lfran
-
Posts
640 -
Joined
-
Last visited
-
Days Won
1
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by lfran
-
-
We are considering going to rothman soon. Are all the therapists equally good? Any I should request? Any I should avoid? Feel free to pm me if you prefer. Thx!
-
Sent you a PM
Hi Everyone,
DS8 is currently in severe PANDAS flare caused by stomach virus. Intrusive thoughts are worst ever very violent and sadistic in nature. I am trying to address the brain inflammation with ibuprofen and EPA (2 caps ) every 4 hours. Symptoms are starting to stabilize with this protocol so far. Also using fresh blue berries, pineapple and coconut oil for cooking. Already GF and DF. If anyone has any more ideas please let me know. This is a rough one.
-
Just curious -- did the dentist use Nitrous Oxide gas as an anesthetic when he treated your son?
There are a handful of kids on the PANDAS board who have MTHFR mutations, and Nitrous Oxide is supposedly very dangerous if you have this mutation. Wondering if that might be the link to the dental work causing the tics.
My 10year old son had dental surgery 8months ago. My son has never had tics of any kind. But the day I brought him home from a dental surgery to fill only two teeth...the very day he came home..he came home with tics. It took 7 months to get in to see a neurologist. Throughout that time..we visited with many different doctors..chiropractors, naturalpaths..dentist, and noone had ever heard of a kid getting tics from a dental surgery. I have looked everywhere to find out if there's anyone out there with the same thing...and here you are. Can you believe the doctors refuse to believe that dental surgery will cause tics!!! So hey..what is working for you? My son has been on an organic diet ever since his symptoms started, we are very conscious about toxins in the home environment and outside..the neurologist's only idea is to give my son drugs..which I won't. I need to find something that is most natural. currently only trying to up magnesium..we are doing about 100mg every other day...? My son's tics started with hand spasms/stiffness, then went on to the feet, and now his neck. Can you help?
-
Don't know if this was DS' initial trigger, but this whole nonstop ticcing started about two weeks after he had two teeth extracted without prophylactic antibiotics -- and possibly with nitrous oxide. I know he had nitrous at least once from his dentist -- I *think* that was the time, but I can double check. I read that nitrous can be very dangerous to those with B12 deficiencies, and that having a MTHFR variation means that you should never have nitrous.
For a long time, parents here have reported that teeth issues can trigger a flare. Perhaps because the mouth has so much bacteria and when a loose tooth breaks the gum open, it allows bacteria into the blood stream. For whatever reason, it's a common trigger for our kids. When my kids behaviors start to change and I know they have a loose tooth, I have them swish twice a day with Peridex - it's an antibacterial rinse we get from our dentist. He gives it to patients who've just had root canals and crowns. If you can't get that, listerine w/o alcohol can also help, as does motrin. You can also consider a zinc supplement or something like Zicam to help the immune system.
-
Who is Dr. B in California? LA area or Northern Ca? Can you PM me? Thanks.
We had an OAT test done over the summer... I STILL haven't found a doctor who can decipher it!! Two of them (both well known pandas specialists) called it "gobbledeegook" and "fringe" testing
and I paid $500 out of pocket for that. I still hope I can find someone who understands it... We have an apptment with Dr. B from California next week so I'm hoping she knows something about it good luck with yours - I hope it is helpful to you! -
Sent you a PM
We went 3 years with only Augmentin XR 1000 but now since the Coxsaackie Virus in November, DS finished 20 days of Valtrex and went down hill a week after it ended. Dr. just called in another month of Valtrex and said that some people take anti-virals for years. I really wanted him off meds by now and didn't want to add more (and it was $340. to fill a months worth - not to mention the augmentin cost times 3 sons)! So I guess we will see how long this will be taken.
Linda
-
Bumping this cause I would love to see if those with kids who are old enough to donate blood would see any positive effect after donation. At age 11, ds is still too young.
-
It happened once for my ds when he was about 9 and has a whole Ton of blood drawn. All his tics stopped for a few days. Only time ever.
There is something called therapeutic phlebotomy where for certain conditions they draw blood as a treatment plan bit I could never get anyone interested in pursuing this.
However he also had a lot drawn at age 11 and we did not see the same effect. But maybe it was a smaller percentage of his blood volume the second time
-
I think it all depends on the individual. The single mutation is very common (about half the US population has it), but it still impacts the ability to process folate. It may also be *part* of the puzzle, just not all of it.
LLM has reported that addressing MTHFR has helped her daughter a great deal -- just double checking, but I'm pretty sure her daughter has only the single mutation.
You can start reading up at MTHFR.net, if you want some comprehensive information.
It is my understanding in talking with the Ped. who had my son tested, Dr. Latimer and Dr. Bouboulis, that the single mutation does not need to be addressed. If there is a double mutation, then it should. My son has the single.
-
Will dr cunningham talk with the treating physicians? Ds11 was sky high for the antid2 receptors also. No one seems to be addressing that piece of the puzzle for him.
-
Sent you a PM.
Thanks.
Why does it say that she needs to be tested in 1-2 weeks then?
And why does it say antibody detected. Phew! they are hard to read. Wish I could send you a snap shot of my report, because I don't see the numbers your talking about. Would u mind if I emailed them to you? or is there a way to post them here??? thanks, Lillt
-
Well, that means that she is heterozygous for the MTHFR variation and this can impact her ability to process folate, although not as much as if she was homozygous for the variation. That whole cycle is involved in neurotransmitter formation. You might want to check old posts, because LLM has posted that her daughter also is heterozygous for this and supplementing small amounts of methylfolate has helped her enormously.
As for the M. pneumonia, I think that maybe what you reported here are the reference ranges. Those reports are hard to read, but they usually give three reference ranges like what you posted, and then somewhere near those ranges are the actual value for your daughter. If you look at it again, maybe that will jump out.
Actually, I just checked my son's results for M. pneumonia. Right after the words M. pneumonia IgM Abs is a value like < 770. Then lower and to the right are the words that you posted. That means that my son's value was < 770, which is negative -- he does not show antibodies to M. pneumonia. There should also be similar information for IgG Abs, but the reference ranges are different (like < 100).
Hopefully that helps. If your report looks like mine, why don't you post again what her levels are. Maybe, like my son, she's actually negative for this and that would be one avenue you wouldn't need to pursue right now.
Let me know, please, if this doesn't make sense.
The spit test was Biohealth diagnostics, says adrenal stress profile. I think we did another with too. I am checking. The MTHERR mutation says:
This patient's sample were analyzed for the MTHFR mutation C677T AND A1298C. A single copy of the C677T mutation was identified. Results for the A1298C mutation were negative. The diagnosis of hyperhomocysteinemia can not rely on DNA testing alone but should take into consideration clinical finding and other studies, such as serum homocysteine levels. Because MTHER mutation and their associated risks are inherited, genetic counseling is recommend. Thanks for helping.
It also says this on tests that Dr.T did...(test done several years ago)
Clinically significant amount of M. pneumonia antibody not detected.
Low Positive 770-950
M. pneumoniae specific IgM presumptively detected. It is recommended that another sample be collected 1-2 weeks later to assure reactivity.
Possitive >950
Highly significant amount of M. pneumonia specific IgM antibody detected.
I am so thankful for your help.
-
Which spit test did you do? The 23andme spit test shows 100s of genes -- no one is "fine" on all of them!
And, most importantly, what did your C677T results say exactly? Please look them up and post the results for the C677T and the A1298T if you have them both. Several of us have seen great benefit from addressing a C677T mutation. Not very many doctors know a lot about it, but addressing this has been very very helpful to my family and to at least a couple of other people on this board.
I did the spit test and it came back fine. Our doctors just keep saying she's a tough case. They are trying hard. We were advised to do genetic testing next. The KPU was fine, but we found C6772T MTHR mutation identified. Doctors did not mention anything about it when it was on results, so I did not think there was a problem. Since then...I called naturopath and she said it would not be causing all of my child's trouble. I was told recently that this "mycoplasma phnuenonaei" could be a problem. Going to Dr. B. Thursday to discuss everything and to try to IVIG covered.
-
Lilly --
A lot of us have been taking the $99 23andme genetics test, which you can get without a doctor's prescription. It is a spit test, so non-invasive. It takes about 6 weeks to get results back, and you can order it from 23andme.com.
Since it seems like you have tried everything, this may possibly shed some light on some underlying conditions. It might be worth a try, although you should read up on it first, since it just offers information such as: with this genetic variation, you are more likely to develop X or Y or Z or less likely to develop X or Y or Z.
Also, if you haven't already done so, have you tested for KPU and MTHFR? The first is a urine test, and the second is a blood test, although 23andme will also test for MTHFR so you can get the info that way (but it takes a lot longer). Both are pretty easily addressed with targeted supplements.
What do your daughters doctors say?
Mold was the first thing I thought was her trouble when we first started this. I threw out almost EVERYTHING in my house. Spent thousands on new wool mattress pads and bedding. Tossed all carpets etc...Had all kinds of experts in etc.... Put her on cave man diet, but she still raced and bounced off the walls. Looked pale with red bags under her eyes. Her racing thoughts were scary. Could not stop her brain. Horrible. What I did was not helping. Up all night. EVERY NIGHT!!! Having her in tons of activities did not make her tired. I went to live with different relatives and went to less humid climates and slept in car with her to get her away from mold. Went to 3 allergists etc...Nothing helped. I am looking into it again, because S.Smith did a urine MOAT test that said she was high in fungus and mold. Not sure if it is a different type of mold situation then what I was researching in the past. Didn't ask...I just tried the medicine he gave me and it made her worse, but at the time she was also on Prozac that was making her violent. So I am going to revisit this. I keep thinking of how some mushrooms can make people hallucinate and perhaps thats whats happening to her. She just never stops running and hallucinating. She sees imaginary friends, never in the real world, but at times she begs for me to help her stop the thoughts. I need to learn more about this mold and fungus thing.
-
S and S --
I know that this has been discussed before, but have you had your DD tested for methylation anomalies? I ask because
my DS had terrible fears that reduced dramatically when we started giving him methylfolate. He has the C677T++ variation of the MTHFR gene.
I decided to reply, as my dd has been on risperadone/risperadal.
We are the backwards story here, having first treated bio-medically, then PANS, then Lyme all for years, then after all that, getting a dx for autism and trying some of these drugs recently.
From your post, and your history, it sounds to me like too much is going on at one time- is your child still on antibiotics?
IMO, risperadone or any SSRI'S should be introduced slowly, and 1 at a time spaced weeks apart, with you taking copious notes for any type of reaction.
If you overlap them so close to one another, you cannot tell what is what. And, if you are treating Lyme or infections at the same time, having die off,
it can be a mess, and very hard on the liver.
Every child is different, and some of us bring in co-morbid issues. For us, risperadone did work at stopping some violent rages (it is also used to treat autism, not just bi-polar)
We did try and add an SSRI'S, Zoloft, for the very first time this last month.
It was a No Go- as soon as this med started kicking in, day 10-11, it increased my dd's OCD to levels I hadn't seen in 2 years, including her fears from that time about dogs coming through her bedroom window, etc.
I pulled it 100% immediately, and will never try an SSRI for her again. As soon as that drug left her system, these fears are gone again.
But because we had no other new factor's at the time of this trial, it was plain to see it was this drug.
Lastly, depending on which Dr. you are seeing, that particular Dr. is going to give you their information based on their expertise.
Best wishes-----
-
Anyone know if it's okay to get allergy shots when being MTHFR C677T homozygous? Not for my PANDAS child, but for his sibling, who is also MTHFR.
Thanks!
-
Just curious how long it takes for Valtrex to lessen a viral load?
-
Hi Mayzoo.
Just saw your info at the bottom and wanted to ask about the strabismus. My DS11 also has bilateral strabismus -- it is Duane's Retraction Syndrome, which he inherited from me. Just curious if your DD's strabismus is Duane's. Also, I have always thought that some eye positions are triggers for tics. Have you noticed any correlation that way?
Thanks!
He is an ENT in Dallas and Plano TX, and we saw him today. He is familiar with PANDAS but does not appear to be thoroughly educated on it. He believes it exists, but he seems to believe too many patients are being diagnosed with this that do not fit "the criteria" (not sure which he uses). He came in a bit skeptical IMO, and asked some questions before he agreed our daughter in fact sounded just like a PANDAS case.
All we we went for was a recommendation on her tonsils, not general PANDAS treatment. He wants to go ahead and remove them (full T&A), but says he does not normally culture them, but he will if we really want him to.
Just wanted to pass on the information in case it helps anyone.
-
No,I think it's quite different. You can google 23andme.com.
OK, so I got my test kits in the mail and am about to collect the spit samples.
If I want to use a pseudonym, can I do that? Anyone know?
LLM, I recall that you had a specific plan to protect your privacy. Are you going to use your actual names?
Thanks!
Is this the ame as the Courtagen test?
-
OK, so I got my test kits in the mail and am about to collect the spit samples.
If I want to use a pseudonym, can I do that? Anyone know?
LLM, I recall that you had a specific plan to protect your privacy. Are you going to use your actual names?
Thanks!
-
Just wondering if others can chime in with dosages and kids' weights.
Thanks!
My son has been on Valtrex for about 14 months. He has made huge gains on it. I've said this many times before, so forgive me for repeating myself - but he calls it the "magic blue pill." He himself could notice a difference in how he felt emotionally and physically after 1 month on it.
He took (2) 1gm pills/day for 1 year and we recently dropped to a maintenance dose of 1 pill/day.
My DD13, DH and I have all taken it long-term with no noticeable side effects.
-
Just found this paper and powerpoint by a group that focuses on the methylation pathway. Thought they were very interesting.
For perspective, take a look at the "You are here" slide that is page 66 in the powerpoint. LLM, I thoughtof you when I saw this!
Anyway, here's the paper http://m.ajcn.nutrition.org/content/80/6/1611.full.pdf
And here's the powerpoint http://www.powershow.com/view/14bd82-OWMwN/S_Jill_James_PhD_powerpoint_ppt_presentation
-
Vitamin D always increases DS11's tics, every time we try.
The vitamin d3 helps mt girl with confusion and sleep but it does make her a bit nasty, but so does everything we try. Hopefully she will even out.. I am adding magnesium for constipation so perhaps magnesium might take the edge off.
-
Another way to get lower dosages is to buy Life Extension's 1 mg capsules and remove most of the contents. That's what I do. I stockpile the excess and I plan on buying empty capsules to refill them, so the excess isn't wasted.
I think you did the right thing by stopping the high dose of methylfolate. First, it's probably best to only change one thing at a time. So I'd probably focus on settling on the "right" dose of abx first (and testing for infections) and staying there for a few weeks. Then keep that consistent and turn to methylation issues.
There isn't much written about A1298C mutations, but I don't recall reading about using methylfolate for this one. Yasko talks about using BH4 or TMG as the supplement to work with. At any rate, from my little experiment of one child, 5mg is far too high for a starting point for anyone. Some adults or teens (with C677T mutations) maybe need to build up to this, but probably fewer kids. And starting low and building up is probably a good idea for everyone.
So I'd have done what you did - stop it altogether and use niacin for a few days to mop up the excess methyl groups (also keep an eye on what she eats and avoid high folate foods like fortified cereals for the next few days). When I needed to do this for my DD (now 8 but 7yo/46 lbs at the time), we stopped methylfolate for a week while things settled. Her moods calmed down considerably. It was only when she started getting moody again that I re-introduced the methylfolate, starting with one drop @ 67 micrograms, every other day (she is hetero C677T). We've stayed at one drop every other day for 7 months and she's been more stable than she's been in years.
With only A1298, you may not even need any methylfolate. You may want to post a question on the mthfr.net forum or facebook's "mthfr support" page. The people there are very knowledgeable, with a few naturopaths/chiropractors who treat methylation issues who often chime in with answers. If you do decide to reintroduce methylfolate, I don't even think I'd start at 1mg. Look for something that can be given in a lower dose and built up if needed.
Hopefully, things will continue to settle and you'll be able to regain your balance.
and I paid $500 out of pocket for that. I still hope I can find someone who understands it... We have an apptment with Dr. B from California next week so I'm hoping she knows something about it
Insurance requirement/vaccinations
in PANS / PANDAS (Lyme included)
Posted
I believe you can still have a personal belief exemption in California but a health care provider has to sign that they counseled you first regarding risks and benefits.