Epsom salt bath

[Sunshine]

Hi everyone and Happy New Year!

 

Kim, I just wanted to respond to your quote:

"My impression is that there is the testing at the price shown and then there's one that gives Dr. Amy's interpretation and recommendations for supplements? Maybe Sunshine can comment on this. She does have a physician who is guiding her with the Yasko protocol, so she may not have had to order on her own."

 

....... You are right. Anyone can order the genetic testing for about $700.oo, but it would hold little meaning without the guidance of a physician. Our doctor follows the Yasko protocol, so we ordered the basic genetic testing without Dr. Amy's input. For me, following the protocol is like learning a foreign language, and it makes my brain really hurt sometimes! Also, for us, it's costing a small fortune, but there's no price tag on making my son healthy!

 

I will create another thread to update everyone on how my son is doing, and what treatments we have done. I will call it "Road to Recovery for PANDAS son".

 

Cheers,

Sunshine

[kkver]

Thanks you Sunshine and all for replying . I was away so could't post . This is good information for parents with kids who have Tics. I stopped epsom bath after 2 days and now i am seeing marked improvement. It will take few more weeks for tics to go away ( keeping fingers crossed ) but now i can confirm i did see increase in Tics with the use of epsom salt .

[Chemar]

I am so glad you posted this thread, kkver as this is important info for us to have on record re the sulphur sensitivity possibly being affected by the sulfate aspect of the epsom salts, and that this in turn could be a tic trigger.

 

it also emphazies again why we all need to always be so very careful about recognizing that there are so very many variables in the way our kids react to things.

 

for my son, Epsom baths are an instant tic calmer, yet here it was a tic trigger for yours.

 

good that you were able to identify that so quickly, and hopefully that will supply some answers to anyone else who may have noticed a tic increase with epsom salts baths

[bcase]

I would like to try the Epsom Salt baths for my daughter but now I'm afraid. Is there any test or any way to test for sulfate sensitivity? I would hate to increase her tics worse than they are now. My heart is broken, I feel so helpless. She asks me what is wrong with her and why it won't stop, and I have no answers. I am so sad. Thank you to everyone in this forum. It gives me hope but there is so much information and it can be overwhelming.

 

Bcase

[myrose]

I would like to try the Epsom Salt baths for my daughter but now I'm afraid. Is there any test or any way to test for sulfate sensitivity? I would hate to increase her tics worse than they are now. My heart is broken, I feel so helpless. She asks me what is wrong with her and why it won't stop, and I have no answers. I am so sad. Thank you to everyone in this forum. It gives me hope but there is so much information and it can be overwhelming.

 

Bcase

 

 

Gee my heart is with you. I kow alot of the Moms here mention that maybe sometimes we as the parents pay more attention to the tics then our children do. But I must say as like you....it broke my heart when my happy little 5 year old girl did not want to go to a birthday party because her tics were bad and she was wfraid someone would notice. Other kids can be SO cruel sometimes. She cried so hard and all I can say is that is the day it all started for me.

We are tic free at the moment....I am just waiting though and scared. Kindergarden will start for her soon and its a frightening thought.

I added a hepa filter in her room and she was put on nasonex for two woeeks (all stemmed from a plugged nose that would not go away)

the tics were reduced greatly at this point. I would say 98%.

Then she went last week for cold symptoms and a stuffed up nose again and we were told she had strep throat. (I insisted on this test) she did not have a sore throat at all or any white spots in her mouth. It came out Positive and she was put on amoxicillin twice a day (first time on antibiotics in her life) well the tics went away the next day and have been gone since she has been on the antibiotic.

It has been recommended to me on these boards to get the levels of the Pandas (titers) testing already done. Also that you DO NOT have to have high levels and they came be normal yet still have pandas.

We are antibiotics until next Saturday....if the tics return after we are done with the antibiotics....I know what my next step will be and from what I have heard on these boards...its not going to be easy convincing these Doctors to listen and prescribe antibitocs but I am ready to fight the fight............Everytime I feel like giving up and drowning in my grief all I have to do is remember that day she cried so hard...... use your child for strength.....you will and can help her.....I am not sure what steps you have already taken to help her but do not get overwhelmed. Start out slow, one thing at a time. You can do it and you can do it TOGETHER!

You will come out stronger and closer than ever before....

[tlkinser]

Hi Kim!

 

Wow.... your response triggered so many light bulbs for me... where do I start?

 

Perhaps what I found most interesting was that your son had a benign tumor. My son had a benign tumor the size of a golf ball when he was 2 1/2. It popped out suddenly, and he had it removed via surgery after an MRI and CAT scan showed no results. Of course, it slowly grew back as a flattened lump on his wrist. I had no idea that his tumor could be related to any of his current issues, and have therefore never asked his new doctor. It's food for thought... my next research project!

 

There are four CBS SNPs which can affect the methylation pathway. Too much sulfur puts strain on the CBS cycle. Also, sulfur is able to directly activate the stress/cortisol response which can lead to secondary responses in the body (eg: lower magnesium, & decreased serotonin, dopamine and GABA). Problems with CBS up regulation can be exacerbated by a high protein diet, B6 supplementation, excess sulfur, and elevated glucose. My son has only one specific CBS up regulation mutation. However, all three ACHY SNPs are mutated, which changes the methylation pathway towards transulfation. Also, he has all three VDR mutations which would lead to elevated glucose (therefore causing more CBS strain).

 

We do not limit sulfur foods, but we do not supplement with any sort of sulfur donors (eg: DMSA, glutathione, taurine, milk thistle, Epsom salt baths...). We also ensure that he has ammonia support as well as Molybdenum.

 

I am quite sure that toxins can inhibit the activity of PST enzymes, even without a genetic predisposition. If the molecules of sulfur are not being converted into beneficial chemicals, some could get stuck in the sulfite stage and cause toxicity. The conversion of sulfite (which is not good) into sulfate is affected by the SOUX SNP. A mutation there could thus lead to some problems with sulfur as well.

 

My son would have a harder time clearing any toxins from his body (due to thermerisol, environmental toxins, heavy metals, bacteria etc...) because of the mutations in his overall methylation pathway. His CBS mutation is only a piece of a much bigger puzzle. We are still trying to support and bypass all of his different mutations. His progress is REMARKABLE (did I bury the best news or what?! Horay for my little sweetie!!! ).

 

I have not read about Parkinson's or RLS, although I am curious now about sulfur's involvement in these conditions. I think RLS runs in the family, and definitely phenol intolerance is a biggie for us. I will look into that a bit more.

 

On a last note, I can only wish that we lived somewhere sunny. We're up in BC, Canada where it is cold and rainy right now. With all three VDR mutations, my son would greatly benefit from a trip to a sunny location during the winter. Perhaps next year, after I win the lottery !

 

Cheers,

Sunshine

 

Hi Kim, Sunshine, and bmom,

I was reading through some older posts and came across this thread. I wanted to add that my son also has a small tumor/cyst on his wrist (a ganglion cyst I believe it is called) that just appeared (I noticed it approx 4-5 months after he exploded with tics nearly over night last spring.) My dr also assured me that "it's nothing to worry about" and I haven't thought twice about it since I saw this thread. I also wanted to add that I do give him epsom salt baths nearly every night but they don't seem to help. I have noticed that it dries his skin and makes it red. Just tonight, I noticed that he is developing small circular red spots (about the size of a dime or smaller) on his back and chest (maybe 3-4 on his back, 2-3 on his chest and one that looks like excema on his face/cheek). I don't know if the two are related, but either way, I don't believe the salts have helped him as he is still ticcing just as much and sometimes more (with louder vocals) at bedtime.

 

FWIW, here is our quick history: my son began snorting last spring and within 2 days he was snorting non-stop, seemed very spacey, and looked like he had cerebral palsy as his whole body began arching and jerking. It was shocking and so scary. Like everyone else here, I didn't eat or sleep for days and learned from Google that my 4 yr old son probably had Tourette's Syndrome. After several drs visits, we learned that he had elevated strep titres even though his throat swab was negative. He did a course of amox and his tics slowed but never went away. He continued to tic all summer both vocal and motor to the point that we didn't do much outside of the house. At that point, his strep titres returned to normal and talk of PANDAS was replaced with TS that coincidentally began during strep. (My daughter also began some light vocal tics a few weeks after my son and she too had strep- it was making me crazy!) He has ticced ever since (we are now 10 months into this journey) and we are still trying to find his triggers. This past month, screens have definitely been a trigger for him, but there's something else that we haven't put our finger on. We did all kinds of testing last fall and learned that he tested extremely high for casein and milk (IgG). We've adjusted his diet accordingly (also tried Feingold and still do a modified version of this), and we are getting ready to start him on a customized amino acid blend. I am also going to try Bonnie's Supplements (not at the same time in case so I can judge any reactions). My son tics all day: head shakes, mouth-widening, slurping sounds, spitting, kissing, lip licking, abdominal flexing, hopping, vocal sounds such has humming, bird-like noises, tongue clicking, etc. He is a sweet little boy and does well in Kindergarten, but he is very active and wiggley. He has had restless legs at nights as well. He just seems so uncomfortable and unsettled all of the time. Although he tics all the time, the tics are not as obvious as the snorting was when he started all of this. Some people wouldn't even notice his tics and he does a good job of holding them in at school for the most part.

 

Anyway, I'm sorry that I've rambled on and on. I just found it interesting that I am the 4th person to mention the benign tumor/cyst and wonder what the connection may be. I have a hard time wrapping my brain around some of the medical journals so if anyone can shed some light on this for a "mom" who speaks "kids language" these days, I would appreciate it! :-)

 

Thank you to all of you for all of your posts. I know my answers are buried somewhere here at Latitudes; I will just keep digging until I find our solution! (That is why I'm up all night!)

 

tlk

[P_Mom]

Just a thought... you are noticing a rash on your son... "small circular red spots on his back and chest." Well, my son had these same spots on his back and chest, well, atleast they sound like it COULD be the same thing, and his tics were noticeably up at the same time. This rash was caused by a virus, which the only sign of this virus my son has was the rash. For us, the virus was what caused the increase in tics, and we wouldn't have even know it if it weren't for this mild rash. Perhaps you are experiencing the same thing.

 

My son also had about the same number of spots on him, and believe it or not, both my sons had one small patch of dry skin which looked like exema on their chins.

[bmom]

Tlk,

Just my two cents, but I don't think I would stop looking into the PANDAS stuff. Perhaps find a doctor that does not think titers are the main criteria. I think I would see if antibiotics would help his symptoms on a daily or weekly basis if you haven't tried this yet.

[tlkinser]

Thanks for your replies. I never thought that the spots could be a virus; I just assumed his skin was irritated from the salts. ?? How did you get the virus diagnosed and what did you do for it? My son seems healthy as a horse other than the tics, but I was sick a few weeks ago with a flu-like bug for several days. I guess I will keep my eye on the spots and take him in if they don't go away or if they get worse.

 

Bmom,

I have not totally ruled out PANDAS and am very interested in reading the info here from others dealing with it. Honestly, other than the overnight explosion and his really strange behavior last spring with the elevated strep titres, he hasn't shown any of the other classic symptoms. All three of my children were dx with strep last Nov and only one of them complained of a sore throat (not my son). I don't think his tics were any worse before or after the diagnosis and round of antibiotics. He has not shown any signs of OCD and has not had the frequent urination that some talk about. Also, now that we have been dealing with all of this, my husband has remembered some "habits" that he had as a child (8-10 yrs old) that would probably be labeled as tics today. His were not vocal and were not nearly as severe as my son's, but he had them nonetheless. He father is also a very twitchy person- shoulder rolling and shrugging, nose twitching, etc., so I guess you could say that tics run in my husband's family. If my son had tics similar to what my husband and father-in-law had/have, I would not have as much concern. My son has been moderate-severe (in my opinion) with the frequency of his tics for the past 10 months and I am so worried about the coming years as he is only 5 1/2 yrs old now.

 

I guess I believe that the strep may have triggered the severity and intensity of the tics last spring, but I think my son has the genetics to tic anyway. I had all of the tests run last fall (hair, urine, stool, blood, saliva) and am trying to get his whole body balanced and well. I pray that we can find a way to keep his tics mild if we can't find a way to "make them go away". I just want my little boy to be healthy, happy, confident, and comfortable. I know we all want that for our children.

 

Thank you for your input. I may call Dr. Murphy back and try to schedule that appt afterall. (Kind of let that go last fall when he seemed to be doing better.)

 

tlk

[bmom]

My husband also has some mild tics and that is why I ruled out PANDAS in the beginning. For what ever reason, I thought that it probably wasn't PANDAS due to that fact. Yet my son seems to have really followed more of the PANDAS path and so I am back to that. I spoke to Dr. Murphy's assistant and she said perhaps my husbands began as PANDAS as well. Good luck.

[P_Mom]

My son was as healthy as a horse with this virus he had too, except for the rash.. Diagnosis was made purely by looking at the rash, and being told it was viral. For virusus, there is nothing you can do but wait it out. It only lasted a few days.

Kelly

[lurker]

Just wanted to add my $.02. If you have a reasonable suspiscion that strep was involved, I, too, wouldn't rule out PANDAS simply because a relative ticced.

 

Personally I don't think they will ever find "THE ticcing gene." In some families it may be a mutated gene that is ineffective for dopamine uptake; in others it might be a structural difference in the ganglia; in others it might be an impaired ability to detox or a weak blood/brain barrier, or immune overreactivity, etc.

 

I think Dr. Murphy's assistant has a point, Bmom. Even if your husband and son inherited an errant gene, it may just be a familial inability to recognize or erradicate streptococcal bacteria. Strep has been around for generations too.

 

Tami

[Chemar]

yes, I would absolutely agree that just because there is a family history of tics does *not* rule out that there is possible PANDAS triggering the tics.

 

Altho my son was dx very quickly with genetic TS because of my husband and his dad's tics, one of the first things we did was to go to Dr Murphy for testing as my son had the classic PANDAS type onset...explosive tics and OCD etc

In his case he had no indication of elevated titres and has never had strep throat even....but I feel we would have ignored a very important test had we not ruled out PANDAS

[bcase]

Is there any way to tell if my daughter would have an increase in tics if I tried the Epsom Salt baths. Night is her worst time and I would like to try them but I don't know what I would do if they got worse because of it, any suggestions. Should I make an epsom cream and try that first? Thanks for all the help...

[tlkinser]

yes, I would absolutely agree that just because there is a family history of tics does *not* rule out that there is possible PANDAS triggering the tics.

 

Altho my son was dx very quickly with genetic TS because of my husband and his dad's tics, one of the first things we did was to go to Dr Murphy for testing as my son had the classic PANDAS type onset...explosive tics and OCD etc

In his case he had no indication of elevated titres and has never had strep throat even....but I feel we would have ignored a very important test had we not ruled out PANDAS

 

 

Thank you Chemar for this info. I guess I am so confused about everything... I had my son's blood levels tested several times this summer and by the end of the summer, his titers were normal. He was still ticcing very hard even though the strep had been treated with antibiotics. What kind of testing will Dr. Murphy do? Is there a test that will tell us whether or not my son had undiagnosed strep in his body for a long time before these tics started?? I guess I am just wondering what she will be able to do for us? We are more than willing to go see her, and I have been in touch with her office before, but I finally just let that go as I was moving towards an acceptance of the TS rather than still focusing on the PANDAS.

 

I know I don't make any sense right now, I am just so confused. Thanks for any insight that you can provide.

 

tlk