Up-Date

[judy1270]

Will I took my grandson back to the ped doctor yesterday, with a copy of,Sydenham's Chorea.

My Grandson has had all these symptoms, and the first day he was taken to the ER was the 2-4-08 The Doctor told us he thought it was Chorea that is why they sent him to Phoenix Children's Hospital for an EEG and a MRI. Witch none were done.

They sent me home and told me it is just a tic live with it.

Yesterday I went to the web-site MD Virtual University and found the pages on Sydenham's Chore.

This is the web-site www. mdvu.org.

I ask my ped doctor to put my grandson on Penicillin he said it could not hurt we will give it a try. He had his first dose last and he has had two today, And I am happy to say it seems to be working he is not twitching as bad and he can move his head to the right side now.

Right now he is cutting out pictures for a school lesson.

So far so good.

This is a very serous condition and I will need to have a lot of tests ran on him.

But for right now he is doing so much better.

He is taking 1 1/2 teaspoons of penicillin three times a day.

I will keep you up todate

Thank you so much you have help in wasys you don't know.

A kind word praying for us.

I will keep you all in my paryers God Bless all of you and God be with one and all.

[kkver]

This thing is kinda exploding now , more and more kids are getting it due to infections and doctors are not ready to accept it. If i was you i keep him on at least 10 to 15 days duration of antibiotics. But you are the best judge on this. I am glad he's getting better but i am getting little frustrated with doctors after seeing more and more posts like yours.

[P_Mom]

Judy,

Thanks for the update. Sooooo glad to hear your Grandson is doing better...stick with the antibiotics! It is so very unbelieveable that doctors are so closed minded and can't seem to accept the fact that a simple antibiotic can sometimes be the "cure" for some kids tics. I swear if I listened to my neurologist, pediatrition, etc., who know how my sons would be doing. They both said the usual.."just tics".. "they will probably go away." Well, they got pretty bad at one point, and I took matters into my own hands and got the antibiotics.. and, low and behold, they went away. How many kids are needlessly dealing with this when simple antibiotics would do the trick? IMO, EVERY kid who has sudden onset of tics/ocd, should try a course of antibiotics, no matter what, even with normal bloodwork, it can't hurt. There are so many silent viruses/illness out there, you just never know. I wonder if this can turn into the new kind of strep sequale epidemic, like rheumatic fever. One doctor said that he believes strep has found something new to do and attack, the brain. Before it was the heart, we basically took care of that, now he said he thinks strep is a very tricky bacteria and has morphed and found itself something new to do. Scary, huh?

[kim]

Judy,

 

So happy to hear things are settling down. WHEN is mainstream medical going to seriously look at the immune system in relationship to these disoders?!

 

You might find this of some interest too.

 

http://en.wikipedia.org/wiki/Torticollis

 

Torticollis, or wry neck, is a condition in which the head is tilted toward one side, and the chin is elevated and turned toward the opposite side.

and

 

Infections in the posterior pharynx can irritate the nerves supplying the neck muscles and cause torticollis, and these infections may be treated with antibiotics if they are not too severe, but could require surgical debridement in intractable cases.

[judy1270]

This thing is kinda exploding now , more and more kids are getting it due to infections and doctors are not ready to accept it. If i was you i keep him on at least 10 to 15 days duration of antibiotics. But you are the best judge on this. I am glad he's getting better but i am getting little frustrated with doctors after seeing more and more posts like yours.

Hi KKVER,

What worries me is how fast they want to say it is just a TIC and they have ADHD. My grandson could have borderline ADHD, but that is the least of my worries. I have taken him off the Topamax and today I will call the the Neurologist at Phoenix Children Hospital.

That man did not do one test not an EEG nor a MRI, I am so mad at all of them.

These are Children and we have to fight for them.

Don't give up and God Bless you and God keep your Children safe.

Judy

[P_Mom]

Judy,

Just to let you know... ADHD symptoms are common in PANDAS cases and also related to infection.

 

Kelly

[Caryn]

And chronic reoccurring infections and chronic 'flu-like symptoms' that seem to constantly morph and reappear are a sign of food intolerance/allergies. It all goes back to the gut.

Always be sure the kids are eating good and if possible test for allergens too.

[lurker]

Caryn,

 

I have been putting off IGg testing for weeks now because my little guy was steadily improving, then he had an exacerbation with a cold; so I didn't do it then. I think I'm making excuses because the blood draw for the strep titers was so stressful for him, I'm afraid another blood draw will set him back. He's doing so well now.

 

On the other hand feeding him is such a challenge -- my naturopath already took him off wheat and dairy. I added corn and nightshades, which makes it an anti-inflammatory diet. By the way, I feel like we've been eating at Caryn's house for the last month (thank you for the recipe blog.)

 

I know I have to do it because I am literally scared every time I feed the little man. Any suggestions for preparing a barely-five-year old for a blood draw and reducing his stress would be appreciated.

 

Sorry for venting. I'm feeling needy.

 

Tami

[Caryn]

Our ped had a fabulous rubbery device with little bristles on it. (kind of like a brush). He had me use that on Tigger's other arm and we talked about the needle feeling the same way. In the mean time, while we were conversing, the ped stuck the needle in his arm and he didn't notice.

When we did the IgG test (after this) I had Tigger count to 100 with me. Worked great because he loves being smart. He felt like a show-off to the nurse! When we had his full blood work up (seven vials in total) we did the same thing, and the nurses (there were three) could not believe they did not have to put him in a full nelson.

Act like it is no big deal, be nonchalant, distract him with cool conversation, and bribe him with an awesome reward afterwards (like my chocolate chip cookies). Things may get hairy and when they do just distract, distract, distract.

 

Thanks for the compliment on the recipes! BTW. Anyone is welcome to eat at our house! The more the merrier!

 

Also, if you are getting good results with the diet you may just want to forget about the IgG. For the test to be accurate the child should have regular (recent) exposure to the foods. You might end up with a test that isn't as accurate because the foods have already been removed and the antibodies have already begun to go down. Try it for three months and then do a challenge on one food. If you don't see a reaction, add that food back. Then do the same after six months. I know six months sounds like forever. (For us six months marked Chuckles birthday, so we kept shooting for that day as our goal and our 'turn around' date for going back to a normal diet.) Well, by the time Chuckles b-day rolled around I was sold. There was NO going back!

 

And, the test costs a whopping $349 for the cheap version. (our insurance only covered a small portion of that.) Okay if you really want to know, but not necessary if you can already do the diet with success.

[lurker]

Caryn,

 

Thanks. I will use distraction and bribery. I am doing the Great Plains IgG. I think it was around $220. I paid the Doctor for it weeks ago. Thanks for the advice about removed items not showing up on the test. I called the lab and discussed it. Apparently the antibodies circulate for quite a bit longer than they have been removed from his diet. At this point things may be only slightly less reactive, all the more reason to do it now.

 

I may have actually downplayed the part about being scared to feed him. Its bad. And one thing I have realized since this began is that "mommy stress" is a tic trigger. I'm doing it tomorrow.

 

 

Tami

[Chemar]

one thing I have realized since this began is that "mommy stress" is a tic trigger.

 

 

Tami

 

oh yesssss ..... mommy stress is tic trigger numero uno!!

 

Hoping you get some clear answers Tami and that all goes well for him during the testing. My son is 18yo and he still loathes having to have blood taken, even just a finger prick

[lurker]

Chemar,

 

This is how I learned about "mommy stress": I was crying to my Aunt on the phone about my scrupulous food diary where I recorded his diet, his stress levels, and his tics, and how I could not after months find a single correlation. She suggested that I chart HIS tics and MY stress. I am ashamed to admit a slight pattern emerged.

 

Today was his first completely tic-free day since the DTaP in late September, and now I have an appointment to traumatize him tomorrow. I'm not sure I'm strong enough. I am having horrible flashbacks to when he hid under the examining table in the ped's office to avoid the shot in the first place. I should have listened then!

 

Tami

[bcase]

Tami,

 

We just had my daughter's blood drawn for testing and I asked my Dr. to prescribe some EMLA cream. They called in a tube and then I went to CVS and bought the Tegaderm transparent dressing. You put the cream on about one hour before the blood draw in the spot they will draw from, and put the dressing over that. She watched the needle go in and never felt a thing.

 

Bcase

[Sunshine]

The cream consistently works wonders for my little guy. But, FYI... it does make the veins smaller and therefore harder to access. Last week my son watched the RN 'dig' around searching for the vein. Luckily he managed, but I found it hard to watch!

Sunshine

[judy1270]

Caryn,

 

I have been putting off IGg testing for weeks now because my little guy was steadily improving, then he had an exacerbation with a cold; so I didn't do it then. I think I'm making excuses because the blood draw for the strep titers was so stressful for him, I'm afraid another blood draw will set him back. He's doing so well now.

 

On the other hand feeding him is such a challenge -- my naturopath already took him off wheat and dairy. I added corn and nightshades, which makes it an anti-inflammatory diet. By the way, I feel like we've been eating at Caryn's house for the last month (thank you for the recipe blog.)

 

I know I have to do it because I am literally scared every time I feed the little man. Any suggestions for preparing a barely-five-year old for a blood draw and reducing his stress would be appreciated.

 

Sorry for venting. I'm feeling needy.

 

Tami

No need to say your sorry, My heart goes out to you and your little man. It is so hard for them to get there blood draw,goodness it is hard for me. just hold his little hand and.

God love ya both