mar
-
Posts
490 -
Joined
-
Last visited
-
Days Won
2
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by mar
-
-
Welcome, and I am so sorry you have had to find this forum--BUT there are some courageous parents on this forum who have been through it-- I have to say, just reading your post my initial reaction was the same as SF Mom when she said "It's Pandas", as some of what you describe reminds me of my daughter early on. The question to me is "how much" and "how often" are you seeing what you have described? Is it intruding on his life?
Read the Pandasnetwork.org website, it has a wealth of information. Do not be afraid (easier said than done I know), and feel free to private email anyone on here and people will gladly talk to you by phone as well if that would be of help--
We are parents stumbling along and literally "finding" things out --
The "steroid burst" is what helped us see a radical and sudden change in our d. That convinced us it was Pandas, and must be some type of brain inflammation issue--Dr. K in Chicago suggested that as a "test" in a way to see if it was Pandas--
spinning around once is OK, spinning obsessively is something else. All the best--
Thanks for your reply!
Let me explain our situation. I believe my husband has Torrette but was never officially diagnosed as a child. He is a perfectionist, has a temper if things don't go his way (his father is the same). He has the mild tics when stressed (eye blinking, opening of the month, sniffing). And the more I talk to him about this he is starting to realize that he is like that. I have been reading alot about Torrette in the last view weeks and children with the disorder can also have many other thingss like aggression, OCD and axiety. Since my son was a little boy their were so many things that he would do that remind me of his father. He is also a perfectionist, very detailed is his explanations and he is very loving. Loves to be hugged alot and be close which goes the same for his dad. I on the other have had axiety. I am always worried about everything and I feel that alot of my worrying has been pasted on to the kids. A good example would be that I have always told my kids to not talk to strangers to a great extent, no wonder they are werry around people they don't know. This list could go on with many such examples. I actually went through anxiety for a good week when I discovered the torrette and spend time reading the books. Reading the one about axiety reminded me of what I am like. I have since changed my ways and have been showing the kids that all things in life are'nt scary. I have been more easy going with a lot things related to them in the last three weeks, like letting him ride his bike down the whole block and he seems to be enjoying it and if he rides his bike down the block I let him not put his helmet on (still stresses me). These new things I'm doing could be a good reason why my son in his last anger fit mentioned that "I don't care about him". Getting hit by this is pretty rough coming from a parent who cared about everything too much. Could this be because of the way I have been acting lately? Because I am more care free he just thinks I don't care at all.
I emailed his teacher the week he was so anxious and she replied that he is liked well and interacts with many kids. He is quiet with her (he tells me he doesn't know her that well yet but thinks she is a good teacher). He likes going to school, insists on taking the bus home and according to his teacher he seems fine there. He is a smart boy who just got straight A's with minimal studying. He actually said at one point that school seems to easy and he things he should just go a grade up right know.
He has gotten alot better since it all started. There are days where he is back to himself other then some tics. I alot of it might be do to bordem. I think their is alot of changes going on lately and he probably wonders what is going on. I know anxiety takes away to go away especially in younger children. I have been helping him with the coping skills I have read about.
Also, everytime he has gotten strep or an ear infection he has always had a fever or sore throat.
Is it affecting his everday life. I would say no. He is passing out candy with his cousin laughing and having the time of his life right now.
Their I go blabbing again...but its nice to know that someone is listening.
Oh I am not sure if I mentioned this but when I decided to quit my job that is when his massive anxiety started. And once again this is coming from a child who heard over and over how important my job is, that it pays the bills and all. That we wounld'nt be able to take vacations as much iif I wasn't working, that it pays for the house. This was all said throughout the years because I work out of the house part time and they would always complain about me working and not being able to go outside every morning. They hate it when I work from home so we said those things so they would understand that there was a purpose to it.
-
The CaM Kinase it a protein in the blood that is activated by cross reactive antibodies related to strep...... dense reading http://www.pandasnetwork.org/Cunningham.NMpaper[1].pdf. The protein measurement will allow you to determine if your child falls within the PANDAs range, if it at all. You receive the kit from their offices, take the kit to your Pediatrician, get a lab request to draw blood in accordance with instructions, take to lab, draw blood and lab will spin blood, keep on ice pack and ship over night back to Kathy at Madeleine's office. Its a fairly simple process and about 3 weeks you'll have results. They will not be taking samples after November 12th because they are shutting down for the winter holidays. So I recommend you request today.
Don't be scared as this could the answer for your child. Keep reading the posts under PANDAS section, read PANDASNetwork.org 3 times until you can process all the information. Understand the science. FOR SOME it is only the first strep infection that kicks off the auto-immune response and keeps attacking their immune system with each cold, virus and bacterial infection.
Thank You so much for responding to my posts. I just feel so lost and confused with all of this. I am not able to open the pdf file you sent. The link does not go through for some reason. I am sorry if I am prying but do you have a child with Pandas?
-
Its PANDAS..... Call Dr. Kovacevic's office and request a consultation and please request kit from Madeleine Cunningham for CaM Kinase testing.
Kathy at Madeleine office can forward kit: Kathy-Alvarez@ouhsc.edu
Now I am really getting scared. What is the CaM Kinase testing. How is it done. How will I know that he has it for sure. Is their a test that proves you have it.
Is it curable?
He hasn't had strep since Feb and when he got it he had a sore throat, redness and a fever. The only thing he has had now is bad allergies and I beleive a sinus infection on Sept 29 the behavior started on Sept 18. Could this have started it.
Just yesterday he told me that he is sick of me asking if everything is ok with him and always watching him. He saids he's fine. I am starting to feel like I am driving him nuts with all my questions and always watching him.
-
Mar:
Dr. Kovacevic is in Chicago and he has been treating PANDAS for 10 years. His website is webpediatrics.com.
Elizabeth
Thank You so much for your reply!! I feel like I am going crazy. I don't know what is going on with my son or if it is even Pandas.
My son who is 7 1/2 has has minor tics since he was about four. They would only last four a couple of weeks when he was younger and it seemed to occur on Oct or Nov. last year I noticed more varieties, he has had (eye twiching, throat clearing, mouth opening, and lip licking. In the last year or so I have noticed different things like rolling on his head back and forth, or one time spinning in place while watching tv on the couch. He has had bad allergies since the beginning of September . This past September I have choose to quit my and the day after me and his father were discussing this he woke up being very moody, sad and was acting very strange for about a week. All his symptoms resembled axiety. When I finally spoke to him he said he was worried about having no money. I reassured him and he felt better. But after that Inoticed alot of fears in him. He seemed to be worried about everything. He kind of goes back and forth but his before is still different. He gets hyper at times, very silly and has episodes of anger. He has been pushing his siter more often and seems irratable at times. He always states nothing is wrong when I ask him. I was on the torrette post and started assuming it might be a food sensitivity. But the couple of replys I received told me to look into Pandas. His father has ticks by the way which is why I was assuming Torettee. I am so sorry for blabbing and talking to much but I have no idea what it could be. I don't know if its torrettee with anxiety or could it be Pandas. I forgot to say that he has had many ear infections in his life and also had strep several times.
Thanks Again
-
Mar:
Dr. Kovacevic is in Chicago and he has been treating PANDAS for 10 years. His website is webpediatrics.com.
Elizabeth
-
Mar:
Dr. Kovacevic is in Chicago and he has been treating PANDAS for 10 years. His website is webpediatrics.com.
Elizabeth
-
Does anyone know of a Pandas doctor in Illinois?
-
Does anyone know of any PANDAS doctors in Illinois??
-
Welcome. As I am sure that many people will echo, you may want to visit the PANDAS board. If you son has had strep this may be PANDAS. Was the strep test a rapid test? Many have had the 72 hour (I think) test.
San
Thank You for your reply. Yes the strepo test was a rapid 10 min results. he has had strep many times and it usually does appear on that test. Since his dad has ticks I didn't think that it would be Pandas but torrette. But I will take a look at it.
Thank!!
Many children with PANDAS have a "genetic vulnerability" to TS or OCD. My dd has PANDAS with severe onset OCD. We have a lot of OCD in our family, but hers is clearly PANDAS based, and is treated with anti-biotics and steroids. It could be either, but it is worth looking into it, especially with your strep connection.
What are some of her severe OCD signs. When he had strep back in Feb he went back for a retest with the swab of the throat which takes 10 min for results and it came back negative. Could it still be Pandas? I read other posts where their child will not go outside or not sit still during dinner. This is not how my son is. There was a major family change for us with me losing my job and that is exaclty when he started acting very anxious and was a completly different child until I spoke with him and he told me he was worried we would have no money. I reassured him and he seemed alot better. Though he is very anxious about things still but nothing like he was that week. I though that because of the axiety he went through it will take him a little bit to shake it off. He is very sensitive and tends to worry alot. He is shy with strangers. I was thinking because of his allergies he might have some sensitivities and was thinking about getting the IgG test. I am really confused now. What are the major signs of Pandas? Sorry for blabing on and on. Thank You for the replies!!!
-
Welcome. As I am sure that many people will echo, you may want to visit the PANDAS board. If you son has had strep this may be PANDAS. Was the strep test a rapid test? Many have had the 72 hour (I think) test.
San
Thank You for your reply. Yes the strepo test was a rapid 10 min results. he has had strep many times and it usually does appear on that test. Since his dad has ticks I didn't think that it would be Pandas but torrette. But I will take a look at it.
Thank!!
-
Hello-I am new to this board. Let me explain my situation. I beleive his father has torrette after reading up on it. My son is 7 1/2. I first noticed facial tics (eye blinking) around the age of 4 1/2 in the months of Oct- Nov. They would then go away. The following Oct-Nov they came back and more tics were added (mouth opening and throat clearing). They seem to go away in the summer. Since September of this year he started having allergies which are still going on some. He has bags under the eyes, always looks and says he feels tired. Stuffynose, sneezing. I went to an allergist in September, they only tested for 15 things (no food) and it came out with oak tree, grass and coachroaches. The weekend of Oct 17 he got this bad flemy cough and hoarseness in voice. By monday it was affecting his breathing. Went in for a nebulizer, tested negative for strep and Influenza. Once again got antibiotics for supposedly having a sinus infection. Just to let you know he has been getting strep through every year. During these allergy month and for the first time this extreme. I have noticed that he has become very irritated, mad, mood swings and very stressed. I have never seem him so stressed. I actually did the spitting test in the water this morning and I beleive I seen the lines in both his and my daughters.
I just relized Torrette and all these other things in the last month and am very overwhelmed. I do not want him to be on any drugs and my husband is against it too. The tics do not seem bad at all right now just some neck jerking which I think coincides with the stress. and he did have lip licking last month which makes them so dry and hurt bad. But he is over that for now.
But the yeast test I did this morning with the spit and water is making me wonder. Note: he is currently on amoxicillian (don't know if that would have any significance but I did notice it in my daughter which she is not on anything.
Please Help!!
Panda doctors in Illinois
in PANS / PANDAS (Lyme included)
Posted
He was on Cephalexin 250mg 10 days. 9/29/09
He was on amoxicillin 400mg 10 days 10/19/09
It did clear up his nose problem and allergies are doing better (has taken claritan at night for two weeks)