Penicillin

[judy1270]

Well I was hoping the Penicillin would kick the tic. And it is helping he is not jerking out of his skin. But he is still jerking his head to the right and it gets real bad if he is upset so we try to stay calm,witch is not easy for any of us.

I have been bathing him empson salt and that dose work to relex him. He has a hard time going to sleep he is awake till midnight I just can't get him to sleep.

We see his ped doc on Friday that should prove to be interesting.

His Doctor thinks my grandson has a tic and I do not think it is a tic so we are in a dule over his care right now and you know how doctors are they think they are gods.

I am so mad at the hole thing they refuse to give him an EEG. Why would they do that?

They put him on Topamax and said go home I had to fight his ped doc to put him on penicillin.

All the Topamax did was stiffen his neck and his right arm he could not turn his head to talk to me.

We stated the Penicillin on the 19th and it worked he can move his head to the right and left he can write his name now and he is coloring in his coloring books now.

I took him off the Topamax on the 20th.

So he is taking 1 1/2 tips 3 times a day

I give him a B6 and MSM in the morning and he gets his Empson bath and he is doing much better.

He has bad days and good days,

Today is a good day.

You know what makes me so mad at this thing that has come to rob our kids of health and joy.

Is we can put a man on the moon and we set behind this computer and talk write and find any thing we want.

It is 2008 and we can't fix a tic.......................!

How can this be with all we can do we can't find something to help our most precious gift on earth.

They came up with a drug for men so they can have sex.

They came up with a drug to make us look younger (just a small shot) in the four head no more lines.

They can clone a cat in China.

BUT THEY CAN'T FIX A TIC.

I want to hit my grandsons doctor so bad.

I hope I have not upset any one, I just needed to vent or cry and crying is not going help my little baby.

[Caryn]

Judy,

I can relate to your frustration. Keep fighting for your grandson. If there is one thing I learned last year it is that I alone had the wherewithal to help my son because I made it my business to get answers, even when the doctors couldn't provide them, just like you are doing now. I am so happy that he is getting better.

 

Can I ask what you have done diet-wise to help in his recovery? Most members here report that avoiding all the artificial stuff is important. I totally agree. Judy, maybe you could look into foods, too, as a next step.

Have you read Michael Pollan's new book: In Defense of Food: and Eater's Manifesto......?

I was really inspired by it. He gives a lot of advice on how to avoid the pitfalls of the western diet.... a diet so rich in what he calls "food-like substances" rather than real whole foods, that it is costing us billions in health care. Michael humorously tells us that we need to avoid any ingredients our great grandmothers' wouldn't recognize as food. This is a tough time of year to eat good fresh organic foods, as it costs a fortune when it is not in season, but you can simply start to avoid some of the main tic triggers: food colorings, sodium benzoate, and all ingredients that are really a form of MSG (monosodium glutamate). http://www.truthinlabeling.org/hiddensources.html, and preservatives in general (even citric acid could be a problem for him-- be sure to get fresh squeezed orange juice, avoid the ones in the boxes or single serving bags-- the fresh stuff is so much healthier.) Get him to drink more water, too, if he isn't a very big water drinker. This could also help him eliminate toxins faster.

I think most moms here will agree that when they go back to organic, all natural foods (that God intended us to eat) their kids do better. It is frustrating, I know. Aside from avoiding known allergies (which would be your last step), this is a great way to lesson the severity of the tics.

I am glad he is also responding to the vits. That is good. keep us updated!

Caryn

[faith]

Judy,

Just to be clear, is the penecilin course over? So you feel his neck movement is the same?

 

Judy, is there any reason you can't just find a ped. neurologist and start over with another doctor? Having at least the EEG is pretty standard in the neuro office, even if he is having tics, they have to rule out all else.

 

Faith

 

P.S. you are so right in all you said, I had to chuckle, I guess there is much more $$$ to be made for those "other" problems of the world.

[judy1270]

Judy,

I can relate to your frustration. Keep fighting for your grandson. If there is one thing I learned last year it is that I alone had the wherewithal to help my son because I made it my business to get answers, even when the doctors couldn't provide them, just like you are doing now. I am so happy that he is getting better.

 

Can I ask what you have done diet-wise to help in his recovery? Most members here report that avoiding all the artificial stuff is important. I totally agree. Judy, maybe you could look into foods, too, as a next step.

Have you read Michael Pollan's new book: In Defense of Food: and Eater's Manifesto......?

I was really inspired by it. He gives a lot of advice on how to avoid the pitfalls of the western diet.... a diet so rich in what he calls "food-like substances" rather than real whole foods, that it is costing us billions in health care. Michael humorously tells us that we need to avoid any ingredients our great grandmothers' wouldn't recognize as food. This is a tough time of year to eat good fresh organic foods, as it costs a fortune when it is not in season, but you can simply start to avoid some of the main tic triggers: food colorings, sodium benzoate, and all ingredients that are really a form of MSG (monosodium glutamate). http://www.truthinlabeling.org/hiddensources.html, and preservatives in general (even citric acid could be a problem for him-- be sure to get fresh squeezed orange juice, avoid the ones in the boxes or single serving bags-- the fresh stuff is so much healthier.) Get him to drink more water, too, if he isn't a very big water drinker. This could also help him eliminate toxins faster.

I think most moms here will agree that when they go back to organic, all natural foods (that God intended us to eat) their kids do better. It is frustrating, I know. Aside from avoiding known allergies (which would be your last step), this is a great way to lesson the severity of the tics.

I am glad he is also responding to the vets. That is good. keep us updated!

Caryn

Hi Caryn

I hope I am replying correctly. I have changed his hole diet and he is drinking a lot of water and no sugar or any prossed food. I am going to try Calm kid I see a lot of moms are useing it.

[judy1270]

Judy,

Just to be clear, is the penicillin course over? So you feel his neck movement is the same?

 

Judy, is there any reason you can't just find a ped. neurologist and start over with another doctor? Having at least the EEG is pretty standard in the neuro office, even if he is having tics, they have to rule out all else.

 

Faith

 

P.S. you are so right in all you said, I had to chuckle, I guess there is much more $$$ to be made for those "other" problems of the world.

Hi Faith, I will see his ped doc on Friday and I will tell him I want a to see a neurologist in Bullhead City. If I can't find one in Bullhead I will take him to Vegas I know they must have ped neurologist there. It makes me crazy that they did not do an EGG at Phoenix Children's Hospital. Dr Deering looked at him and said it was a tic take him home and then put him on Topmax.

I should have pulled him out of there and took back to Calif.

He stop's the penicillin on Friday and that scars me to death.

[Calicat]

Hi Judy,

I'm glad you are having some success, and I know more will come with time. I think that is the standard ingredient... TIME. Time to try new things, time to let those things really work in the body, time to notice patterns and act on them...

 

Just curious, maybe I missed something you said in an older post, but why is it that you think it's not a tic?

 

Calicat

[kkver]

Judy

After reading your post it seems your grandson will need stronger antibiotic then penn. Next in line are azithromycin and omnicef . Some one here posted his/her kid gets better with only omnicef but most PANDAS cases gets ok with azithromycin. There are posts here where kids were on penn or amox which stopped working then azithromycin or omnicef work.

Second you will have to find a doctor who understand the situation and is willing to work with you which it self is kind of project which i went through.

[michele]

Judy, My fisrt thought was the pen isn't strong enough. I wonder if you doubled the amount if it would make a diiference? We gave pen vk for awhile but it wasn't potent enough. We now give omnisef and it is great. My son is so much better on it.

 

First, document every detail while it is fresh in your mind. You will have to relay all this to another doctor who will hopefully be more open minded. Second, find another Dr. Try a neurologist or even better an immunologist/neurologist group. If they work together you will find better success. Most neurologist won't accept PANDAS but most immunologist will treat PANDAS with antibiotics. The neurologist will run the EEG though. Don't give too many supplements at once. You will get confused plus they can cause different reactions. Stick to one at a time. Research Dr's. Try here or other websites. Ask people online in your area who they use for tic disorders?

 

You are an awesome grandma. Are you raising your grandson. Wow! I wish my family would get involved and understand this disorder to the level you are researching. God bless you and your grandson. He is very lucky to have you.

 

Michele

 

Judy

After reading your post it seems your grandson will need stronger antibiotic then penn. Next in line are azithromycin and omnicef . Some one here posted his/her kid gets better with only omnicef but most PANDAS cases gets ok with azithromycin. There are posts here where kids were on penn or amox which stopped working then azithromycin or omnicef work.

Second you will have to find a doctor who understand the situation and is willing to work with you which it self is kind of project which i went through.

[judy1270]

Hi Judy,

I'm glad you are having some success, and I know more will come with time. I think that is the standard ingredient... TIME. Time to try new things, time to let those things really work in the body, time to notice patterns and act on them...

 

Just curious, maybe I missed something you said in an older post, but why is it that you think it's not a tic?

 

Calicat

Hi in response to your question why I think it is not a tic.

 

A Tic is 80% genetic and there is no history in our family's to support that.

And he has other medical problems that would would manifest as a tic but not be a tic.

The doctors are not looking at the other problems they act like it would be to much trouble to do the test to find out what is really going on.

1, Lupus, his blood test taken back in 1-2-07 and 11-4-07 show the ANA screen as positive.

2,Sydenham's Chorea, he has all the markers for Chorea.

Both of these have have the symptom of jerking and movement disorder.

The big factor is the penicillin has slowed the jerking.( And penicllin would have no efect on a tic.)

[Chemar]

Hi Judy

 

penicillin WOULD reduce a tic *if* the tic was being caused by a microbe such as strep (not just strep throat)

 

THAT is what PANDAS is......Pediatric Autoimmune Neurological Disorders Associated with Streptococcus

 

one of the clearest indications that a tic is being induced by a microbe is the improvement with an antibiotic

 

and 80% of tics are sure *not* genetic...not sure who told you that but the people on just this forum alone can attest to that. A high % of TOURETTE tics are genetic, but a large number of kids are diagnosed with Tourette when in fact their tics are being caused by other factors, which we discuss in detail on this forum, and where a large % are linked to nutritional deficiencies and allergies and GIT problems, and many to PANDAS

 

where penicillin can help in PANDAS, there seems to be a better response with zithromax (azithromycin)

 

 

 

 

Hi in response to your question why I think it is not a tic.

 

A Tic is 80% genetic and there is no history in our family's to support that.

And he has other medical problems that would would manifest as a tic but not be a tic.

The doctors are not looking at the other problems they act like it would be to much trouble to do the test to find out what is really going on.

1, Lupus, his blood test taken back in 1-2-07 and 11-4-07 show the ANA screen as positive.

2,Sydenham's Chorea, he has all the markers for Chorea.

Both of these have have the symptom of jerking and movement disorder.

The big factor is the penicillin has slowed the jerking.( And penicllin would have no efect on a tic.)

[P_Mom]

Yes, Judy, please, please look into things more. I agree with Chemar and it seems someone may be misleading you and I can bet it may be the docotrs, because, I know of many Doctors who would say the antibiotics will NOT help the tic. Tics with 80% genetics, well, I do not think that is the case...there are MANY, MANY people that have kids with tic disorders who have no family history of tics...sure, there may be a genetic predispositon there that may never have manifest itself in anyone else in the family before. Actually, people can carry the TS genetics, whatever that may be, and show absolutely No symptoms. Also, many times the TS genetics will only manifest itself as OCD traits, common in girls, or be so extremely mild, many people can have it and never get diagnosed or show obvious symptoms, then only to find out what is going on when a child develops the disorder to a higher degree. Sydenhams Chorea is a by product of Rheumatic Fever, which is a by product of strep. If your child has chorea, then he would of had rheumatic fever first..did he? By the way, rheumatic fever is now uncommon because of the use of antibiotics to treat strep. Also, and this I can attest to with the UTMOST certainty, tics can ABSOLUTELY, 100% be diminished and/or even eradicated with the use of antibiotics.(if caused by an infectious origin) I have seen this with my own two eyes and you don't get better evidence than that..I hope you will take the word of the people on this board...we would never mislead you. Antibiotics took my sons tics from high to basically nothing in one day.. this happened twice with him and he is now on preventative antibiotic and is tic/symptom free. When people deal with tics, you know what they are, just ask us parents of kids with tics, we know what we know! I am fairly sure a Doctor can also identify a tic easily when he sees it, unfortunately, where they fall short is treating the tics. I am sure with time you will be able to see all this too, just keep your mind and options open, and like I said, we here on this forum always do our best to help.

 

Kelly

[Caryn]

Gluten Lady here again. I just want to mention that in a quick google search I found scientific journal articles connecting (loosely) the simultaneous presentations of celiac disease and lupus. Lupus, or any autoimmune disorder, is quite often a sign that a genetic screening for gluten intolerance and a biopsy for celiac disease should be considered. Celiac and autoimmune disorders go hand and hand on most celiac forums I visit.

 

http://www.springerlink.com/content/12216h11401747l7/ "Celiac disease in a patient with systemic lupus erythematosus: a case report and review of literature"Abstract Celiac disease (CD) is an inflammatory condition of the gut with a known autoimmune pathogenesis. Many similarities exist between the pathogenesis of CD and systemic lupus erythematosus (SLE); it is still unknown whether there is an association. There are 13 case reports in the literature of both diseases occurring simultaneously. We report another patient who was diagnosed with SLE and 8 years later, developed CD. A review of the literature is also presented.

 

http://www.sciencedirect.com/science?_ob=A...f6b4446da846569

"Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease"

Abstract Background & Aims: The relationship between celiac disease and many autoimmune disorders has been explained by the sharing of a common genetic factor. In a multicenter national study, we examined the relationship between the prevalence of autoimmune disorders in celiac disease and the duration of exposure to gluten.

 

Here is a PDF that explains the many autoimmune disorders connected to gluten (Lupus is on this list):

http://www.gluten.net/downloads/print/Asso...neflat12-06.pdf

 

I understand the need to check for PANDAS, but I also think that it is vitally important to screen for gluten intolerance/celiac disease in cases where an autoimmune disorder is already present and the parent sees the onset of tics. Could this be a leaky gut issue? Candida overgrowth affecting the brain? Don't antibiotics also kill candida (and everything else)?

 

I will cross post this in the Role Wheat Plays.... thread as well for anyone who is following that thread linking research, etc.... I hope you don't mind, Chemar. Delete this one if you want to.

Caryn

[Chemar]

Hi Caryn

that link is fine here

the more we can network and co-ordinate here, the more people find clues and the more kids are helped.

[judy1270]

Yes, Judy, please, please look into things more. I agree with Chemar and it seems someone may be misleading you and I can bet it may be the docotrs, because, I know of many Doctors who would say the antibiotics will NOT help the tic. Tics with 80% genetics, well, I do not think that is the case...there are MANY, MANY people that have kids with tic disorders who have no family history of tics...sure, there may be a genetic predispositon there that may never have manifest itself in anyone else in the family before. Actually, people can carry the TS genetics, whatever that may be, and show absolutely No symptoms. Also, many times the TS genetics will only manifest itself as OCD traits, common in girls, or be so extremely mild, many people can have it and never get diagnosed or show obvious symptoms, then only to find out what is going on when a child develops the disorder to a higher degree. Sydenhams Chorea is a by product of Rheumatic Fever, which is a by product of strep. If your child has chorea, then he would of had rheumatic fever first..did he? By the way, rheumatic fever is now uncommon because of the use of antibiotics to treat strep. Also, and this I can attest to with the UTMOST certainty, tics can ABSOLUTELY, 100% be diminished and/or even eradicated with the use of antibiotics.(if caused by an infectious origin) I have seen this with my own two eyes and you don't get better evidence than that..I hope you will take the word of the people on this board...we would never mislead you. Antibiotics took my sons tics from high to basically nothing in one day.. this happened twice with him and he is now on preventative antibiotic and is tic/symptom free. When people deal with tics, you know what they are, just ask us parents of kids with tics, we know what we know! I am fairly sure a Doctor can also identify a tic easily when he sees it, unfortunately, where they fall short is treating the tics. I am sure with time you will be able to see all this too, just keep your mind and options open, and like I said, we here on this forum always do our best to help.

 

Kelly

Kelly.

I know you are right all the things I have found on this board have help me more then my doctor has.

The Peniclln is working he has a small tic as of this morning he has been on the peniclln for 10 days now.

The tic is only in the right side of his neck and it only hits a few times. It is so hard there is so much info out there some bad and most of it comes from my doctor.

Thank you Kelly

[trubiano]

If you are able to, keep giving the penicillin. It took about 6 weeks before my son stopped ticcing completely. I kept telling them they needed to give him something stronger because it didn't seem like it was working, but it did and still does. I pray it will help you too. I was very scared and frustrated in the beginning. Every doctor just kept pushing medications on us because they had no clue what to do. Finding this site was a Godsend. We are all here for you.