Help Please

[judy1270]

Hi am new to this form, I found it by accident I have been on this computer for 2 weeks looking up all I can find on this neurologic tic.

I am going to tell you what happen and hopfuly someone can give me some answers, because the doctors here in

Kingman Arizona can't.

My grandson was fine on the 2-3-08 on the 2-4-08 we took him to the ER for neck pain and a low-grade fever.

The Doctor looked at him and said he had a tic. I was floored how can you make that diagnoses with out one test done. He made it clear to me he was the dr. and I should shut up. They gave him a z-pack and sent us home.

My grandson seemed to be ok but the pain in his neck was still there and he was twitching and holding his head to the right side.We took him in to see his pediatric dr. they said he had no fever and was not twitching at the time. So they gave him his booster shot for chickenpox and home we went.

That night he ran fever of 104.8 I called the ER and they said put him in temp bath and give him Tylenol and Motrin till the fever brakes.

The fever came down to 102 we took him back to ER and he was twitching and moving around like a little top he could not control his movements.They send us to Phoenix Children's Hospital. The Neurologist said he had Tic and put him on Topamax 25mg.

I know in my heart they are missing something they have not done a EEG they say he dose not need one. I am going out of my mind If any one can help please post.

Thank you all and God Bless our Kids

[Caryn]

Judy,

I am so sorry to hear your story and I hope I can offer you a small bit of hope through my experience. We too saw our first tics after our ds age 3 1/2 at the time received his vaccinations (varicella and hepatitis .

I am not sure which chicken pox vax your grandson got, but some, maybe all, have animal byproducts such as pig gelatin in them that may be an allergy of sorts. Also, some claim that certain vaccines may help promote the spread of candida overgrowth in the body, as do over use of antibiotics. (I am assuming the z pack is an antibiotic?)

Some parents on this forum believe that an outbreak of tics combined with a fever could indicate PANDAS diagnosis or PITANDS-- which means that the child is exposed to strep throat or other virus and their body produces an excess amount of antibodies. Someone else could tell you more on this. Many of these parents treat their kids with antibiotics, saying that the antibiotics will diminish the tics.

In our case we discovered that our son was gluten intolerant and allergic to corn. (Originally he had over 17 allergies in an IgG allergy/intolerance blood test we did.) We also treated him for candida with a special low sugar, organic diet that eliminated wheat, corn, was soy reduced, and dairy reduced, and only used honey, maple syrup or regular plain old fruit for sweetening. We did do probiotics and heavy vitamin treatments for a while but after a year on a special diet he is free from tics and recovering quite well. We now are organic, low sugar, dairy reduced (except Kefir and natural yogurts, butter), and still gluten and corn free.

I hope more people answer you as the day goes on. These kids have various reasons for tics and various treatments that work. You have to play detective to figure it out. The gist of it is that his little system has had a toxic overload and needs to be cleansed for him to get healing.

I have a blog that highlights what we have learned, foods we eat, and recipes for dishes I make. Feel free to peruse it if you'd like. Check back here too, as I am sure other experienced parents will be weighing in with good advice.

Hope this helps.

Caryn

http://healthy-family.org

[P_Mom]

Judy,

I got chills when I read your post and my heart goes out to you. When all us Moms read posts, we all see different things in them. Of course, we all naturally go toward our own experiences, and then try to relay help. We all have such dramatically different experiences with what works for our children, I'll just let you know what I saw when I read your post.

 

Okay, the fact that this came on suddenly with fever (indicator of illness/infection of some sort) leads me down the PANDAS/PITANDS avenue. I think it is easy for a doctor to make a diagnosis of a tic when he sees it, there really are no tests to determine tics, you just observe them. The confusion comes when it comes down to whether it is transient, chronis, or TS. And then, what is the cause? Time answers those questions..

 

Anyway, your Grandson started the Zpack and seemed pretty much okay, then was fine at the pediatrtition, so they gave him the Varicella (chicken pox) vaccine. I believe the shot was what made him worse. This is not meant to make you feel bad about the shot, we give them because it is what the doctors say we are supposed to do, and we trust them. Also, remember, this is just my observation on your situation. I believe there is an aggravated immune response responsible for your Grandsons condition, and this shot just sent the immune system into overdrive again, resulting in the tics/behaviors he is having. (why did they prescribe an antibiotic to begin with?) I would get these tests done, ASO titer and AntiDnAase B titer. (mycoplasma and Epstein barr are good titers to get ran also) These may possibly be elevated and start giving you some answers. Also, please, please try to get your hands on an antibiotic again and give a full course, REGARDLESS of the presence of any type of infection or illness, you are just gonna have to plead with the docs to give it a try, it won't hurt. The antibiotic may help your grandson's condition tremendously.

 

Kelly

[P_Mom]

Oh, I just wanted to say... when you say "I know in my heart they are missing something," you are probably right. God whispers to our hearts and you can never go wrong when you listen to that whisper.....

[judy1270]

Judy,

I am so sorry to hear your story and I hope I can offer you a small bit of hope through my experience. We too saw our first tics after our ds age 3 1/2 at the time received his vaccinations (varicella and hepatitis .

I am not sure which chicken pox vax your grandson got, but some, maybe all, have animal byproducts such as pig gelatin in them that may be an allergy of sorts. Also, some claim that certain vaccines may help promote the spread of candida overgrowth in the body, as do over use of antibiotics. (I am assuming the z pack is an antibiotic?)

Some parents on this forum believe that an outbreak of tics combined with a fever could indicate PANDAS diagnosis or PITANDS-- which means that the child is exposed to strep throat or other virus and their body produces an excess amount of antibodies. Someone else could tell you more on this. Many of these parents treat their kids with antibiotics, saying that the antibiotics will diminish the tics.

In our case we discovered that our son was gluten intolerant and allergic to corn. (Originally he had over 17 allergies in an IgG allergy/intolerance blood test we did.) We also treated him for candida with a special low sugar, organic diet that eliminated wheat, corn, was soy reduced, and dairy reduced, and only used honey, maple syrup or regular plain old fruit for sweetening. We did do probiotics and heavy vitamin treatments for a while but after a year on a special diet he is free from tics and recovering quite well. We now are organic, low sugar, dairy reduced (except Kefir and natural yogurts, butter), and still gluten and corn free.

I hope more people answer you as the day goes on. These kids have various reasons for tics and various treatments that work. You have to play detective to figure it out. The gist of it is that his little system has had a toxic overload and needs to be cleansed for him to get healing.

I have a blog that highlights what we have learned, foods we eat, and recipes for dishes I make. Feel free to peruse it if you'd like. Check back here too, as I am sure other experienced parents will be weighing in with good advice.

Hope this helps.

Caryn

http://healthy-family.org

Thank you I will go to the web-site and corbin did have strap throat I will not give up I will find the aswers.

Thank you so much for your kind words. Gob be with us all.

[P_Mom]

Oh my gosh, I just read that he had Strep throat. Please look into PANDAS!! Strep started it all with my kids!!!!!

[judy1270]

Judy,

I got chills when I read your post and my heart goes out to you. When all us Moms read posts, we all see different things in them. Of course, we all naturally go toward our own experiences, and then try to relay help. We all have such dramatically different experiences with what works for our children, I'll just let you know what I saw when I read your post.

 

Okay, the fact that this came on suddenly with fever (indicator of illness/infection of some sort) leads me down the PANDAS/PITANDS avenue. I think it is easy for a doctor to make a diagnosis of a tic when he sees it, there really are no tests to determine tics, you just observe them. The confusion comes when it comes down to whether it is transient, chronic, or TS. And then, what is the cause? Time answers those questions..

 

Anyway, your Grandson started the Z pack and seemed pretty much okay, then was fine at the pediatrician, so they gave him the Varicella (chicken pox) vaccine. I believe the shot was what made him worse. This is not meant to make you feel bad about the shot, we give them because it is what the doctors say we are supposed to do, and we trust them. Also, remember, this is just my observation on your situation. I believe there is an aggravated immune response responsible for your Grandsons condition, and this shot just sent the immune system into overdrive again, resulting in the tics/behaviors he is having. (why did they prescribe an antibiotic to begin with?) I would get these tests done, ASO titer and Antidnase B titer. (mycoplasma and Epstein Barr are good titers to get ran also) These may possibly be elevated and start giving you some answers. Also, please, please try to get your hands on an antibiotic again and give a full course, REGARDLESS of the presence of any type of infection or illness, you are just gonna have to plead with the docs to give it a try, it won't hurt. The antibiotic may help your grandson's condition tremendously.

 

Kelly

Dear Kelly, I thank you for your kind words and all the info, I will take him back to the dr and ask for antibiotic I know they will give me a hard time. But I am ready to fight the fight. I just don't understand why they refuse to give him an EEG it makes no sense.And why put him on Topamax that is for seizures.

God be with you and yours I will pray for all our kids.

Thank you

[judy1270]

Oh, I just wanted to say... when you say "I know in my heart they are missing something," you are probably right. God whispers to our hearts and you can never go wrong when you listen to that whisper.....

How do I did them to hear me. I tell them when I took him in on the2-4-08 he had neck pain and no fever. And they said he had a tic, take him home. What is it with these doctors do they tic eydis they give a look at a child and the first thing out of there mouth is a tic.

I am so worried and cry all the time and that just makes my grandson feel bad.

Thank you for letting me vent.

[CSP]

Judy,

 

I'm so sorry you all have to go through this. I'll pray for you. Could I ask how old your grandson is? Have you tried some epsom salts baths yet? Keep us posted after you have the PANDAS tests done. Take a deep breath, Judy, this is hard, but you will find the answers.

 

God Bless,

C.P.

[P_Mom]

I have learned through this experience that most Dr.'s do not have the answers for this and I have run into a brick wall with many. Keep looking for one that will listen to you and be willing to help. Sometimes you may have to actually guide them through this and tell them what you want them to do. Keep fighting....you'll get there.

[P_Mom]

Judy,

Sorry I am posting so much right now, but, I keep thinking of stuff after I log off..Plus, I can feel the pain in your words and it takes me back to where I was in the beginning..and I really want to help you. Ask the doctors to basically "humor" you and give you a 10 day supply of Zithromax. That is the antibiotic that PANDAS moms have the most success with.

 

Please keep us posted and I will say a prayer for you tonight.

Kelly

[P_Mom]

Oh my gosh, please forgive me, I did it again! I strongly suggest you have those blood tests, ASO and AntiDNAase b titer, ran.

Just request them and get them done when you go in for the antibiotic, I wouldn't wait to long.

Kelly

[CarolynN]

Hello!

 

Greetings to a fellow Arizonan. I am in the Phoenix area and have been seeing two doctors here for my son with tics. There is one doctor in the Sun City area, his office would be about 2 1/2 hours from you, but I have to say he is a great Naturopathic Doctor. I was thinking you could possibily call his office and do a phone consultation to get some suggestions. His name is Dr. Profrock at Total Wellness (phone number 623-977-0077). The address is 9887 W. Bell Road . I know he is familar with PANDA's. I cannot tell you how familiar. He does work with a lot of people with tics and that is why I go to him. My son is not a PANDA's/PITANDS child. Also I don't know if he would do phone consultations without meeting in person first but it would be worth a try. He is $$$$. I think for the first visit he runs $250 for the first hour. The next visits run $200 per hour.

 

Also I was thinking of another doctor who might possiblily do phone consultations. I have no idea but it could be worth a try. I saw this post regarding PANDA's and a doctor in Chicago who is very familiar with PANDA's. Anyhow here is the information http://www.latitudes.org/forums/index.php?showtopic=3002 .

 

The other thing I was thinking, I don't know how much it would help in his situation, is doing Epsom Salts baths or making an Epsom Salt Lotion. This seems to really help a lot of people with tics. I read about this in the "Enzymes for Autism and other Neurological Disorders" book by Karen DeFlice. She has a suggestion of making homemade lotion with epsom salts to have another way of getting epsom salts into your system to help out with the sulfation system of the body (the sulfation system helps process out toxins, histamine, and also helps with processing neurotransmitters).

 

This is from her book page 244 I quote "Cheap and easy. Heat some Epsom salts with a little water to dissolve them. I put about one teaspoon of water in three tablespoons of salts and microwave for a minute or so. Add more water if necessary. Then mix this into around four ounces of any lotion or cream you like. I have used suntan lotion, hand cream, cocoa butter, body lotion, aloe vera cream, whatever I find that is on sale or inexpensive without the chemicals I am trying to avoid."

 

If you do the Epsom Salts bath you would add 2 cups of Epsom Salts into a full bath tub.

 

I will be praying for your situation. I would also recommend doing a lot of reading up on vaccinations, prior to doing any more shots, because it seems a lot of people on this forum notice an increase in tics after shots.

 

Carolyn N.

[judy1270]

Judy,

 

I'm so sorry you all have to go through this. I'll pray for you. Could I ask how old your grandson is? Have you tried some Epsom salts baths yet? Keep us posted after you have the PANDAS tests done. Take a deep breath, Judy, this is hard, but you will find the answers.

 

God Bless,

C.P.

Hi CSP,

Thank you I will try any thing at this point. epson salt bath I will put him in one right now. I am so lost I feel like the world is turning so slow, I can feel my grandson pain and I can't help. And it is my Doctors fault.

Thank you for your info

God Bless you.

[judy1270]

Hello!

 

Greetings to a fellow Arizonan. I am in the Phoenix area and have been seeing two doctors here for my son with tics. There is one doctor in the Sun City area, his office would be about 2 1/2 hours from you, but I have to say he is a great Naturopathic Doctor. I was thinking you could possibly call his office and do a phone consultation to get some suggestions. His name is Dr. Profrock at Total Wellness (phone number 623-977-0077). The address is 9887 W. Bell Road . I know he is familiar with Panda's. I cannot tell you how familiar. He does work with a lot of people with tics and that is why I go to him. My son is not a Panda's/PITANDS child. Also I don't know if he would do phone consultations without meeting in person first but it would be worth a try. He is $$$$. I think for the first visit he runs $250 for the first hour. The next visits run $200 per hour.

 

Also I was thinking of another doctor who might possibly do phone consultations. I have no idea but it could be worth a try. I saw this post regarding Panda's and a doctor in Chicago who is very familiar with Panda's. Anyhow here is the information http://www.latitudes.org/forums/index.php?showtopic=3002 .

 

The other thing I was thinking, I don't know how much it would help in his situation, is doing Epsom Salts baths or making an Epsom Salt Lotion. This seems to really help a lot of people with tics. I read about this in the "Enzymes for Autism and other Neurological Disorders" book by Karen Defelice. She has a suggestion of making homemade lotion with Epsom salts to have another way of getting Epsom salts into your system to help out with the selection system of the body (the selection system helps process out toxins, histamine, and also helps with processing neurotransmitters).

 

This is from her book page 244 I quote "Cheap and easy. Heat some Epsom salts with a little water to dissolve them. I put about one teaspoon of water in three tablespoons of salts and microwave for a minute or so. Add more water if necessary. Then mix this into around four ounces of any lotion or cream you like. I have used suntan lotion, hand cream, cocoa butter, body lotion, aloe Vera cream, whatever I find that is on sale or inexpensive without the chemicals I am trying to avoid."

 

If you do the Epsom Salts bath you would add 2 cups of Epsom Salts into a full bath tub.

 

I will be praying for your situation. I would also recommend doing a lot of reading up on vaccinations, prior to doing any more shots, because it seems a lot of people on this forum notice an increase in tics after shots.

 

Carolyn N.

Dear Carolyn,

Thank you I am feeling a little better knowing so Meany people are here with the same they going on.I know we are not Doctors but we know our kids and I wish the Doctor I go to would listen to me. I am going to try and find a Doctor In Flagstaff it is a little closer to us. But I print out your post so I have the phone numbers of the Doctors you are seeing. I will go any where they will help him.

Thank you so much and I will be on here a lot

Judy