CDC Vaccine Data Leads Scientists to Shocking...

[Guest GL&L-mom]

Chemar,

 

Thanks for the advice about not giving 5HTP while on prescription meds. I was planning to purchase it, but would have checked with a doctor before starting it. I am terrified of taking him off the Luvox because his OCD is the most debilitating of his problems. I know we'll have to take him off of it gradually with the doctor's input. Not only do none of our local physicians support my attempts to find alternate treatments, they seem angry that I'm trying.

 

I have noticed from your other posts that my son's issues were similar to yours. I am still dazed by all the information and how you keep it all straight. Can you tell me what occupational therapy does? As with much of this new information, I remember reading about it, but no details stuck with me. We do all those things you described - remove labels, avoid certain lights and smells and my whole family has worn their socks inside out for at least three generations!

 

You asked about the dexedrine. I was concerned that his tics would worsen, but so far they haven't. I'm wondering if he is doing well in this area because of the Bonnie vitamins or the fact that he and his brother have been on screen restrictions for a month for their bickering. (Screen restrictions in our house mean no tv, video games, computer or handheld video games.) These things definitely trigger my son, and they make the non ts sons more irritable. The med hasn't changed the ADD much either though. It is just getting so difficult. After all the tests come back, I'll know better what path to take. I definitely know I want him off of all the medicine. What you said about the rewards of seeing a despondent child become happy again is so motivating to me, because my little fellow is extremely sad lately.

 

Thanks for sharing your knowledge. My thoughts and prayers are with everyone reading this forum.

[Chemar]

The doctors got angry with me too when I suggested that maybe the meds were making things worse, but, when my son nearly died after they started him on Zyprexa........I was the angry one and simply said "ENOUGH"...best righteous anger I ever had as my son's life was restored and improved from that day on!

 

Occupational Therapy varies from situation to situation and, for my son's SID, she spent a lot of time with him on sounds and textures.....it is basically designed to strengthen the sensory system and so make it more tolerant.

We also would brush my son's skin with a soft brush twice daily and this was SO beneficial....arms and legs and back.......dont know exactly how it works but it was really helpful to him.

Ever since the OT, he hasnt reacted nearly as strongly to the sensory stimuli that used to set him off.

We just couldnt afford to keep going and so did the basic six weeks course and then continued with the excercises etc that we could on our own.

 

I really do feel for where you are at and will keep you in my prayers for wisdom and guidance as to how to proceed......I too was scared about not only removing the meds, but the withdrawal too........yet, when my son's sense of humor first shone thru again after that year of zombied psychosis..........oh!! the joy.

 

Thankfully you are already on the vitamins etc....and as to the 5HTP...we started it within a week of ending the Luvox(he came off the Luvox over a weeks gradual reduction)

We started the 5HTP at the minimum dose of 50mg each evening, and it worked immediately...and we have never had to go higher!

 

Do stay in touch and feel free to email me from here and I will reply with my email address so we can communicate.

it is so very important to have support at this time, and I am thankful that you have found Latitudes.

 

blessings to you and your son

[Claire]

GL&L,

 

When you reintroduce the TV/Computer, please pay special attention...the TV/computer games triggered some compulsiveness in my son as well as tics. The effects of the exposure can last up to a week.

 

After 1 month without TV/Computer, I would expect to see some overall improvement in tics, since you say you notice that they trigger them. (A few of us now have noticed this). But they are at the same level as before the restriction? Maybe it was offset by the dexedrine which I guess can worsen tics.

 

I know I posted this on another thread, so I won't repeat myself. But I hadn't realized he went a full month without computer/TV. Does this include exposure at school?

 

Claire

[Guest Ronna]

GL +L mom,

 

I understand completely the struggle of dealing with the doctors. My son has 3 doctors. A pediatric rheumatologist who I quite like and he is "open" to alternative treatments. He uses accupuncture with some of his rheumatory arthiritis patients. I think he is open to vitamins etc because at one point we sort of reached the end of the road for mainstream medicine. I think he thought "go for it" because what we are doing is not helping much. Kurt also has a pediatrian who follows him who I loathe (I just a follow-up appointment card in the mail for the 23rd). She has got to be the most close minded physician with absolutely no communication skills. I might as well be talking to a peice of cardboard. Then we have a doctor who specializes in infectious diseases who addresses Kurt's PANDAS issues. I keep the pediatrician who I dislike because I am not sure if I will need her or not down the road and in Canada it is hard to get a timely referral to a pediatrician if I needed one.

 

The doctors at times have thought I was nuts...but are more accepting now as you can't argue with results. I am knocking on wood...but Kurt is just doing so well. I am unsure as to what to tell the pediatrician on the 23rd. I REALLY don't think she wants to hear about vitamins so I think my plan is to just keep my mouth shut and just say, "he's doing well right now." But then I think I SHOULD say something in case another kid like Kurt comes along and the doctor could suggest some of the things that helped my son to that parent.

 

Occuaptional therapy helped my son alot. It was probably the therapy that Kurt liked the most also but this may have been because we had such a good occupational therapist. I still use alot of the things I learned even now. Kurt is kind of complicated in that he had Sydenham's chorea as a result of rheumatic fever. His right side of his body was affected so he needed alot of work on increasing awareness of his right side and balance etc.. Kurt has always been right handed but switched to the left when he had the chorea. That was 2 years ago. It is only since starting vitamins that he has started using his right hand again.

 

I limit Kurt's TV etc. quite a bit and this also makes a big difference.

 

Discontinuing Kurt's meds was very difficult. Once we stopped the Orap I think it took up to a month to get through the "withdrawl" although our doctor said that children do not have "withdrawl symptoms from Orap. Anyways, it took about a month to "adjust". I do not want to sound anti-med and they certainly have thier place and were a big help to us at one time. However, now that Kurt is not on any meds it feels like I have my boy back. His eyes are so much brighter.

 

Making the decision to discontinue meds and try other treatments like supplements is difficult. For us it has all been worth it. I do not know Kurt's future but for now he is med free and I am so glad I have found alternatives with vitamins. I should say as well that I did a food elimination diet and we found Kurt was sensitive to dairy, eggs, corn and chocolate. Eliminating these foods has also made a big difference.

 

There are answers. It takes alot of hard work, and detective work but it has been well worth the effort for us.

 

Take Care,

ronna

[GL_Lmom]

Chemar,

 

Thanks for the warm and knowledgable reply. Now I remember reading about OT. It's interesting about how brushing helps. Sometimes Luke can calm down during bad ticcing times when I just lightly brush his arms and back with my fingernails - haven't noticed whether it helps the ocd as well.

 

Claire

 

I'll be sure to watch for compulsiveness when tv is reintroduced. It's actually the video games that I suspect. It's immediate and obvious when he starts playing them. Also some of the Japanese cartoons like Pokemon are triggers as well.

 

He still had computer class at school twice a week but they are mainly working on word processing. At home sometimes the tv would be on with a Wiggles video or something for his little brother. Neither of these seemed to affect him at all. I think it's the rapid blinking that sets him off.

 

Ronna

 

When Luke first started showing symptoms, I researched PANDAS and Syndenham's Chorea. I commend you for all you've been through. What a long process. I'm glad your son is doing so well.

 

Before you did the food elimination diet, were there obvious signs that something he was eating was a trigger? Did you have delayed allergy sensitivity tests first to see what the likely culprits were? I'm not confident I would recognize the trigger as I've never noticed any kind of food reaction.

 

Good luck and blessings to all.

[Chemar]

Hi GL&LMom

 

have you read Sheila's interesting and informative article on Tic Triggers?

Here is the link

http://www.latitudes.org/articles/finding_triggers.htm

 

It is actually quite amazing when one starts keeping notes on what may trigger not only tics but also the OCD and moods....we were able to start identifying a number of things and saw dramatic results by eliminating, or at least trying to minimize them.

 

keep up the good work in learning as much as you can....but dont let it all overwhelm you....just a few little steps every day is GREAT progress.

 

blessings to you too

[Claire]

GL&L

 

We have had discussions on this thread and Braintalk on the computer games

 

 

Even static computer active such as word processing can be a trigger if your child is sensitive to flicker. This may not be the case for your child, I only point it out because even 15-30 minutes of static computer work a couple of times a week at my son's school was enough to set off tics that lasted all week, due to the 60 hz flicker on the screen. So even though tics are reduced with no TV/Computer at home, when there is still that activity at school, he still had ongoing problems. We had to eliminate it completely for him to have no tics at all.

 

The computer games have another aspect. In addition to potential visual tracking and rapid movement issues, I have always contended that they encourage of compulsiveness because of the repetitive nature, the stress and the 'almost' making a level, only to start over again. For any child with tendencies for compulsiveness, it can bring it to an intense level. I know that my own son would get sooooo irritable and unhappy when he had to quit a game.

 

He plays only games like RollerCoaster Tycoon and Incredible Machines on an LCD monitor now. They don't have 'timers' and levels and thus don't cause problems.

 

Please note--I am not trying to convince you (or anyone) not to stop computer/TV, just to help you better understand the nature of the trigger from my son's experience. You can't tell its full impact without temporary elimination, much like the comments on the food elimination diets. Elimination, then Reintroduction--though sometimes it takes a few days to build up to a reaction, depending on the sensitivity. I just read something on food allergies, where they discussed instant and delayed reactions--this is quite similar. In our case it was so dramatic that we made some life changes. For others, it might not be so dramatic, or may not be a priority.

 

Claire