Update on Pandas son

[Mike]

Hi everyone. I thought I would drop in and give an update on our almost 11 year old son who started a pretty severe head shaking tic last March. When he tested positive for strep we chalked it up to PANDAS. A little over 3 months later he is practically back to normal. We might see a tic once or twice a week maximum (usually not at all). He still will sniff while settling down for sleep in his bed, but the tics are so low now that there are no social issues that we so greatly feared. He is not on any supplements or medication. We tried Tenex and it didn't do much for him so we took him off. I think his body just needed the time to recover from the strep infection. Thanks for all of the help. Hopefully the worst is behind us.

 

Mike

[Chemar]

that is very good news Mike...thanks for the update

 

just for the record, was your child treated with any antibiotics for the strep?

[hermom33]

Hi everyone. I thought I would drop in and give an update on our almost 11 year old son who started a pretty severe head shaking tic last March. When he tested positive for strep we chalked it up to PANDAS. A little over 3 months later he is practically back to normal. We might see a tic once or twice a week maximum (usually not at all). He still will sniff while settling down for sleep in his bed, but the tics are so low now that there are no social issues that we so greatly feared. He is not on any supplements or medication. We tried Tenex and it didn't do much for him so we took him off. I think his body just needed the time to recover from the strep infection. Thanks for all of the help. Hopefully the worst is behind us.

 

Mike

 

Mike,

 

I am happy for you and your son. That is wonderful. Did they put him on antbiotics? Is it just that in time they got better for him? My daughter came down with strep last month and she is still having really bad eye rolling tics. I am having a hard time dealing with it (she doesnt see this in me though) . She is going to a neurologists next week.

Not sure what they are gonna do or say.....

[faith]

So glad to hear things are settling for your son Mike, and thanks for the update. Do you feel anything besides the antibiotics were beneficial for him, and are you doing anything to keep up his immune system?

 

hermom, just wondering, not clear if your daughter was given antibiotics for the strep? if so, did any tic symptoms diminish? What else are you trying for her? The neurologist may just give you the basics, please don't be discouraged any further if you do not get anything useful there. Are you trying any supplements or diet restrictions?

 

Thanks

Faith

[hermom33]

Hi Faith,

 

She was giving antibiotics when she was sick but that is the same week they got worst and once we finished the treatment her tics still stayed the same. The only thing I am doing is the naturals calm once a day. She mostly only drinks water, always has and eats rather on the healty side. It has been only a good few days but still nothing yet with the MAG.

I bought some epson salt today and am going to try that?

See, thing is when I took her to the urgent care they did the quick strep test ONLY and it didn't show up but he still treated her as if she had it because she had all the symptoms. She had high fever, spots on throat, vomiting, extremely sore throat, couldn't swallow nor eat and she had body aches.

 

In the past 3 years (that is how long it has been since this started) whenever she had a antibiotic for ear infection, rash, it had always helped with her tics.

When she had the OUT OF THE BLUE first episode of tics it was shortly after she had scarlet fever. I know it is pandas related...Her Doc doesn't know much about pandas so basically he thinks I am crazy. I get "that look" from him. This is her Pedi she has had since an infant.

 

He did give us the referral for the neurologist at least, that was after I said about when she watches TV they are really bad. She can't sit still at times and and her eyes constantly go up. She only watched maybe 30 mins of TV now and the computer is limited too. She takes Karate and that keeps her occupied a few evenings of the week so we are always on the go.

 

Our insurance we need to have a referral in order to see someone else. I want her to be testing for all the allergy's and heavy metals but I dont know that he will let us. I also want to test is she has any strep in her antibodies.

 

What else can I do? All I do at night is read these boards till midnight at times and cry. It is breaking me!!!

[faith]

hermom,

what you are doing is very good, yes it is painful, but you are on the right path and know it will get easier. The reading is exhausting, but necessary to understand and absorb all the possibilities. It will get easier once you find something that resonates with your child, in other words "what ails him".

 

Yes, it must be hard with the referral thing, but if you could convince a doctor to get you to see an infectious disease doctor or an allergist who is also a DAN doctor, they could give those tests (the strep titers) and think they would be covered. I did it through both and it was covered, (but I can go to any doctor, don't need the referral). Maybe you could convince the doctor that he is having some symptoms of allergies and ask to see an allergist (who is an environmental or DAN doctor?). If you live in a small city, it will be hard to locate, but if near any big cities, that is where to look. If worst comes to worst, and push to shove, maybe you could just pay out of pocket for the viist. I know its hard, but we do this with our natural doctor, none of it is covered. But when I was at my lowest, I didn't care how much I spent, we had to do something. So maybe you could justify any costs by thinking how well worth it it will be if they could find some answers for you. Keep looking and have faith, I know God will lead you to the right place. Many if not all of us here have walked the same path.....

 

God Bless

Faith

[mblack]

hermom,

what you are doing is very good, yes it is painful, but you are on the right path and know it will get easier. The reading is exhausting, but necessary to understand and absorb all the possibilities. It will get easier once you find something that resonates with your child, in other words "what ails him".

 

Yes, it must be hard with the referral thing, but if you could convince a doctor to get you to see an infectious disease doctor or an allergist who is also a DAN doctor, they could give those tests (the strep titers) and think they would be covered. I did it through both and it was covered, (but I can go to any doctor, don't need the referral). Maybe you could convince the doctor that he is having some symptoms of allergies and ask to see an allergist (who is an environmental or DAN doctor?). If you live in a small city, it will be hard to locate, but if near any big cities, that is where to look. If worst comes to worst, and push to shove, maybe you could just pay out of pocket for the viist. I know its hard, but we do this with our natural doctor, none of it is covered. But when I was at my lowest, I didn't care how much I spent, we had to do something. So maybe you could justify any costs by thinking how well worth it it will be if they could find some answers for you. Keep looking and have faith, I know God will lead you to the right place. Many if not all of us here have walked the same path.....

 

God Bless

Faith

 

Hi Faith, could you tell me what a DAN doctor is? Is that different from a environmental doctor that was referred by aaem.com? We are seeing a doctor that I found through aaem and we have a visit next Tuesday. My son is not any better with the allergy shots and alot of things are pointing to heavy metals, some type of dificiency or something, he has RLS real bad at night, what test do I ask for?

[Cum Passus]

Mike

 

That is wonderful news. Thanks so mush for letting us know, sometimes we really need to hear some good news. Gives us hope.

 

God Bless,

C.P.

[Mike]

Hi everyone. I thought I would drop in and give an update on our almost 11 year old son who started a pretty severe head shaking tic last March. When he tested positive for strep we chalked it up to PANDAS. A little over 3 months later he is practically back to normal. We might see a tic once or twice a week maximum (usually not at all). He still will sniff while settling down for sleep in his bed, but the tics are so low now that there are no social issues that we so greatly feared. He is not on any supplements or medication. We tried Tenex and it didn't do much for him so we took him off. I think his body just needed the time to recover from the strep infection. Thanks for all of the help. Hopefully the worst is behind us.

 

Mike

 

Mike,

 

I am happy for you and your son. That is wonderful. Did they put him on antbiotics? Is it just that in time they got better for him? My daughter came down with strep last month and she is still having really bad eye rolling tics. I am having a hard time dealing with it (she doesnt see this in me though) . She is going to a neurologists next week.

Not sure what they are gonna do or say.....

 

Yes, once the tics began and I did some reading on Pandas, I had him checked for strep. When he was positive the Dr. gave him Keflex since our son has had mild reactions (rash) to penecilin. After about a week on these boards I heard good things about Zithromax so we switched him. Looking back I think his body needed time to heal after the initial strep attack. The anti-biotics didn't end the tics right away, but obviously helped get rid of the step. We had been giving him Omega 3 and a daily vitamin, but got more casual about it as time went on. We gave all the kids vitamins in the morning at the same time so he wouldn't feel singled out. All the kids thought Omega pills were "cool" since they were clear and the word "Omega" sounded cool to them (I would often say, "who wants Omega power today!?"). I got a black marker and crossd off "Fish Oil" on the bottle. If they knew what it really was they would probably never take them! If I ever saw an resurge of tics I would give him one 500 mg of Keflex (I had a few left over from the fist prescription I stopped short on). That only happened maybe 2 - 3 times. I can't say if it was needed, but I wanted to be sure I was doing what I could. It has been 5 months now since the sudden onset of tics and the only thing that really remains is the sniffing at night when he is trying to sleep. We will give him melatonin occasionally to help him fall asleep when he claims he isn't tired enough.

 

Almost forgot, we did take him back a couple of times to be sure the strep was gone and also check titer count. As expected the titer count gradually decreased each time we had him checked. In my opinion it was just making sure the problem was being addressed (strep) and giving his body time to recover.

[faith]

Hi mblack,

The DAN stands for (Defeat Autism Now) -- it is a doctor that has gone on to explore and find the reasons for autism, and many of these type tests and treatments, like supplementing, elimination diets, allergy and metals testing seems to be the same type things that may be beneficial for TS, as it is believed to be on the same spectrum. The environmental doctor is fine, I'm glad you were able to find one, I believe they do the same type things, and are probably allergists who specialize in environmental allergies (our DAN doctor is an allergest and I did find him from that aaem list too, I believe.) That is good, he should be able to do all the testing necessary. Just wondering how they bill for that, if it is covered by insurance. The allergy testing we had was covered, but we did the metals testing through our naturopathic doctor and it was out of pocket, it was a urine test that is done with at home collection after taking DMSA, a med which is supposed to draw out the metals and then they test the urine. Have you had any bloodwork done by that doctor? That could be useful too. You could also ask if they do a food sensitivity test, but I believe that will be an out of pocket cost. As far as deficiency testing, we have not had that, but others here have, so if you need that, someone could tell you those names, not sure myself. How did you like this doctor so far? Did he give an idea of what type of things he believed might help or uncover something?

 

Faith

[patty]

Faith,

 

Did the urine test your son take to test for metal cause increase tic(s)? If so, how long did the tics last before it settle?

 

We were advised to take that test thru our ND, but decided to opt out. And looking back, i am glad i did because my son had one silver filling and she didn't even ask about it. Anyway the filling fell out, i believe it was God's will and now i am thinking about taking the urine test.

 

Your input is appreciated.

 

Patty

[faith]

Hi Patty,

Interesting about the filling. Yes, she should have asked about that, I remember ours did.

 

I don't believe it caused any increase, I was worried about that too, and did my homework (about the DMSA) before we did the challenge (the naturo thought some actually felt better after the challenge test). If you do wind up doing that, has she started mineralizing him? We still take an aray of minerals because I believe that draws out minerals along with the metals, so that may be important.

 

How is your son doing presently? If all is well, I can see not rocking the boat. What treatment will the naturo use after the challenge? We don't use the DMSA to pull the metals (he showed lead and mercury coming out more than the others). We use a natural product called Metal-Free (not cheap!) She opted for a slow, gentle pull for him. Interestingly, when I updated our DAN doctor on what we were doing with our naturo, his opinion of the Metal-Free was that it did not work. However, I feel its best for us, I don't want to use the DMSA on him--if he was autistic, maybe more intervention would be needed, but with his level of tics, I'm comfortable with it. Although I feel the other things we have done have been more instrumental for him, mainly the dietary interventions.

 

Faith

[patty]

Faith,

 

I found another ND, who uses craniosacral therapy as part of the treatment plan for tics. Our chiropractor also use CST as part of his treatment plan. I believe my son would benefit from CST becasue it is noninvasive and it would help with some of his sensory issues.

 

My son's tics have been very mild & infrequent for about 4 mos., then about 1 month ago, he started complaining about a pain in his neck that causes him to do a new head tic. The pain seems to be under control, but his neck still feels stiff and his tics are more frequent, especially when he is watching TV. So he is back on Kids Calm, epsom baths & magnesium cream.

 

I am not sure if it has to do with our NAET treatments over the summer. I do feel that it is important to finish treating his food sensitivies & environmental allergies.

 

I totally understand you when you say you don't want to rock the boat. My son seems to react to everything, so i want to use the most noninvasive & gentle treatment as possible.

 

I agree about using DMSA, unless your child is autistic. I would look for other gentler way of metal detox. Our body detox naturally if it is working properly. Our children are young & their immune system have not fully developed. I believe that the body has the power to heal itself when given the proper nutrients and time. I think that's why some people with tics or ts are symptom free after their teenage years. Besides, some alternative practitioners i spoke with believe that a strong detox can cause other problems for some.

 

Faith, i want to ask your opinion on my son's new tic. It is a neck stretch forward then the head turns from left to right once or twice as if he is stretching his neck. The motion is slow & not fast like what i have seen in the past. I am wondering if it is a tic or something else.

 

BTW, i know you said your son is doing pretty well. What are some of his symptoms? How long has your son been ticcing? And do you see wax & wane cycles?

 

Thx!

 

Patty

[Chemar]

it may be a good idea to start a new thread for other issues so that we dont take Mike's thread on PANDAS off into another area. that makes it easier for those doing research here to stay on track

 

thanks

[faith]

Welllll!

sorry,

yes, we are not really discussing PANDAS now....we'll continue in another corner of the room.

 

but its so good to keep opening up talk, you never know when it might give a clue or answer to someone.

Faith