new to board

[lurker]

I have been lurking here for some time now and thought I should introduce myself. It's actually quite awkward because I am a total stranger to you, yet for the past four months, I've gotten to know you and your children; we've laughed and cried together; and you have helped and guided me through the hardest time of my life. Thank you.

 

I'll try to keep this breif. My son (4yrs at the time) received a DTaP vaccine on a Monday in late September. By Wedensday, he was "twitchy." By Friday, he was sniffing his fingers and clearing his throat . . . a lot! I took him back the following Wedensday for a strep culture and the two applicable titers. The pediatrician diagnosed a mild tic disorder and told me it would most likely go away. When I asked him what I should do, his response was "Start drinking." Fortunately, I don't give up that easily -- you wouldn't let me.

 

Since the onset (I should edit to say, that in retrospect I realize he went through two "blinking phases" of short duration [several days] a year and two years ago, respectively, that flew under my radar) I can make the following generalizations: the tics change; some days are worse than others; they are overall milder, less frequent, and of shorter duration than they were in the beginning. The tics now appear to be sporadic single incidents rather than bouts, and when I see a new tic, it predominates for a couple of days and then retires instead of building in frequency and intensity as it did several months ago.

 

I have read Sheila Rodger's tic bible, removed artificial ingredients, initiated supplements, fired pediatrician, found a wonderful Naturopath, kept food diaries (to no avail), reduced stress levels, initiated wheat/dairy/sugar free diet /begun probiotics on advice of said wonderful Naturopath, initiated Organic Acid Test (results pending), and have an appt for blood draw for IGg allergy testing on Monday.

 

I still feel overwhelmed and have so much to tell you and so many questions to ask, but for now I really just wanted to introduce myself and say thank you. Now, if you'll excuse me, I have to go pick the kids up from school and confiscate some high fructose corn syrup and red dye #40.

 

sincerely,

 

 

Tami

[kim]

Tami,

 

Welcome. You don't sound like a total stranger at all

 

Can I ask, if you and your pediatrician discussed the tic occurance in relationship to the vaccine? I'm just going to venture a guess, that he didn't suggest reporting it as an adverse event did he? Errrrrrrr

 

I hope you will be sure to get a copy of your sons OAT. Its always nice to be able to sort of compare notes. I remember bits and pieces from what others have posted here, but don't have the Great Plains (is that where yours was ordered thru?) for either of my boys.

 

Glad to hear that your sons symptoms don't seem to be escalating.

 

Did you fire the Ped that said "start drinking?" Sad to say, but I would almost have to rank his advice, a little higher than what we normally hear!

[Chemar]

welcome Tami

 

thanks so much for sharing your story and adding your voice. It is going to be good to get to know you and to see your progress on the path to wellness for your child.

 

LOL yup...definitely a pediatrician that needed the boot eh!

[lurker]

Hi, Kim

 

My pediatrician said the vaccine is completely unrelated. I believe it caused/aggravated/exacerbated the situation. Even in the face of credible evidence, I think the most they will concede is "predisposed genetic vulnerability." That's just a survival-of-the-fittest concept. Imagine if they used that defense for Chernobyl or Love Canal in explaining why some children got cancer and others did not.

 

As far as firing the pediatrician, it had less to do with the "start drinking" comment, and more to do with the fact that I saw people here who found professionals in other fields who were more openminded. I found a naturopath who has been to medical school, has a license, is willing to think outside the box, and isn't influenced by large pharmaceutical companies. He even read my copy of Tics and Tourettes, developed a relationship with Great Plains, and (gasp) offered me a discount for inadvertently finding a better lab for his practice. When I get the OAT results I will definately post them here.

 

As far as "escalating symptoms" go, we'll see. My little man is eating a handfull of jelly beans as I write this. We are obligated to go to Chuck E Cheese tomorrow afternoon (games only, eating at home). Also, I wanted a really clean baseline on the OAT test so I discontinued ALL supplementation for 72 hours before and there is the acute stress of the blood draw next Monday. I think I will go take the advice a wise old pediatrician once gave me . . .

 

 

Thanks, Tami

[CSP]

Hi Tami,

 

Welcome, I'm glad you came on board. It is so good of you to help us parents who have trouble with the whole immunization thing, and share your story. I have my son's record and he had the DTAP at 1 1/2 yo then at 6 yo with no problems. then at 12 he had the TDAP and Meningococcal vaccine and whet nuts on me. He screamed for a year.

 

Its funny how you say you feel like you know us. I must have been reading the posts here when the Ayisha Woods (sp) song (Big Enough) came out, because that song reminds me of Chemar. I have no idea why.

 

C.P.

[faith]

Hello Tami and welcome,

I always wondered when someone was going to use "lurker" as a user name!

 

Well, its good of you to relay your story, you have already added something valuable for the rest of us, and I'm glad that the info you read here has given you such a great start. ....

 

".....I have so much to tell you......"

 

Well, I am just the person to draw it out of you! ...(but you must already know that!! )

I assume your son is about five? Am I understanding you have implemented the things you stated for about four months now? How is he doing now? Does he still have throat clearing? have you seen any improvements so far, and when you say "they are shorter duration and less intensity", do you attribute that to anything you have implemented, or just passage of time? How did you get to have the titers testing so quickly after the strep - did your doctor know what these tests were and know of PANDAS? What were the results? (gulp and big big breath, whoo!!)

 

You have already mentioned that you HAVE seen some blinking prior to the episode that started after the vaccine, so that is interesting to note (I would have asked you that, so thanks.) Does this naturo have experience with tic disorder, and may I ask what probiotics he recommended and if you could find out from him when the best time to take them, I'd really appreciate that, as I have been trying to find this out. Also what, supplements and testing, if any, did he recommend?

 

sorry for so many questions, but I can't help it!

 

Thank you

Faith

[MARYANN]

Hi, Welcome,It's a great forum to get advice. Hope you find some answers that you are looking for.

CSP, My daughter also started ticing after she had both those shots. I wish they would do some kind of study. Maryann

[bcase]

My daughter is 12 years old, and has had transient tics since she was five. She is due next week to have her 12 year shots.

I'm really scared about giving her them, especially because she is having an episode right now. I always thought I had to have her immunized. Is there a way around it? I live in Massachusetts....

 

We had a blood draw yesterday for celiac and food allergies (Iga and IgG) - Don't know if that will show anything....

 

Any advice on the shots.....????

 

Thanks,

 

Bcase

[lurker]

Faith,

 

He is in fact five (He may even share a birthday with "Tigger"). As far as knowing to request a culture and titer for strep at the rapid onset of a tic disorder, I learned that here! My pediatrician had heard of PANDAS, but never suggested the testing; it was done on my demand. (Testing was negative for strep.)

 

I have been doing a variety of things for the last four to five months, and he is doing better. The throat clearing is gone. It was the most persistant single tic he's had. It lasted for three months. As it was winding down, it only surfaced at bedtime and during meals.

 

When I say shorter duration and less intensity, I mean a bout of tics (for example blinking) is 1 to 3 blinks, not 40. The bouts occur less frequently over the course of the day (5 times, not 50). When this first started, I watched him ride his bike into a tree because he had to sniff his fingers. Now he has tics, but the neighbors wouldn't pick up on it.

 

I'm doing better too. At first all I could picture was the full-blown David E. Kelley version of Tourette's. Now, I have hope that his tic disorder is winding down and won't interfere with his lifestyle too much.

 

The best advice I can give anyone from my experience is cautionary: Don't do too much too fast. I did. He's doing better, but why? I treated so aggressively, and haphazardly, that I can't pinpoint his triggers.

 

The naturopath has very little experience with tics. I feel as though I am still co-directing the treatment. I think that it would be unrealistic for anyone around here to expect to find a doctor who knows more about tic disorders than they do. (That was meant to be a compliment.) His probiotic of choice was HLC MindLinx. He didn't seem to care about timing, but suggested mixing into a little smoothie of some sort. As far as the supplements, fish oil with high EPA, and E3Live, which is a blue green algea which is loaded with vits and mins.

 

His testing suggestion was IGg allergy, through a lab he suggested. After he read the tic bible, he contacted Great Plains. He thought their allergy testing was comparable and he loved the OAT test. I'm in the process of doing both and I added the pyrole test as well. I'll post about results as I get them.

 

Regards,

 

Tami

[CSP]

Bcase,

 

I'm working on getting my youngest exempt from vaccines, and so far what I have found out is in the state of VA and also MA, one can have their child exempt for family history of vaccine reactions, severe allergies, autoimune or neurological disorders. Since TS is a ND I'm working on that one . I do have a DR. dx of TS for my son. I don't know how hard it would be to get exempted if you did not have the dx. Hoping this will help with the other child because my husband has TS too.

 

Please do see what you can about getting her exempt I can't tell you how bad our son was after those shots. I had at times wished the world would end. I'm a very happy person have been all my life, and I could never think what could be so bad in ones life that they wished they were dead. Now I know life is not fair sometimes.

 

By the way he even turned yellow in some photos I have of him 2 years ago, after those shots.

 

C.P.

[annag]

Bcase,

We are also due for 12 year old shots in a couple of months. But someone suggested here for me to contact our State Dept of Health Services to see if Meningitis vaccine is mandatory (NJ). I did and they told me that it will become mandatory for children entering 6th grade after 9/08, since mine is already in 6th grade- we don't need to get it. They even faxed me a list of mandatory shots that I might bring with me just in case to the pediatrician. or, I am considering may be not going at all I don't know what use she (the pediatr) will be for us at this time .

Good Luck,

Anna

[P_Mom]

Hi Everyone!

Just a note about vaccines. I live in PA, and all I had to do to bypass the shots was to get a note from our pediatrition stating we did not wish to immunize anymore due to health concerns. That was it in a nutshell and the school accepted it with no problem. Now, I don't know about the other states, but, it was simple here. And these were also "mandatory, PA State law "required" shots," that we easily bypassed. If you feel in your gut that you should not immunize, then, don't do it... no one can make you!!!

 

C.P.

I got tears in my eyes when reading your statement about "wishing you were dead," and then someone else's about "wishing the world would end." When this hit us out of the blue this past summer, it was so sudden and severe, I had those feelings numerous times. I have been through some pretty rough things in my life (I know, who hasn't), and I always managed to keep my head and spirits up pretty decently through them all and considered myself pretty strong. This particular trial with the kids had me flat on my back. I had NEVER been so low, down, scared, confused, heartbroken, and had feelings of hopelessness. I have great faith in God and I felt like my feelings were letting him down, but, I tried so hard to be strong, but, just couldn't control my feelings. I know he understands, afterall, he's been there. But, being someone who had never, and would cringe at the thoughts of people wishing they were dead, well, there were several days I thought it would be so much easier if it all would just end, if I would just end. It was soo hard. Now, rest assured, I would NEVER do anything like that, but, I was shocked to have those thought cross my mind.. I also had thoughts of running away, but, again, would NEVER do it. I just pray, and pray, and manage to get by every day, and will continue to do so no matter what. "What doesn't kill us makes us stronger," well, I'll be one tough chick when I get to the end of this tunnel, with a much greater appreciation for all the important things in life, and not sweating the small stuff!

 

Kelly

[CSP]

Thanks Kelly,

 

I would never wish on anyone what I too was feeling, but it is nice to hear I'm not alone in what I was feeling. Thank you.

 

I remember one day I knew I had to snap out of it, and it came when my own father was so heartbroken over me, and how he wished he could fix everything for me. I knew I couldn't watch him tear up any longer. He would say to me "I'm not worried about my grandson, I have to make sure my baby is all right." That was all I needed to hear, I had to get a handle on this. I couldn't let my father feel my pain any longer.

 

God Bless,

C.P.

[bcase]

Hi All,

 

I'm just going through some old documentation and my daughter's vaccination schedules. My daughter had three vaccinations in September 2000 when she was 5 years old (DTP, Polio, MMR). In October of 2000 is when I recorded her first tic, which was a throat clearing one. Which at the time we thought were allergies. I can't believe it. I now believe they are connected.

 

Somebody submitted an article in here that was eye opening. In 1980, our children received 10 childhood vaccinations and the Autism rate was 1 in 10,000. Now our children receive 36 childhood vaccinations and the Autism rate is 1 in 150. That is staggering, and I cannot believe it is not connected.

 

Bcase

[lurker]

Bcase,

 

I am not usually comfortable advising on matters like this, but since you asked . . . be strong. Somebody famous once said, "Vaccines are a lot easier to avoid than strep." Wait. Maybe I made that up.

 

Tami