Great to bad, to worse

[mommaonamission]

Please read this and tell me if I might have done something wrong....

 

About 2 months ago, Pandas made vocal tics explode in my 12 yr old son. We started supplementing with:

-multi vit (heavy in B complex)

-grape seed extract

-probiotics

-indoor allery tablets

 

Noticed my 12 yr old son detoxing, but tics still bad. Then we added:

-L Carnosine

 

After 2 weeks on it, we had 2 weeks of bliss! Majorly decreased tics, overall better behavior.

 

2 week on Carnosine, and overnight...bam they were back. I blamed it on a donut, but here it is 2 weeks later...and still bad vocal tics. Especially the last 2 weeks. It finally began to interfere with school. He began picking on kids and being aggitated and aggressive (complaints we have never had before.)

 

So, we had our first Neuro appt Thurs. Doc did not want to talk about link between PANDAS, tics, or treating anything herbally. I expected this and took his attitude toward natural remedies with a grain of salt. Due to the recent school incidences, I did allow him to write a prescription for Chlonodine.

 

So, here we are 3 days into the smallest dose of Chlondine. Not noticing anything yet good or bad. I just want it to help him through school while we continue to supplement and get his body healthy. I don't plan allowing any other meds if this does not work. Anti-pshycotics are out of the question.

 

Are there any other mild meds you would resort to other than Chlonodine? I have ordered a few supplements from Native Remedies too. I want him off the meds as soon as possible.

 

One last funny thing...even the doc stated there was "no scientific evidence" to support PANDAS, he ordered a blood test for my son to check for any strep remains. I told him everything happend over night. There is no denying something was triggered, and that it had to do with the strep.

 

I am tired of adults giving my son the evil eye. People would look with his other little tics and figured he had a cold or something. But with the loud vocal, they just assume he is a rude little boy. I can understand kids staring, but I am saddened by the adults that look at my son in disgust. We are also beginning Habit Reversal therapy withing the next couple of weeks. I will let you know how it goes. Any feedback would be greatly appreciated. Thanks!

[Guest]

Hi mommaonamission,

 

Sorry to hear your son is having a rough time right now. Is he one that gets extremely excited for Christmas? I know I always was one like that. I'm not for sure what grade your son is in, but if he's a 7th grader does he have semester tests coming up before Christmas break that might be stressing him out?

 

Its possible that your son might not be able to tolerate a multi-vitamin and might do better with individual supplements. Could grape seed extract be bothering your son? I have an allergy to grapes and I'm not for sure if grape seed extract could bother you with an allergy to grapes. If anyone else knows the answer to this one I'd love to hear it.

 

That's just some things I thought of that could be possible triggers. Adults can act just as rude as kids sometimes and that includes teachers who you'd think would be understanding. I think your doing a great job at trying to find the answers for your son. Keep up the great work. Its a lot of trial and error because still with alternative treatments what works for one may not work at all for another.

 

Carolyn

[Chemar]

just wanted to add that if indeed your son is dealing with PANDAS then only the correct ANTIBIOTIC will help him!

 

It astonishes me, with the wealth of research etc available, that there are still doctors who dont recognise PANDAS induced tics!!

 

also

as far as supplements go, IF there is underlying PANDAS or some other issue like pyroluria or heavy metals or yeast etc, then the effectiveness of the supplements is diminished.

 

as frustrating as it is for you now, yet dont give up on trying to keep him on a healthy diet with good supplements while you search for more answers

 

I dont remember if you have found an Integrative doctor yet, but that really is so important if you desire to follow natural treatments rather than the meds.

altho clonidine may not be in the same danger group as say haldol, yet it IS still a strong medication with the potential for serious side effects. If the low dose helps your child, then that is encouraging, but if it doesnt help, and if you notice side effects, it would be good to carefully withdraw it. ( do remember that all these drugs have severe withdrawal reactions and so cannot just be stopped cold turkey...they have to be titrated down.

[brett]

Hi again momonamission, it's Brett. I want to tell you that my experience has been very similar to yours. I have written about it extensively somewhere on this site in a few places. My son is on a medication, and it is called Tenex. I would highly recommend that you look into that if you are going to try a medication. I have a very good neurologist and it was with much thought and research that I agreed to try a medication. My neuro does not use clonidine as he says he feels it is too sedating. Tenex is an anti-hypertension medication (obviously, usually given to people with high blood pressure). It works on the same part of the brain that causes tics. It is NOT an anti-psychotic or in any class of drugs like that. Believe me, I researched all the different medications, and this one by far has the least side effects of them all. No long term damage. Can be tapered off with no withdrawal. Initially when he first started taking the Tenex, he was very tired and out of it, headache and dry mouth, for about a week. He is only on a 1 mg pill that we split, so he gets 0.5 in the a.m. and 0.5 in the p.m. After one week the side effects were gone. His tics have DRAMATICALLY decreased. Now mind you, he still has some tics, no medication will take them away totally. But they are so much less and no longer interfering with his functioning. Right now your son's tics are interfering with his functioning. I know a lot of people recommend meds as a last resort. But I decided to go ahead with this small dose as my son's tics were out of control (physical and vocal) and out of nowhere overnight, and it was with much thought that I said yes. But it has made a huge difference. And now he is functioning so much better, his mood is so much better, so much less depressed and upset. Now while he is doing better I can look at all of the other things that seem to trigger tics and try to lessen them, as well as explore more natural options as well. My neuro thought PANDAS right away on our first visit, but anti-strep titers (I have had them done twice) are negative for step antibodies. Also, a 2 week course of amoxicillin did nothing, now we are trying Zithromax for a month just to make sure. But he still has tics. So now we are looking at a tic disorder. As time passes we will learn more and understand more about what triggers his tics. During that time, he needs to function and the Tenex is doing that for the time being. Please ask your dr. about Tenex, like I said, I think that is the best medication with the least side effects.

[Andy]

If medication is the best treatments for someones child, then great. We ourselves felt that medication should be a last choice due to the facts that the medications were not really designed for our children in the first place, that they only mask what is causing the issue and that they do have side affects and do not always work as well.

 

Now we were told when our child was 4 years of age to place him on meds.

We were told by more then one neurologist that our son most likely will never be in regular education and may need to be home schooled. That was how bad his condition was. What did we do. We decided if we could research what car to buy we could research his condition and how we could try to treat it.

 

My son is now 7 years old. The doctors said he would never be in a regular class in school. Well you know what, he is in the gifted program. We have a child who could not keep his head straight, could not stop body tremors, who could not focus on any object with his eyes with out aid to now having a kid who is reading way above his level and who has won a school art award in one contest as well as a Southern Florida art award in another contest where his work was featured in an art show. Remember this was a kid who couldn't keep his head straight and had tremors 24/7 with a host of other "stuff"

 

Our treatments are all based on medical tests. We test to see what amino acids, what vitamins, what anti-oxints his body needs. We tested on delayed food allergies which basically means he would pass the skin test if gluten is pricked in it but his insides are damaged so he can not digest it properly. We had him tested for heavy metals, and his body was a toxic dump. Which we have been treating under medical supervision for three years now with the last year with a DAN doctor and with chelation. Now we had our ups and downs and we are not out of the woods yet but he is living a normal life "med free".

 

A child could be on meds for life. Why not try to treat the problem, if possible, before going to an end game that has no end?

[mommaonamission]

Wow, thanks everyone. I have a few new things to look into after your responses.

 

Carolyn, thanks for your support. I do believe he is excited about Christmas.

 

Chemar...that makes sense. I absolutley blame PANDAS. That is when the vocal tic exploded. How does the doctor determine what antibiotics he should be on? Can an Integrative Doctor tell me this? We are currently looking for a DAN doctor, is this the same thing? Yes, the Neuro didn't want to hear anything about nutrition or supplementing, and when I told him about the tics appearing overnight after the strep, he ordered a blood test (which I am getting the results for today.) He must have suspected a link too even though he wouldn't admit it. You have been so helpful in the past, please let me know what you think and about finding the right antibiotic.

 

Jeff...I'm so glad to hear your son is doing better. I will definitley look into Tenex. The Clonodine is for blood pressure too. I feel like I've been walking on eggshells since Thurs, waiting for the first side effect. I hate having him on this. I will research Tenex.

 

Andy...what kind of doc ran the original tests on your daughter? Was it a DAN doc that ran the tests? I suspect my son of having somewhat of a toxic dump in him too. He has a horrible sweet tooth, and we can't even keep soda in the house. Please elaborate when you get a chance. It sounds like you really did a good job for your daughter.

 

Obviously if you read this post, you know that things were going very well when I first started supplementing, then things took a turn for the worst a couple of weeks ago. Tics got worse toward the last days of school. Finals were coming up, and there were probably some sweets being passed around that he won't fess up to. He made perfect grades on 2 of his finals and A's on the others. He is extremely bright, but also puts stress upon himself to have the best scores in class. To my dismay, a few days before school was out, I recieved a phone call from his teacher with a concern. Kevin now is experiencing Copralalia. I have read this is very uncommon and it is so hard to look at my little boy saying these things. It is humiliating for him. This is why we agreed to try the med.

 

I am not giving up. I am open to anything at this point. He is scheduled to see a Habit Reversal Therapist after the Holidays. I am searching for a good DAN doctor in the mean time. I am in Austin, Texas if anyone has any suggestions. I just keep thinking there has to be something we are missing. All of your feedback is greatly appreciated. I want to get him well and off the meds asap. I don't know how things can get much worse.

 

Thanks,

Sarah

[mommy11]

Hi Mom-

 

Just want you to know I have been following your story and I am sorry things have gotten worse. Has the Clonidine helped at all? Hopefully, this is the very peak of your sons TS and soon it will just become less and less. Just want you to know there are people out there thinking of you and your family.

 

Happy Holidays to you.

[Chemar]

PLEASE!!!!!wait for a diagnosis before doing "Habit Reversal" or at least research it more.....

 

if your son has developed Tourette Syndrome, whether from PANDAS induction or something else....Habit Reversal would be one of the WORST things you could do for him!!!!!!

 

For someone with TS to be told to stop, or alter a tic makes the tic far worse and can lead to severe psychological problems.

PLEASE research this or wait for a clearer idea of what you are dealing with before embarking on such a drastic therapy, It works for some disorders but is really NOT a good thing for TS

 

An Integrative doctor is not always a DAN doctor but all DAN doctors should be INtegrative.(ie fully qualified MD who has gone on to do a PA or some equivalent specializing in Alternative/Complementary/Naturopathic medicine

[mommaonamission]

I agree Chemar. I am going to consult with the therapist before he sees my son. I just want to feel it out and explore all of our options. We have explained to Kevin that it is a "coach." If I feel like the therapist will make him feel like he can control the situation, I won't continue the sessions. This particular therapist has worked with an adult that had battled with TS most of his life. He would violently throw his hand in the air to the point that it was hurting his joints. The therapist taught him to manipulate the tic into a hair smoothing jesture that was less obvious and less painful.

 

I don't know that it will work, and I don't expect miracles. I'm just looking for an alternative to the Chlonodine. I am first going to investigate the correct antibiotic. I am just conviced that he still has omething lingering in his body.

 

I have expressed to Kevin strongly how much I understand that he can't control it. That is why he feels sanctuary when he gets home. I told him it is a place where he can let it out after a long day at school. I still feel so guilty about all the times before when I suspected he could control the sniffing and throat clearing. I wish he would have told me that he couldn't help it back then. I don't think he really understood at that time either. I will let you know how things go. Thanks for the concern.

 

Thanks mommy11. It is nice to hear that. It is also nice to have a place where people understand what we are going through. I know it could be worse. The Clonodine is doing something. The ticcing is more frequent, but less violent. He has seemed in very good spirits though. The most common side effect I have come across from reading about Clonodine is depression. I am watching for that very closely. I will keep you all posted.