judy1270
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Posts posted by judy1270
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Ok, I just went back to read about Guillain-Barré Syndrome and it talks more about rubbery legs as opposed to legs that are asleep. Just wanted to mention that now that I have probably scared you to death. And I will say that my daughter complains often about her legs falling asleep. I even mentioned that to her doctor.
Has you doctor said why they fall asleep........and yes now my heart is beating faster!
I'm going to look up, Gullain Barr'e syndrome...thank you
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Ok, I just went back to read about Guillain-Barré Syndrome and it talks more about rubbery legs as opposed to legs that are asleep. Just wanted to mention that now that I have probably scared you to death. And I will say that my daughter complains often about her legs falling asleep. I even mentioned that to her doctor.
Has you doctor said why they fall asleep........and yes now my heart is beating faster!
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Thank you. I will read anything you have on this..
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I'm not even sure I want to post this but I think information is good so I will just tell you our experience. After some vaccines last year my daughter was complaining about her legs. The complaints ranged from hurting to not feeling her legs. I especially remember her wobbling on them and telling me they felt wobbly. I called my doc and he told me to rush to the ER and have them check her for Guillain-Barré Syndrome. If you look it up, it's scary. And please understand, this may not be what your doctor is thinking at all. I think I would call him and ask for more details if it was me. Again, I am so sorry to post something so scary and I hope I am doing the right thing. On a good note, they evaluated my daughter in the ER and did not think she had the syndrome. The leg issue passed within a couple of days.
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Thank you, I would like to know the doctors name......still trying to work this form..I hope, I'm doing it right.
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Hello........How is everyone doing? Tired and worried for two years now! (Thats Me)
Some of you have read my posts...some don't know my story and I'm so tired today. I can't go into it. It was a long night.
Today, I need someone to tell me if they have had their children say anything about their legs not wanting to wake up in the morning. Corbin's is telling me his legs will not wake up in the morning. I called his doctor and all he said was keep an eye on him. Is that normal? Shouldn't he tell me to bring him in.
Corbin has been seeing this doctor for two years now.( He is taking Clonidine 3 times a day ) 0.1mg 2 in the morning 1 noon and 2 at bedtime. Dr. Johnson put him on the Clonidine to control the jerking of the head and nick...He has Pandas. It came on after he went to his WELL CHECK when he turned 7 they gave him a chickenpox booster shot.......thats when the jerking started........and he jerks real bad when he gets sick.! which is all the time.
Dr. Johnson is the only doctor in my area.....and he only See's him two times a year. when he comes to Flagstaff AZ.
I have looked all over for a doctor in the Kingman area and can not find a doctor.
I'm so sad,,,,,,,all I do is cry and can't find any help, I try to come here and put my thoughts into words and I get so upset I just stop typing and lay down.
But not this time, Corbin's little leg's are not waking up in the morning he just lays there...and he tells me when my legs get up then I will....................And his doctor tells me to keep an eye on him...what is happening!
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My heart goes out to you and your children, this Forum has helped me so much the people here know a lot about Pandas.
I don't get to post often, but I try to read all the info on Pandas.
The people here are wonderful, if they can help they will.
God Bless you,
Judy
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Judy, what medication is your grandson currently on? and what dose (how much does he weigh)?
From reading your old post 2/2008 he sounds likes PANDAS. Is he on prophylactic Azith? advil? Has he ever had a steroid burst?
Also, some find it helpful to make a video of their kids tics/movements to show a doctor...if the tics are not always present (or not always severe).
Good Morning,
Thank you so much for replying to my post, Corbin is taking Clonidine 1mg 4 times a day. They just upped the meds by phone 4 days ago..Corbin was taking 1 at night and now he is taking 2. It did help the jerking for a day..it came back today..my heart just broke for him..he had said " Look no Jerking" last night..
I'm calling his doctor today, right now..!
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Did anyone ever mention the possibilty of PANDAS to you prior to that phone call?
How are your grandson's tics at the moment? Like the previous post said, try to find a doctor familiar with PANDAS. Also, until then, if your grandson's tics get very bad again, either drive that long way to have him seen in person (they may actually think you're exaggerating over the phone) and demand a strep test culture. Granted, as other will say, it doesn't always come out + even with PANDAS, but it is a start in trying to figure out if there's a connection. Also, if they are off the charts, if it's okay to take with his other meds, give him a regular dose of Ibruprofen, give it an hour, and see if it helps at all. But first, make sure it's ok to combine w/ other meds. If needed, call a pharmacist and ask if it's ok to take w/ existing meds.
Finally, does he have any other "symptoms" or odd behaviors when the tics are bad?
Hi Vickie,
Thank you for your input! I will try the Ibruprofen I think that will help with the pain. Corbin can jerk so hard..it hurts his neck.
They did up his Clonidine from 3mg to 4mg four days ago, by phone. It it slow the jerking for one day..they came back today..I'm callilng his doctor today to let him know.
I just don't think it is a good idea to up meds by phone.
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Yes I am So....Obsessed that is all I do, I can't think of anything else. And I cry all the time!
I know, it is not good for my grandson to see me like this. I feel so helpless.
We all just what to help our kids get better, people that are not around our kids alot don't seem to understand what we are talking about.
I know my grandson can be almost ok for a day and then..he just starts jerking out of his skin.
And then I start going over the whole day trying to remember what he ate or did.
Yes I'm Obessed.
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Hi Judy,
Sorry to hear you are having such a hard time finding help for your Grandson. I'm wondering what type of Doctor you have taken him to and if they have done any blood work on him other than the ASO & Dnase?
I would suggest trying an Immunologist is you haven't already. In the last month or so, we have discovered a lot of these kids have immune systems that aren't functioning correctly. You should check into having the following blood work done:
IGG & IGG Subclasses
IGM
IGA
Pneumococcal Titers Test
Diptheria Titers Test
Tetanus titers Test
Go to this website and you can search for one in your area: www.jmfworld.com or you can call the Immune Deficiency Foundation at 800-296-4433
Sam
Sam, Thank you for this phone number I'm going to get on the phone right now!
Corbins doctors don't seem to know anything about PANDAS, I know they are trying but they just don't have the info to help Corbin.
Thank you...I'm still trying, To get use to useing this Forum I don't know if I'm useing it right when I reply.
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I feel badly for you and no one has responded. Here is a list of DAN doctors in Arizona. Don't know if any of them can help but you should try at any rate. Call and ask them if they can help with PANDAS.
Geoffrey Radoff, M.D., M.D.H.
Alternative Medical Care of AZ
2525 West Greenway Rd., Ste. 210
Phoenix, AZ 85023
ph: 702-755-6475
fax: 602-993-0207
Cindy Schneider, M.D.
Center for Autism Research and Education
4045 E. Union Hills Drive, Suite 116
Phoenix, AZ 85085
ph: 602-277-2273
fax: 602-277-2283
Alan K. Ketover, M.D., M.D.H.
The Valley Clinic
10595 N. Tatum Blvd., Ste. E-146
Paradise Valley, AZ 85253
ph: 602-381-0800
fax: 602-381-0054
Matthew Baral, N.D.
Southwest Naturopathic Medical Center
8010 E. McDowell Rd., Ste. 111
Scottsdale, AZ 85257
ph: 480-970-0000
Jessica Tran, ND
8010 E. McDowell Rd., Ste. 111
Scottsdale, AZ 85257
ph: 480-970-0000
fax: 480-970-0003
Eli Ber, NMD
10752 N. 89th Place B213
Scottsdale, AZ 85260
ph: 480-634-6172
fax: 480-634-6975
Martha M. Grout, M.D., MD(H)
Arizona Center for Advanced Medicine
9328 E. Raintree Drive
Scottsdale, AZ 85260
ph: 480-240-2600
fax: 480-240-2601
Joel Morgan, NMD
Pediatric Solutions Medical Center
633 E. Ray Rd., Suite 110
Gilbert, AZ 85296
ph: 480-632-0757
fax: 480-619-6393
Maureen Schwehr, N.D.
621 N. 6th Ave.
Tucson, AZ 85705
ph: 520-623-1033
fax: 820-742-3846
Thank you so much for this list, I am crying right now..just reading the replys..I can't tell you how much all of you have helped..
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Isn't this the hospital that several members went to and they got no help b/c they don't believe in or treat PANDAS?
The same thing is going on here, I just got off the phone with a doctor in Phoenix. He said he did not believe in PANDAS..he is so closed minded about this. I no!! they don't have a clue what is going on with our kids, there are so many kids that have some kind of movement disorder.
I am fed up! I what answers.........Why are there so many kids sick with this.
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School is starting this week and I was wondering if anyone has found any really good articles on PANDAS and/or Separation Anxiety that they are going to share with the teachers and nurses at the school. IMO they do not need all the medical jargon-just real life examples and simple explanations of what to expect.
Last year I felt like no one understood anything about what was happening with Shae. I truly believe they thought I was in denial about my children having some major behavioral issues especially with her severe separation anxiety.
Anyone have anything they would like to share....
Sam
I know how you feel! They look at you like you have lost your mind.
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I need help!!!
I just don't get how doctors can be so clueless on how to treat Pandas. I live in a small town and the doctor that my grandson sees is two hours from me, and this doctor only sees my grandson every 6 months. He saw him July 9 of this year, Corbin was doing OK that day.
Two days later he was jerking so bad he could not hold his spoon. I called the doctors office to tell him what was going on. They told me the doctor was on vacation and just go on and up his meds.
This has been going on for two years now. I just got off the phone with a doctor from CRS.
She said if my grandson gets strep this year, and starts jerking out of his skin. That no medication will stop him from jerking.
"WHAT" I hung up on her.........She has to be wrong about this........Please someone help me out on this one.
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My friends daughter (teenager) has had tummy aches for about 6 months. She finally took her in for a GI test and it was positive for strep!! So she has strep bacteria in her gut...Sarah
Very interesting. How did they find it there and did she have any symptoms other than a tummy ache--such as constipation??
Can the blood test on ASO level show strep in the gut?
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I have a question for all of you parents who feel that vaccines affected your child (or children) in a negative way. If you were going to have another child, would you vaccinate fully & accordingly to the schedule, delay & selectively choose vaccines, or refuse all vaccines? As I do my research, I'm really interested in what parents have to say who have children that were affected by vaccines.
Hi,
A year ago I would have said give your children there vaccines but, Not now!
My Grandson was just fine before he had his booster shot for, Chickenpox. Now he jerk all the time!
You can read my post on this.
They still can not tell me what happen, they say he has PANDAS or, he has Tourettes they don't know!!!!!!!!!
He has been in and out of the hospital for, a year now.
Before that BOOSTER SHOT HE WAS JUST FINE!!!!!
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Judy,
There is some discussion about potassium bicarbonate on the TS forum that you might want to read through.
http://www.latitudes.org/forums/index.php?showtopic=3497
I guess I'm wondering if there is a chance that his potassium was low prior to the illness that caused the mesenteric adenitis or if they figured it was low due to the vomiting?
I had never heard of Mesenteric adenitis before but after looking it up, I'm wondering if they ever determined what type of infection caused it?
I know your grandson had a slight fever and stiff neck when this whole thing started. They gave him the chicken pox shot and tics and behaviors became very intense. He also tested positive for lupus antibodies (scanned some old posts, even though I remember your little guys story quite well). What I don't remember is if he ever tested positive for strep during the onset.
For anyone who is not familiar with this condition that may have some idea's to help Judy, here is a little info
http://emedicine.medscape.com/article/411043-overview
Pathophysiology
Mesenteric adenitis is most frequently caused by viral pathogens, but other infectious agents have been implicated, including Yersinia enterocolitica, Helicobacter jejuni, Campylobacter jejuni, and Salmonella or Shigella species.1, 2, 3 An association with streptococcal infections of the upper respiratory tract, particularly the pharynx, has been reported. In younger children and infants, concurrent ileocolitis may be present; this finding suggests that the lymph node involvement may occur in reaction to a primary enteric pathogen.
http://en.wikipedia.org/wiki/Hypokalemia
Hypokalemia refers to the condition in which the concentration of potassium in the blood is low. The prefix hypo- means low (contrast with hyper-, meaning high). Kal refers to kalium, the Neo-Latin for potassium, and -mia means "in the blood."
Normal serum potassium levels are between 3.5 to 5.0 mEq[1]; at least 95% of the body's potassium is found inside cells, with the remainder in the blood. This concentration gradient is maintained principally by the Na+/K+-ATPase pump.
and
A more common cause is excessive loss of potassium, often associated with heavy fluid losses that "flush" potassium out of the body. Typically, this is a consequence of vomiting, diarrhea, excessive perspiration, or losses associated with surgical procedures
Hi, Kim
Thank you for the links and, I will look them up and read more about Potassium. The doctors did not tell us way they where giving the potassium to him. I did call his Neurologist but, he has not called back.
But, as of today My little grandson is jerking like a fish out of water.
Kim: Thank you for the info on the levels of potassium I'm picking up his records from the hospital on Monday so, I will take a look at the level of potassium.
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Hello,
It has been some time since I have posted here but, I have been busy with My Grandson.
He was diagnosed with PANDAS all most a year a go.
He has been taking "CLONIDINE" 0.1MG 3 times a day and, he still jerks his head and his hands.
The Clonidine helps him if he was not taking the med's he would be jerking like a fish out of water.
Some thing interesting happen this week he became sick he was running a fever of 100.8 and he was throwing up and, his tummy was hurting him.
We took him to the ER they stared a drip of "Potassium Chloride" with in a 1/2 hour his jerking stopped.
They told us he had," Mesenteric Adenitis".
For two hole days he did not jerk.
He is home now and he is jerking could it be he needs Potassium?
He sees his Doctor on Monday I am going to ask for tests.
Douse any one here know anything about Potassium Chloride?
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my son had an accomodation built into his 504 plan at school to be allowed to chew gum or suck (healthy) candy as it helped him too.
Judy, I dont want to put a damper on things for you, but this is just one of a number of helpful coping mechanisms and not a "cure" for TOURETTE tics. It was actually something recommended by the CBT therapist when my son was having a lot of mouth/teeth blended tics/OCD. For my son, playing musical instruments and doing other artistic/creative things etc also seems to dampen tics.
also, as an aside, chewing does also stimulate digestive enzymes so there may be added benefit from that
Thank you, I thought I had found something of a miracle cure.
I know so little about TOURETTES..
Is there any medication that dose help with the jerking,my Grandson tells me his neck hurts all the time.
He dose have an appointment today with his new ped Doctor.
I feel so helpless.
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Wow, Judy,
If I may, I would like to recommend a gum -- Xylachew and Xlear gum both are made from xylitol, which is an antibacterial, antiviral, antifungal. It is gluten free, and does not contain colors, preservatives or sugars. Try Whole Foods, near the checkout. Congratulations. Please keep us updated.
Tami
Thank you I will try that gum..
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As some of you know I have a Grandson that had seizure in January and from that time he has been seen by a few Doctors.
We still do not know why he had a seizure or why he is still jerking his little head to the right.
One Doctor put him on Clonidine and one Doctor put him Topamax.
I told both Doctors that I did not what him on these drugs, and my Grandson did not take the drugs.
These Doctors did not do an EEG on my Grandson so I did not trust them.
These where different Doctors and different times we where not seeing two different Doctors at the same time.
I finally had an EEG done! and this will surprise you it was done at the rquist of my Grandsons Rheumatologist Thank God the EEG was normal.
ALL THAT ASIDE.
My Grandson asked for a piece of GUM TODAY he has never had a piece of GUM I know that sounds strange but it is TRUE.
YOU WILL NOT BELEIVE THIS IT STOPPED THE TICS I HAVE WATCHED HIM ALL DAY, TIC FREE ALL DAY.
GUM!!! CAN THIS HAPPEN WITH GUM??
I have been holding by breath all day.
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He is still jerking his head to the right. Sometimes all day Sometimes just a few times a day.
It is driving me nuts.
The doctors have no clue what has caused this to happen.
Thank you for asking Kim.
Kim Thank You for the Web-site.
That is what they are checking for Lupus of Infection!
Thank you Thank You
This Site is the Best Place to find Information for our kids
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He is still jerking his head to the right. Sometimes all day Sometimes just a few times a day.
It is driving me nuts.
The doctors have no clue what has caused this to happen.
Thank you for asking Kim.
PANDAS
in PANS / PANDAS (Lyme included)
Posted
Thank you, I'm on the phone with his doctor they are telling me to take him to the ER.
We are walking out the door/