To Chemar, momonamis, and Allison,Hi, it's Brett from last night

[brett]

Hi, thank you to Allison, momonamission, and Chemar for your helpful responses. My son left the hospital today after an 18 hour video monitoring EEG; the neurologist said his brain waves were totally normal with no evidence of seizures. He did see on the video the amazing amount of jerking and moving my son's body does though; the dr. called them "myoclonic jerks." I asked him why does he jerk in his sleep? As from what I have read tic disorders do not have tics/jerks during sleep. The dr. said that is not always the case and sometimes there can be movements in sleep. He would not commit to any diagnosis, and stated he felt the Tenex (an anti-hypertension medication) my son has been taking for a week and a half (which has helped a lot in calming down the out of control body movements and hyperactivity) was not working sufficiently and stated he wanted to put my son on 1mg. of Orap to see if that helps. He also recommended I put my son back on the antibiotics as his symptoms are so PANDA like. Of course that was what I thought, but his nurse told me last week to take him off the antibiotics as his blood test results were normal. I told that also to the dr., he said well, the blood test results are not always definitive. I just wish he and his nurse had discussed that last week before I lost a week of antibiotic treatment. So now my son is back on the amoxicillin and I will see how that goes.

My main concern right now is the ORAP the dr. wants to prescribe. I went online and researched it today, and I have to say it sounds horrible and very dangerous! It is an anti-psychotic (a neuroleptic) and I noticed that Chemar posted today about her son's experience on Haldol, I think they are the same class of drugs? Just reading about ORAP made my skin crawl and made me feel sick to my stomach! Why would a dr. prescribe this so quickly after only 1 week of Tenex/Amoxicillin without even giving that a chance? My son does have a lot of body twitching/spasms/jerking, but it has greatly improved with just one week of Tenex! I guess the fact that it is non-stop leads the dr. to believe that it is severe and needs further intervention? There is no way I can put my son on ORAP, it seems so risky and dangerous with possible permanent side effects like tardive dyskenisia, and from what I read it can make tics worse? I would rather my son live with the jerking than take the risk of making him worse? And these drugs just mask the symptoms anyway, they don't do anything for the underlying disorder, which at this point the dr. cannot commit to a diagnosis anyway, he says try the drugs for a month and let's see how he does, if he improves we'll take him off. So why just not keep him where he is and not put him on this anti-psychotic? Plus all the literature says do not give to children under 12! I just don't understand. Any feedback you can give me is so appreciated. Thank you. Brett

[Chemar]

Hi Brett

I dont have too long to post more now but just wanted to give my opinion on Orap..........personally I would stay as far away from it as you possibly can!!!!

 

Honestly, these docs sometimes drive me

They are so quick to just keep loading on med after med before they even know what is going on.

 

And then when med side effects begin, they keep adding more meds to hide the side effects, which in turn cause new side effects. And all the while these poor kids developing bodies are being poisoned!!!!

 

Brett, have you considered trying to also find an Integrative phsyician ( there is a helpful thread at the top of this forum on Finding Medical help)

At least that way you will be having some balance to all this and at least be guided in doing good natural things to build your son's system up and hopefully benefit him while seeking a clearer diagnosis.

 

i have to go, but really want to encourage you not to let yourself feel so overwhelmed that you allow strong brain drugs before you know what youre delaing with medications have their place, and I am thankful for them and for the lives they save etc etc..........but this is very different.

 

(((hugs))) to you and your son

[ad_ccl]

Hi Brett,

 

I am glad the results from his testing at the hospital were normal. I am also glad you are going back on the antibiotics - my opinion since you have asked - is to stick only with the antibiotics before adding any other drugs - if it is PANDAS - than they should help a lot - keep in mind though that amoxycillin does not seem to work for all kids - we at one point changed to Biaxin - my son is now on amoxycillin prophylactically to prevent any further strep infections. Remember the tics are a symptom - the "brain drugs" treat the symptom not the root cause. Had I gone the route of "brain drugs" then my son may not be ticcing - but the underlying problems would still be there - instead we got to the root cause and corrected it. I am so glad we went the route we did - these kids are young and their brains are still developing. I do however understand why people resort to the drugs - and don't judge them for doing so. We all have to do what we feel most comfortable with - and had my son not improved with the antibiotics - I would be the first to admit I would have put him on drugs because he was not functioning.

 

Marie - so glad your son is doing better - things are still improving here - he was at school all day - by evening he was making a wheezing sound. He said his throat was a little sore today. I too am looking forward to the holidays - we have so much to be thankful for. Last year was really difficult - my son got a terrible neck tic a few days before going to see Santa - and he soooo wanted to still go - so we did, and I held back tears as I watched him with Santa. This slight wheezing is really not a big deal in the grand scheme of things.

[Ronnas]

Hi Brett,

 

I never seem to have time to post anymore but I wanted to reply really quick as our experience was very similar to yours (4years ago)...my son is now 9 and doing very well. We also had many eeg's and tests done and did go the med route initially. If you are seeing improvement with the Tenex then I would continue with this and as far as I know it may take up to a month to see improvment...a week is not long enough to determine whether it will help or not.

 

ORAP...yikes everyone knows we had a terrible experience with this med...I am sure it must help someone or else why would it ever be prescribed but personally I thought this med was horrible (my son was on it for about 8 months). Once we started looking at underlying causes such as food sensitivities and vitamin deficiences etc. was when my son started to make significant progress.

 

My son is also a PANDAS kid...he has never responded to amoxicillin. It is a long story but his initial antibiotic was Keflex which was like a miracle to us. Within 2 days my son was a completely different kid...no tics, behavior stabalized etc. We have also used climdamycin.

 

As a side...my son did tic during his sleep...obviously not as much as during the day but it was for sure there and we video taped him and his sleep was very restless with some tics and restless legs.

 

I do have to go but let me know if you have any questions. Do a search here at lattitudes and at braintalk on the TS board or the PANDAS board and you will see some of the information I have posted.

 

Ronna

[Andy]

Brett We were told that our son was looking at special education or home school for his future when he was 4 and were pushed towards meds. To make a long story short, he is now in a gifted program in his neighborhood school and has art work being exhibited in a showing after winning a county wide contest.

Yes I am bragging but could I have been able to brag if I listened to those doctors. I think not. If nothing else works then go to the meds is my feeling but there is so many alternative treatments out there.

For my son it was a long road starting at 2 years of age but after many ups and downs we feel that we made the right decision for even if we are not out of the woods yet, he is enjoying his life and that is what it is all about.

 

By the way, my boy was also tested for siezures and for a tumor. Negative.

However, he did test for heavy metal poisoning, extremely low gulthione levels, delayed food allergies, and yeast and fungus overgrowth. All could have been the result of mercury in vaccination shots.

[mommaonamission]

Hi Brett. I'm so glad to hear that your son is out of the hospital. What a relief. We haven't tried any of the "drugs" yet, for that exact reason. They just cover the tics. If my son came home humiliated from school of embaressment, I might consider it. But he is dealing with it, and so are we and his classmates. We haven't even seen his Neuro yet since we couldn't get in until Dec 8th, but while trying to make an appointment, the doc prescribed a very heavy drug that has not been on the market long. He did this without even seeing my son! Yes, it is discouraging.

 

My praying and supplementing has started to pay off for my son. I will post a thread with an update. I think it is due to the Carnosine I have been giving him. You might consult with a nutritionist to see if this would be okay for your little one. In the mean time, take care, and I wish your son the best.