know works. Treatment is not optional. If she (dd) had cancer- she would not question the cancer doc and we would not let her decide if she gets chemo. We needed to start looking at ocd this way.
Her exposures, in this order (remember if they are easy, they are not the right ones, all of these were met initially with resistance from daughter). Say the word throw up. Say the word throw up to strangers. Write the word throw up. Look at photos of vomit. Look at photos of people vomiting. Look at videos of people vomiting. (Yes there are some great resources on the internet- youtube, vomit girl on you tube, and our favorite- ratemyvomit.com.) She writes a scenario of her vomiting in school. She writes a scenario of her vomiting in school and reads it to a stranger. She tells a stranger about a time she vomited at school, and they ask questions. Make fake vomit. Take a photo of herself with fake vomit on her shirt and hang it on her mirror. The culmitnation was making fake vomit and putting it on the floor of the kitchen in the hospital, and asking the receptionists to come see and clean up her vomit.
I am not sure if these are the correct exposures for your daughter, but they will give you some ideas. Our FL therapist was very blunt and honest with our daughter- which was refreshing and inspiring. We have not before, nor since, been able to find a therapist knowledgeable, experienced, tough and matter of fact enough for us.
I learned SO much. But, I will say that my daughter still needs a therapist to bring her through these exposures and not me. For us, it complicates things and creates arguments. When we have the doc laying out what needs to be done, I can follow through with her and she is cooperative. I think because she is smart and her age- she does not always take our word for things- but she much less questions a professional. Of course the therapist is not emotionally involved also. Our therapist was VERY matter of fact, this is no big deal, and I have seen kids with WAY worse issues than you....
I wish I could be of more help. I assume you are in Philly. Did I hear Drexel had a program? Personally, my advice would be not to fool around with an unproven psych. Get in contact with Dr Eric Storch at University of South Florida- I think he knows someone at Drexel. We spent six months fooling around with local inadequate psychs, when three weeks in FL did the job.
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But please note that you need to be off antibiotics for at least 4 weeks before doing the culture test, so since your child is on abx right now, that's something to consider.
You do not need to be off abx for Igenex's Western blot, and you should be ON abx for Igenex's DOT BLOT urine test (which my son tested positive on) but the DOT BLOT test will also miss a lot of positives. But we considered it to be the "smoking gun" and there are more Lyme docs (LLMDs) in the LA area than there are PANDAS docs.
Lyme testing is a very complicated matter.
I have a really comprehensive article on western blots done in Europe. Here is the link -- make sure to look at the tables. http://jcm.asm.org/content/38/6/2097.full
You can also look at this (published by Igenex's people) : http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170380/?tag=content;col1
I'm sure I have more, I can post later tonite.
How are you guys doing?
Thank you for your reply.
I did see the post about the test that cultures the blood and I inquired as to what the name of this test is and how to get this test done???
I am just not in a good place right now and my son is so sick.
It seems like many people tend to read questions but ignore.
Since I am new to these boards and not as literate about lab results and diseases I feel like an outsider.
I'm sorry your son is so sick right now. Please don't feel like an outsider and if you don't get a response right away - bump up your post.
I ran the test on my daughter, which was positive. Feel free to ask any questions on it. Here is the contact information to request the test, if desired. You need to have a physician order it for you.
Advanced Labatory Services
855-238-4949
info@advanced-lab.com
The test is not covered by insurance, but you can submit the claim and try and get some reimbursement (depends on your insurance). The cost is $595.00 and it is a culture test (not antibody test). They have a requisition form on their website you can take take to your doctor for his signature. They will then send the blood kit to your doctor. The press release gives more details (it's in another post here). Hope that helps some. Please ask any questions you may have.
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If you are in MD, you might want to consider Dr. Stacks, in VA, who was one of the inventors of the device. Also Dr. Sims, the other co-inventor, is in Columbia, MD, I think.
Hello,
I was wondering if anyone has heard of or used Dr. Baylin in MD for a dental appliance.
Thanks abbe
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So is it an alternative cyst buster? I think that's why it's being considered, but I wanted to make sure.
If you limit yourself to buying in the US, it is an expensive one for sure without a generic or compounded possibility, unless you are getting good coverage from an insurance company.
It is used sometimes for C-Diff, sometimes for parasites following other parasite/worm meds, and sometimes in rotation with a cyst-buster like tindamax, such as 2 weeks tindamax then 2 weeks alinia. I used it a few times but really don't remember doses, it might have been 500mg a day or 1000mg a day.
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Can someone tell me what this is used for, and on what kind of dosage schedule? Is it every day, every week, etc?
And, is it tons of $$$$?
Thanks!
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Wow, I didn't know about this law! I am worried now as Pedi said my son should never have vaccines now that he shows Neurological issues.
I live in So Cal, where you can claim philosophical but I think it's hard to claim once you have given your child a vaccine.
I suggest a new Pedi who would write a letter and http://www.cdph.ca.gov/programs/immunize/Documents/imm488e.pdf
http://www.nvic.org/Vaccine-Laws/state-vaccine-requirements/california.aspx
I am in California and used the philosophical exemption on the affidavit. Both my sons were partially vaccinated when I decided no more vaccines. The schools have given me no problem with my using the form on a partially vaccinated child.
Also, if a pediatrician and/or neurologist says no vaccines, hopefully they will provide a medical waiver, which all states are supposed to recognize and honor.
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I would think that if your intention is to do a single course of abx and then re-check titers to see if the strep infection has cleared, then it would make sense to run an ASO 1-3 weeks after you finished the abx (assuming you have already checked them once and have a baseline number). Anti-DNase B titers rise 4-6? weeks after an infection, so theoretically, if you checked these at the same time (10 days post-infection plus 2-3 weeks), these would be peaking.
But since you're testing for infections that aren't necessarily effected by zith, I can see where Dr T would say it doesn't matter when you have the tests done. The only test I can see being effected would be ASO, which it doesn't sound like you're doing. If you have myco, the zith probably didn't touch it. The pneumo titers you're checking are likely checking to see if a previous pneumo vaccine was effective rather than checking for current infection (unless of course your child has current symptoms). I'm not as familiar with streptozyme or how it would be effected by current zith.
Just guessing on all this, but thought I'd toss it out in the hopes it might help reconcile how different doctors could give such different advice.
LLM, I am awed by your knowledge in this area, as I am so new and overwhelmed! My son had titers done on day 5 of abx @ CHLA on Xmas.
ASO: less than 25 AntiDNase B less than 95 Dr. T is asking for them again and it's only been 11 days since they were done.
BTW- I still don't even understand these numbers except that i was told not all kids have high titers.
My son has high titers, especially anti-DNASE B, even when on long-term abx, so I don't think it matters too much.
One thing to make sure is that it is actually the anti-DNASE B that was ordered. There is a lupus DNA test that often gets ordered by mistake (lab techs can make the mistake, too) -- it's happened to us twice and to other people as well. So make sure you yourself see the lab results to make sure it's the right test!
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I'm in Pasadena. If you would like to get together some time, I'd be happy to meet for coffee or some such.
Let me know, and I will PM you some contact info.
That is great news -- to get another Southern California doc on board. There aren't many.
I was just wondering the other day if CHLA had any expertise in the area. If that neurologist seems to get on board, can you PM me her info? I need to find a good neuro for my son.
Thanks.
(Where in LA are you?)
HI Ifran,
I went on the 25 Dec to CHLA and my son had several symptoms one of them being tics, and when he was discharged all they told me was that my son had tics, and was " too pleasant to have PANDAS" I didn't need to stay overnight in a hospital with a freaked out kid to learn my son has tics, i can clearly see this!
They talked to me about psychiatric drugs and told me to seek help on an out patient basis with my pediatrician!
BUT now it seems the Neurologist has had a change of heart because yesterday i received a hand written letter from her asking to speak with Dr. T and explaining she " could always learn more and is very interested in what he's doing"
I'm in the East Valley, Toluca Lake area. The Dr I saw was a Ramos- Platt.
I really hope something good could come from this, I faxed the letter to Dr. T, so we shall see.....
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That is great news -- to get another Southern California doc on board. There aren't many.
I was just wondering the other day if CHLA had any expertise in the area. If that neurologist seems to get on board, can you PM me her info? I need to find a good neuro for my son.
Thanks.
(Where in LA are you?)
HI Ifran,
I went on the 25 Dec to CHLA and my son had several symptoms one of them being tics, and when he was discharged all they told me was that my son had tics, and was " too pleasant to have PANDAS" I didn't need to stay overnight in a hospital with a freaked out kid to learn my son has tics, i can clearly see this!
They talked to me about psychiatric drugs and told me to seek help on an out patient basis with my pediatrician!
BUT now it seems the Neurologist has had a change of heart because yesterday i received a hand written letter from her asking to speak with Dr. T and explaining she " could always learn more and is very interested in what he's doing"
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Dr Thomas Lin in Irvine is a PANDAS doctor that people in Southern California go to. We are not his patients, but he is on our short list, if needed.
I also live in LA -- it is a bit of a wasteland. We discovered Lyme, and there are a few more lyme docs in So Cal than PANDAS docs, and that's our current focus. But I'd sure appreciate any PANDAS info for local docs if you come across them. Some of the DAN docs (Defeat Autism Now! docs) might be helpful.
I wish you the best. It's hard out here.
There is a psychiatrist in Burbank, Dr. Nancy Mullan, but she doesn't want to use antibiotics, which is what most other PANDAS docs do want to use.
Did he go into CHLA without tics and was discharged with them? How did that happen?
-- lfran
Thank you to all that gave me words of encouragement and a little info.
my son was discharged from CHLA with tics!! The neurologist wouldn't even really LOOK at him. too busy scribbling in her notebook and scrutinizing me!
I finally took matters into my own hands and forked out big bucks for a Dr in New Jersey who's well known here and elsewhere : Dr Trifiletti.
What is so frustrating is the LACK OF GOOD HELP/CARE IN LOS ANGELES!
PowPow, yes BH is in los angeles.
lila@zadar, My husband is French , I looked at treatment options in France and they look bleak, unlike Italy which is a bit more "informed"
A Dr. who refuses to see you w/o good insurance? Imagine that?
I am currently looking at these dr's: DR Deborah Lehman @ Cedars Sinai pediatric immunologist
and Dr. Pamela Varady clinical Psychologist.
Anyone have feed back on a Dr. Schweig in Petaluma?
3boys mom thank you for reminding me that every kid is different, I do get worried and overwhelmed!
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Can we continue to get camkinase levels done? I thought Dr. Cunningham's lab was the only place, and that she had stopped.
Please let me know.
Thanks.
I've been looking back over my son's blood test - looking for substantiating evidence for chronic infections.
HIgh monocytes. high eos, Low overall IgG - not low enough to cover IVIG, but lower than normal range, l makes no strep pneumoniae titers. Low iron (ferretin), and other minerals, despite being on iron rich diet.
I also consider the fact that the Cam K only went down to 132 one of them. Why? because a chronic infection would cause both inflamation as well as an overreactive immune system (which has been documented all along with the high monocytes). And just like kids with strep WITHOUT pandas - who have a median cam K of 135, I'm assuming other types of infections know to cause pandas (mycoplasma and lyme) would elevate the Cam K as well. Lyme's a given on that one - she has already said lyme with highly eleve cam K. What I don't know is will Lyme (or mycoplasma) WITHOUT neuro -pychological symptoms elevate Cam K.
All of these number indicate a chronic infection. they can also indicate other things, like lupus, leukemia, or other autoimmune disease. but once I saw the IgG up, I knew he had that.
There is other testing for mycoplasma. You can also do PCR testing.
IF you have other markers of chronic infection - and don't have full resolution of pandas - and a consistently above average Cam K (130 is still pandas range!). My son's cam k as 176 - when he was at baseline with almost no symptoms. I've no idea how high it was during exacerbation. If you look at the study, how high it was didn't matter. The very high high ones went down to normal too. (at least the same percent did - as memory serves, not looking at the study). So I could stand to be corrected, but I do recall wondering if IVIG was as effective with very hig cam K, as with lowish - and I think I recall that it was.
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What are the genes we should test for -- dreaded and otherwise?
Thanks.
My dd6 reacts a lot too- sensitive- we did find out with HLA testing that she has one 'dreaded' gene-
meaning she doesn't detox neurotoxins from Lyme or mold well-
and some MTHR genes that need help, too.
I have been where you are, honestly thinking 'yeesh, I should just take her off everything'
and I have, and I get maybe a day or two break, and then it all comes back anyway.
Just added Rifampin for her today, first time, she's been on Cipro about 4 days-
well, an hour after Rifampin, we had a scary exorcist moments, and later today I see purple marks I've never seen on her back.
I want to keep her on this, but detox here has to look like this:
2 hours after antibiotics, I dose her with CMS powder (binder)
If I didn't have CMS powder, I'd be using the Bentonite caps I have here, or charcoal.
But 2x a day.
Then, in the middle of the night, I wake her for a few moments to get bowel movement supps in-
Oxy mag or Oxy powder.
I have burbur drops, gentle drainage drops- Epsom salt cream I rub on her, she won't take the bath-
whatever I can find.
I am not as far along as you, and I'm just throwing stuff out-
it's hard, I know.
Hang in there--
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Can you send them to me too? We're considering this as well.
Is this the best lab to use?
Thanks.
Sent you my scanned instructions...
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Again, I am so sorry to hear what you are going through.
Here is a link to a psychiatrist in Burbank, CA who treats PANDAS non-psychotropically (and also without antibiotics). If I understand it correctly, she feels as a psychiatrist that many psychiatric issues are related to food and metabolic issues. She has an e-book that may be of help. If nothing else is working, perhaps there is something in her work that may be of help.
http://www.psychiatryburbankca.com/
I sent you a PM.
I have not posted an update on my DS 15 in a very long time. I had been waiting for things to get better in the hopes that there would be something positive to share. But this has not happened, and I feel it's time to share what we have been going through over the past year and a half.
My son developed PANDAS after a strep at age 10 and things got much worse after he had vaccines several months later. He was hospitalized seven times when he was in the sixth grade until things slowly improved after numerous interventions and he went three years (until May of this year) without being hospitalized.
Between 6th and 8th grade, he got to a point where he was about 80-90 percent recovered. I believe many things contributed to this including antibiotics, a gfcf diet and numerous supplements, two rounds of plasmapheresis, three rounds of high dose IVIG (only the first one seemed to help him), and neurofeedback. Although he required many accommodations in school, he graduated 8th grade with very good grades and the Rotary Club award for extraordinary progress, and we really thought he was on his way to a full recovery.
Then he had a setback in the summer after 8th grade, triggered by an arm fracture that happened while he was in overnight camp, and things began to go downhill. We tried doing lyme treatment for a second time (we had tried it once before when he was in sixth grade), but things continued to get worse, and during his 9th grade year, he became more and more impaired until he was unable to do school work, engage in productive activities or function in a normal way. Beginning in April of this year, his OCD took a back seat to new and much more disturbing symptoms, major debilitating delusions and paranoia. I am not sure what caused the onset of the psychosis, but one of his doctors feels that a growth spurt and puberty, may have played a big role, and I am in agreement with this theory.
Since April we have tried just about everything there is to try to fight this (including Bicillin shots, changes in antibiotics and supplements, another high dose IVIG in July, high dose antipsychotics, and homeopathy). But no matter what we did, he continued to get worse, and two months ago his delusions took over to the point where he could no longer keep himself safe and we had to hospitalize him again.
He has been in the hospital since late October, and a couple of different antipsychotics were tried without much success. He is now beginning to respond to Clozaril, a last resort antipscyotic, which is often used for treatment resistant schizophrenics. So far the improvements are very very small, just baby steps, but we are hoping that at some point, it will reduce the delusions and get him to a point where he can function in a more normal way.
For now we are taking a break from PANDAS treatments ( I feel like we have done all there is to do and tried all there is to try but nothing that has worked for him in the past seems to work in the present). Hopefully, at some point, when he is ready to come back home again, we can try something new. I am not sure if this is PANDAS mimicking schizophrenia or if he now has actual schizophrenia that began as PANDAS, but regardless of the cause, we are forced to rely on psychiatric medications since nothing else seems to help. If anyone knows of similar stories, of kids who started out with OCD as the prominent PANDAS symptom, and are now dealing with full-blown delusions/hallucinations/paranoia I would like to hear more. I am trying to figure out what may have caused this, how he got to this point where nothing we try seems to help, and what interventions to consider for the future.
This has been a devastating year and a difficult holiday season for our family. But I am trying my best to remain positive and hopeful and keep thinking there is something that we haven't tried that will help in a big way and get him back to the high functioning, creative, funny, and happy kid he used to be. I know that boy is still there, wanting to come out and hoping somebody will have some advice that will help us get him back. Hope you will keep my son in your thoughts and prayers.
Ellen
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I sent you a PM.
I have not posted an update on my DS 15 in a very long time. I had been waiting for things to get better in the hopes that there would be something positive to share. But this has not happened, and I feel it's time to share what we have been going through over the past year and a half.
My son developed PANDAS after a strep at age 10 and things got much worse after he had vaccines several months later. He was hospitalized seven times when he was in the sixth grade until things slowly improved after numerous interventions and he went three years (until May of this year) without being hospitalized.
Between 6th and 8th grade, he got to a point where he was about 80-90 percent recovered. I believe many things contributed to this including antibiotics, a gfcf diet and numerous supplements, two rounds of plasmapheresis, three rounds of high dose IVIG (only the first one seemed to help him), and neurofeedback. Although he required many accommodations in school, he graduated 8th grade with very good grades and the Rotary Club award for extraordinary progress, and we really thought he was on his way to a full recovery.
Then he had a setback in the summer after 8th grade, triggered by an arm fracture that happened while he was in overnight camp, and things began to go downhill. We tried doing lyme treatment for a second time (we had tried it once before when he was in sixth grade), but things continued to get worse, and during his 9th grade year, he became more and more impaired until he was unable to do school work, engage in productive activities or function in a normal way. Beginning in April of this year, his OCD took a back seat to new and much more disturbing symptoms, major debilitating delusions and paranoia. I am not sure what caused the onset of the psychosis, but one of his doctors feels that a growth spurt and puberty, may have played a big role, and I am in agreement with this theory.
Since April we have tried just about everything there is to try to fight this (including Bicillin shots, changes in antibiotics and supplements, another high dose IVIG in July, high dose antipsychotics, and homeopathy). But no matter what we did, he continued to get worse, and two months ago his delusions took over to the point where he could no longer keep himself safe and we had to hospitalize him again.
He has been in the hospital since late October, and a couple of different antipsychotics were tried without much success. He is now beginning to respond to Clozaril, a last resort antipscyotic, which is often used for treatment resistant schizophrenics. So far the improvements are very very small, just baby steps, but we are hoping that at some point, it will reduce the delusions and get him to a point where he can function in a more normal way.
For now we are taking a break from PANDAS treatments ( I feel like we have done all there is to do and tried all there is to try but nothing that has worked for him in the past seems to work in the present). Hopefully, at some point, when he is ready to come back home again, we can try something new. I am not sure if this is PANDAS mimicking schizophrenia or if he now has actual schizophrenia that began as PANDAS, but regardless of the cause, we are forced to rely on psychiatric medications since nothing else seems to help. If anyone knows of similar stories, of kids who started out with OCD as the prominent PANDAS symptom, and are now dealing with full-blown delusions/hallucinations/paranoia I would like to hear more. I am trying to figure out what may have caused this, how he got to this point where nothing we try seems to help, and what interventions to consider for the future.
This has been a devastating year and a difficult holiday season for our family. But I am trying my best to remain positive and hopeful and keep thinking there is something that we haven't tried that will help in a big way and get him back to the high functioning, creative, funny, and happy kid he used to be. I know that boy is still there, wanting to come out and hoping somebody will have some advice that will help us get him back. Hope you will keep my son in your thoughts and prayers.
Ellen
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But now my own questions, to those who have been down this path.
If Parkinson's is inefficient use of dopamine, isn't it the opposite of tics? I thought Tourette's, for instance, was too much Dopamine in the system. And my DS10's Cunningham test showed sky-high anti-D2 Receptor antibodies. But what does that really mean? Are his D2 receptors being blocked, so glutathione would be good? Or is it the opposite?
Thoughts?
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Valid point since DD is already on fairly high doses of NAC. I just emailed our Dr to check on this. Will report back what he says.
I searched online for combo effects but could not find anything.
Thanks for the info.
I also posted the link on the Lyme board, and was told the link didn't work, so I'm posting a direct youtube link here for anyone who has the same trouble but wants to see the video.
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I know this is Parkinson's and not Lyme/Pandas/tics etc, but I thought this video was amazing.
Take 2 minutes and watch it, and let me know what you think.
I can't get the link to work.
Here it is as a youtube link. Sorry.
MTHFR results in
in PANS / PANDAS (Lyme included)
Posted
Surprise, surprise, DS10 (Lyme, possibly PANDAS) is homozygous for the C677t mutation. (He is normal for the other mutation they test for). We will start to supplement with the 5methyltetrahydrofolate and hope that makes a difference. He has been on b supplements and NAC for about 2 months and we have seen a lot of improvement with everything except tics.
So..I have read that C677t is pretty common (1.5 - 15% of the population, if I read the Quest results right) but STILL. Isn't it significant that our affected kiddos keep coming up positive on these? I also read to avoid Nitrous Oxide if you have this mutation. Dentists use it a lot for pediatric uses (and don't some teens use it recreationally?) It sounds like it can be extremely dangerous for this subgroup.