Broken Spirit

[Cum Passus]

Hello... Our son will be 13 this week, and for 11 months now we have been living the nightmare that you all have been through, or are going through. We have done most of the things suggested to do to help, from this forum, and have not seen any improvement. It has gone from bad to worse, and I feel I can't do this any longer without help from you all. Our son has the most horrifing vocal tic, he sounds like a prehistoric bird trapped inside our home. I have cried buckets, and had the hardest time peeling myself off the bathroom floor just to feed my children. My husband had TS as a child and for the most part has out grown it. He did not have it as bad as our son does. We are happy that my husband now knows there is a name for the odd things he did as a child. We also believe my husbands father also had something, as an uncle has told us my father-in-law was called bunny nose as a child. Up until last week our son was not on medication, but things have gotten so bad we felt it was our last hope, and so have started him on meds. My spirit is broken because we have not seen any improvement on meds eiither. I'm so scared for him, his school calls once or twice a week.

Thanks for letting me share our pain.

 

Our pastor said compassion comes from two Latin words (cum passus) he said it means (suffer with) I can tell there is a lot of compassion on this forum, and I know you all live and breath your children's suffering.

Thanks again,

Cum Passus

[Chemar]

Dear Cum Passus

I am so glad that you have found us here as I can offer you hope and encouragement

 

Reading your story could mirror our own.......but I have good news in a truly positive outcome for my son!

 

He is now almost 17, and, although yes, he still has Tourette Syndrome, yet, seven years ago I was in despair and today I rejoice!! He has not only overcome, with much prayer and a healthy diet, supplements etc, the severity of the TS, but has developed into a compassionate and mature young man who openly acknowledges that the hard road he has travelled with this disorder has actually made him a better, not bitter person.

 

We too realised that both dad and grandpa had TS after my son's dx, and yes, like your husband, mine finally had understanding of the "bad habits" for which he was ridiculed and punished as a child

 

 

 

My son's TS had such a tramatic onset just before his 10th birthday that we had him tested at a leading research university hospital here in Florida, for possible PANDAS, but the results were negative

 

Much to my sorrow, we did try medications for a year, but honestly, not only did they not make things better, they actually made things worse as my son exhibited just about every side effect imaginable, and also experienced drug induced psychosis

 

I remember clearly the day when I collapsed on my knees by my bed and cried out to the Lord to please help me to help my son and by an extrordinary sequence of events, I found out about Bonnie Grimaldi's supplement treatment success with her own child, and we began, with our docotr's help, to withdraw the meds and start the alternative treatments! The improvement was so dramatic that to me it is nothing short of miraculous

 

A while later, a friend gave me a copy of Latitudes magazine and I also then came to this website and learned so much more about optimizing my son's health and so helping his TS go from so severe and debilitating to now so very mild.

 

So do be encouraged! Mine is not the only success story here.........we have many members who, by many methods, have seen dramatic improvement for their children. Be sure to ask specific questions here and also tell us what you have tried so far, so that others can give their imput based on their experience

 

I am going to bump up a thread from 2004 in which I document the treatments that helped my son and I also have an updated version of it at NeuroTalk

http://neurotalk.psychcentral.com/showthread.php?t=1144

 

I sure do understand how you are feeling Cum Passus, but I also know that you finding this forum is not just by chance....do you see that light at the end of the tunnel?

 

God Bless you from a mom who sure can share your name!

[kim]

Cum Passus,

 

I wanted to share that I was talking a to a Mom this morning who lost her son this past Spring to leukemia. He was 9 yrs old, and had been through a bone marrow transplant and more medical procedures than I could imagine in a life time. She is greiving deeply, and others are avoiding the subject now. She is feeling very unable to move on. This family lived across the road from us, through the majority of his illness. He was a real testiment to life. You would not believe the pleasure this child brought to others and experienced himself, inspite of his illness. He taught myself and my sons a great deal.

 

I'm hoping that this won't make you feel worse, but help all of us to realise that our kids, with jerks and noises, are here for us to hug,love, stay strong for, and support. There is no doubt that anything that threatens our kids health/happiness, tears our hearts out. TS can be awful to deal with at it's worst, but there are almost endless things that have helped others get past those rough phases.

 

If you could describe a little more about your sons situation (is the vocal his only tic?), and what things you have tried without success, maybe others could respond with some helpful ideas.

 

Have you tested for yeast, are you using any supplements, tested for allergies, or food sensitivities etc.?

 

I'm so glad you decided to post and share feelings that the majority of us have dealt with, or are currently dealing with.

 

Support for yourself is essential too, and you have come to the right place.

 

Kim

[Claire]

Cum Passas,

 

It would help us help you if you would post more specifically what you have tried and how you went about it. There has been a definite process of both testing and trial and error for almost all of us. Sometimes we can spot something relevant based on our experience.

 

Also, you don't mention if you went under the direction of an alternative MD. A good one can make a difference.

 

The darkest hour is just before dawn...

 

God bless.

 

Claire

[Cum Passus]

Thank you, It is so nice to let this off my chest. We started out on vit. then with the help of a Integrative MD we started over. She had him take a vit. B by Standard process he went nuts on that. I can only say that might have been the proprietary blend of bovine liver and porcine stomach & brain. Did the fish oil, mag/tar, cal. and zink He used Bonnie's vit. but got a rash, so we tested for allergies. Peanut a biggie, soy I guess that might be the ingredient that gave him the rash. Corn, cat, and goldenrod. We did a pyrrole test (neg) Celiac desase (neg) Took out all bad stuff, color, art. flavorings ect. Had hair tested came back very high Chromium & low arsenic.

Detoxed for that, but it seemed to make things worse. We did keep it up as I understood that sometimes detoxing can do that. Strep titers (neg) Yeast (neg). Still giving him the salt baths. Started Resperdal last Sat. Will start over again on vit. if I can get him to a point of some relief, because I can't tell whats working and what is not. Thank you Kim my husband is always telling me to be thankful it is only TS.He has some movements but only when it gets late. So what do you think chemar, is it a gene thing and I won't see much help until he grows? By the way he is very small only 73 pounds, and last year this time he didn't even have his two front teeth, will be 13 on Thurs. Thank you so much.

 

C.P.

[Chemar]

Hi

yes, it seems clear to me that there is genetic TS

 

however, that doesnt mean that you cant help things improve for him

 

personally, I am anti animal organ supplements and so I would not go near the bovine porcine stuff as supplemental!!

 

also, there is quite a lot of info here re fish oil intensifying tics for many people with TS

ditto to B complex...many find it better to supp individual B's rather than to take it as one complex

 

Has this Integrative MD ever treated anyone with TS/tics before?

 

also, have you tried using the essential supplements like mag/cal/zinc etc without them being Bonnie's supps? I have the greatest respect for her and I know her products have helped so many, but there are some people who do react to them, as your son seems to have. I also believe it is of value to gradually build a supplement regimin by introducing them at low dose and individually until the optimum is reached

 

also so important to determine baseline levels because the last thing one wants to do is give extra of what there is already too much of and vv

 

dont give up! and most importantly, just keep loving your precious child and try not to become obsessed about the tics (yes, I know those loud vocal ones are oh so hard to not notice!!) but you know the more you focus on it the more he will do it...that is just a given!

 

Have you ever read my friend Lara's comments on tics........it really does help one to get a good perspective on things

http://neurotalk.psychcentral.com/showthread.php?t=1486

 

we are here for you...........

[kim]

C.P.

 

Did your Dr. do blood work? Was zinc tested? Many here have found a low zinc status, and this can also be involved in slow growth rate. I know you said that your son was taking a zinc supplement, but sometimes it can require a larger doses (with Dr. supervision) over a rather lengthly period of time.

 

Could you comment on your sons diet? Does he crave anything in particuliar like sugar, carbs, fruit? Does he avoid protein, or does he seem to have a well rounded diet? How did your Dr. test for allergies? Was it blood work (sensitivities), or injections/skin pricks (allergies)? How was yeast testing done? Blood or urine?

 

Sorry for so many question! Sometimes different Dr.s have different ways of testing. Some here, have a lot of experience with what tests are most reliable/beneficial, and maybe something was overlooked?

[Claire]

I would like to add some things...

 

1. My son just turned 13 and he is 120 and 5'6". I say this because, as Kim pointed out, that for a while he had virtually stopped growing. He was low in zinc, which is known to stunt growth. [Labcorp zinc serum test]. We also had to supplement alpha ketoglutaric acid, another deficiency that we found, also known to stunt growth. Finally, although he wasn't celiac, he was allergic to wheat (both IgE and IgG tests). While removing the wheat did not help his growth, adding digestive enzymes [houston nutriceuticals] seemed to do so. We tested for and did all 3 measures at the same time and he grew 11 inches in 2 years, or 5.5 in/year, which is double the normal rate. He caught up and is 90th percentile now. It took a lot of zinc (75 mg/day), but we took regular measurements, and his doctor supervised.

 

2. What 'detox' did you do? As Kim asked, what food sensitivity tests? There are so many foods to be sensitive too, it may be important to do the test that covers 100s of them.

 

3. It sounds like the only test you did for metals was the hair test? If so, I am sure you know that the hair test gives many false negatives. I think metal toxicity is the single most overlooked thing by many naturopaths. I really recommend the porphyrn (non-invasive) urine test for mercury toxicity that Kim posted on. Emailing contact @labbio.net will get you a kit. $115 for the test.

 

4. Finally, my 'unpopular' closing. Given that our kids are the same age, I have to ask...Does your son play a lot of computer games, especially flashy games or games on a CRT monitor or TV screen? This is an age where they can spend hours a day there. My son's tics COMPLETELY disappeared (no supplements, no other interventions) with the removal of all screens for a week. Coincidentally, I have bumped up a recent thread on this. For many this is a last ditch resort, but since you are moving to drugs, it might be the time to try it if you haven't already. For us, it solved the immediate problem, then we treated the causes of the photosensitivity, and ultimately reintroduced the computer/TV/movies with no limit (other than parental prudence for general health). Still no CRT screens, but other than that, it will be 3 years next month since he had any tics. Honestly, for all you have done, this is what I would do next for 7 days if your son is motivated or can be bribed in some way.

 

Claire

[kim]

Claire,

 

I was thinking of Houston enzymes too. They haven't helped improve my sons limited food choices, but sure seem to help tics and tummy aches.

 

I didn't answer your question about the test arriving, sorry. It came Wednesday of last week. It took forever. I haven't even opened it yet.

 

I wasn't kidding when I said, I hope it was here quick, or I would lose my nerve!

 

That lab must have gotten awfully busy from the time I first heard of it.

 

I will get it out this week.

 

Question is...what will I do if the results are not good

[patty]

My heart goes out to you. I cry when i read your story. I know what you are feeling. I too felt like it was the end of the world. I often cry myself to sleep. But I kept praying for wisdom and I think I am slowing finding answers.

 

I have to tell you, don't give up. No matter how hard it seem, stay on course and one day you will see result from your hard work. I find this board very helpful. There is a wealth of info here and people are supportive and very responsive. Since I have signed on on this board, my stress level has decrease drastically because now I know there are people out there just like me and they are finding ways to eliminate or reduce the tic/TS symptoms. There is light at the end of the tunnel!

 

My son had an acute sudden onset of head nodding tic then later developed other minor motor tics and vocal tics. My ped neurologist didn't offer any answers other than wait and see. Three weeks later, my son's head tic was giving him headache and neck pain. So I decided to seek alternative treatments. My son started acupuncture to relax his nervous system, chiropractor for his neck pain and headache and cranial sacral therapy. Within days, his tics was gradually declining. We later add Chinese medicine for a month, along with b1 and b12. Three months later, we shift gear and started homepathic medicine and NAET treatments for his food sensitivies and within these 3 three months he experienced more symptoms. So now, my son is back on chiropactic, using a HEPA filter and taking calcium & magnesium supplement. And he is doing much better.

 

Since your son experience more symptoms with the ND. You may want to try acupuncture and chiropractic since it is non invasion.

 

Patty

 

 

You mentioned your husband and his dad had TS as a child but outgrew it as an adult. Can you give me more info.? What were their symptoms - motor and/or vocal tic(s)? How long did it last? I am very interested as it is very encouraging to know that TS or Tics can be outgrown.

 

Thx!

 

Patty

[Cum Passus]

WOW!!! Claire thank you, I never thought about his growth because my husband was very small as a child he said he had his growth at around 16. He was taking 10mg a day of zink. Yes he only had the Ige test the IGg is next on the list to have done. I was beginning to think nothing would help because it was passed down in the genes. Thanks for the medal kit info I'll try that. About the T.V and videos, we only got a computer about 3 years ago and I didn't let them play much. We don't have any cable or dish so they don't watch T.V much a Lucy or Waltons video on Fri. night. We did do the two week no T.V/video test (no change in him) during that time. All summer he listened to the baseball games on the radio. He loves baseball and football. Our son seams so healthy he was a great ball player and can do most sports vary well. He doesn't get sick much. His diet was always good I am a stay at home mom and thought we ate well, he loves fruit,vegys,ribs, steak, not to much fish tho.. He would like to eat all the goodies he can't have but I would not say he craves them. He does want to eat all the time. I was hopeful that would be a sign of some growing soon. Funny thing I did a test starting in Feb. charted his growth on the 20th of every month, sometimes when he seemed to be going through a waxing I would chart that date too. And would you believe he would grow one to two cm almost over night. Patty yes my husband out grew his TS so much so that I never noticed it. The only reason I know now is because of all the reading I have done. He will say (Buddy)when he talks to our son or to other men. if they are strangers he says (Sir) sounding respectful. To myself and our daughters he calls us (love). I always thought they were nicknames now I know they are his hidden tics. My father-in-law might blink but not that bad he would click his teeth. I'm hopeful as my father-in-law is a smart man and was the director of the I.R.S. he has been retired for 17 years now. Our son seems to be very bright, hard to tell how he will learn while making so much noise. My mother-in-law has been dead for 5 years now so I only know about my husbands tics from a baby book she kept. She said he shook his head that lasted 2 years. his vocal was what she called "He makes noises from the time he wakes up until the time he goes to bed, all day long" I was so happy to find that this summer helped me out a lot. Hope I covered everything thank you all very much. I keep praying the Divine Physician will take care of this, and so thankful for your help I know God does not want us to stop searching.

 

Blessings

C.P.

[Claire]

CP, Kim, and Patty,

 

CP,

 

First, thanks for both the feedback on TV and on artificial ingredients. I added both inputs to the survey thread initial posts. We need to know as a group what works and what doesn't work, to keep newcomers focused on trying the things that have been most effective for the entire group. So it is good to know when things don't work also!

 

For growth: Funny, because I chart my own son's growth around the same time each month! Re the waxing and growth, that makes sense, since growth depletes zinc. You can get the alphaketoglutaric acid level results from the Great Plains OAT (Organic Acid profile)...needs a doctor's signature. Metametrics has one through www.directlabs.com too, with no doctor signature. The zinc serum test can be gotten through Labcorp (or any lab?). Again www.directlabs.com has this for no doctor's signature. Enzymes isn't really a test, though you can test for gluten/wheat sensitivity through a stool test (www.enterolabs.com), no doctor's signature. But the enzymes help with overall nutrient absorption. Anyway, I heard it was important to correct deficiencies interfering with growth before the puberty growth spurt ended. It sounds like your husband was different there, but it would personally make me nervous to just wait and hope that it is the same... By the way, 120 may sound 'heavy' but my son is very lean and muscular. Actually, we are both almost exactly the same height and weight now. (I am a hair taller and a hair lighter).

 

Some people think that teen behavior improves because the zinc is repleted once growth fades (low zinc can cause quicker tempers). That same theory could also explain post-teen improvement in tics.

 

Why can't your child have candy again? Are you avoiding sugar also? My son will get candy on Halloween. www.smartsweet.com just came out with a chocolate bar with erythritol (and a little fructose that apparently doesn't affect blood sugar). They never have artificial ingredients. So I ordered it. I will post if it is decent. Lots of candies with no artificial ingredients out now, but we have to watch the sugar. I just found a xylitol fudge recipe and I want to see if it is decent too.

 

Kim,

I understand about the porphyrin test and your nerve...it will be there when you are ready. As I mentioned, I started EDTA this weekend. Really, everything I read says that it is so safe, so I am highly optimistic. I am still a bit freaked out that mine is so high. I am really glad that the enzymes did help with the tics. Somehow I don't remember that...either too long ago, or I wasn't reading the board when you posted it.

 

Patty,

 

I will start a survey thread on homeopathic/chiropractic/accupuncture/energy methods/eastern medicine effectiveness!

 

Claire

[quan_daniel]

C.P, and all

I can only document what has helped my son.

I have not used or found a Alt Med Practitioner.

I do think if you find one keep that doctor. They are hard to come by.

Dragging the kid to see many diff doctors also contributed to doctor phobia for my son.

He is now 7 but started ticcing at 4 1/2.

 

The last year I would say minimum waxing at best.

We know what triggers his waxing. THe predominent is stress. He has a lot of fears in ghosts.

He is shy specially in front of stranger. He has sensory issues from low noises.

For the last year I have worked with him on all these issues such as talking him through situation and

encouraging him. Most night we would close the light for 10-20 minutes for him to acclimate to being

without light. Of course what helped him the most would be the following:

 

MAG/ZIN from kids calm.

Houston Enzymes for food sensitivity(I don't think he has allergy like peanut but he has gluten/cassein issues

per testing)

Probiotics for immune system.

Omega 3 from flax oil. He is sensitive to fish oil I think.

1 natural (not synthectic) multi vitamin.

 

1 foot bath (epsome salt) 20 minutes and one body bath (epsome salt) 10 minutes.

 

All these have helped him to stay calm and relax.

 

The kids calm I give 3 times a day.

--------------------------------------

Supplement Facts

Kid's Calm

Serving size: 1/2 Teaspoons 2 - month supply

 

Amount Per Serving

 

% Daily Values

 

Magnesium (elemental from magnesium citrate)....85 mg 65%

 

Vitamin C (as magnesium ascorbate).......... 200 mg 444%

 

Zinc.................2 mg 20%

 

No sugar or artificial sweeteners added.

 

Ingredients: Magnesium Citrate, Magnesium Ascorbate, Zinc, Stevia and Natural Orange Flavor.

 

Contains no yeast, dairy, egg, gluten, soy, wheat, sugar, starch, preservatives or artificial colors or flavors.

 

--------------------

Concerns...

 

Prolong use of enzyme...Kim, I hope you can help me out here :-)

Zinc how much to give once reach teen year , claire and chemar perhaps u can help.

 

Who knows by then , we might have found a good Alt Med Doc.

 

Our immediate family or close relatives do not have TS(FYI only and not for boasting).

 

Thanks