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[Williams Dad]

First I would like to say thanks again. I will try an answer a lot of these ? to the best of my knowledge. KIM'S ? first. As far as the flu shots go, I do not know what type it was ,but will be finding out. As far as the picky eating part, that should be easy. He is not a junk food eater at all. He doesn't like candy, cakes, He does like his cookies (oreo) occasionally. He loves pbj, fruits and veggies, french fries, some chicken and cereals (crispx and cheerios) Loves Milk (chocolate). Ok some junk food. I guess i mean candy and such. Thats about it. So I think it would be relatively easy to find a food allergy( I hope). Yes he is a gagger, he will breakdown and cry a lot when we go to get the strep test done. (hates it a lot) My son is very mild manner most of the time. (laid back you could say). I am going to be keeping a log of his habits. Starting Monday, Everything he does, When we play together , when he plays with his friends, with complete strangers (kids I mean). Everything i can think of I will be logging it. Just to see if I can find triggers for his tics.

 

Caryn. No I have not called a DAN Dr. yet. We have an appointment with neurologist Monday. After that I will be looking into a lot more things. My wife's friend has a son that has Autism. We will probably be talking to her about soon. Not sure where the Dr. is from. As far as history in the family. My wife's mother has Alzheimer's bad, beyond bad I should say. I know that I was a little ADD not ADHD. I was to very mild mannered, shy almost. My MOM very OCD, cleans none stop. Mood swings like crazy (I like to think almost Bipolar) never diagnosed. My sister the same OCD cleans none stop washes hands constantly. My wife's sister is 48 years old and is severely handicapped (wheel chair most of her life). That is about all I can think of right know.

 

Michele, No need to say sorry. I live by Bowling Green Ohio, about 20 mins south of BG. Thank you for all the info you have given us. I will be looking into a lot of the Dr.s you posted. Very very appreciative for that. Know about the speech and such you mentioned. He does not lack any of those skills. He speech is out standing, eyes are perfect (just had them checked) and motor skills normal for a 5 year old. Teacher tells us he is in the top of his class. He can spell things most of the others cannot, (sounds words out) he actually can do some math, know the handwriting not so good, but can write all his letters. He is very athletic , currently in gymnastics, Plays baseball, throws and hits very well.

 

bmom. The Dr. cannot go near his mouth , with out a complete breakdown. The separation anxiety has increased,(not wanting his mother to leave him, not wanting me to go to work, cannot be in a room by himself for even a short period of time) Thinks he sees things out side at night,< (most recent) he will lock the door, even if we are with him. I don't think these things are extremely bad. Its not a total breakdown with most of these. Its just somethings I have noticed.

 

 

To everyone, I hope I have answered most of your ?. To the best of my knowledge. I once again thank all of you.

 

Sincerley, Williams Dad

[ajcire]

It is so hard isn't it! I am in the process of trying to determine if my 6 year old ds has pandas. In hindsight he had the throat clearing and eye blinking when he was younger and the dr's just said it was a common childhood tic.. no worries.. and sure enough they went away... Fast forward a few years until now this past august.. ds just randomly out of the blew freaked out about being left alone at bedtime. 2 months later he is still having issues with needing us to sit outside the door and to constantly check on him. When we thought it was just a behavior issue and tried to not stay with him at the start of all this he went crazy in a way I never saw him. He was always so mellow. Then I came got online and saw about pandas and it all clicked. We had strep in our house for the first time this past year... all of us had it, ds had it 2 times and wouldn't you know it... the sleep issue in August happened 2 days after my daughter was diagnosed with strep. I had my ds checked and he did not test positive for it. I kept reading and saw that often these children are bright, good at math and I started to really get worried as this described my ds who was a fluent reader by 4 and equally ahead in math... Then I noticed him using the bathroom a lot when home as well as 2 times at night. I then remembered he went through a time of hoarding garbage a few years ago that started suddenly and stopped just as suddenly... then I realized he is a bit compulsive on handwashing... not enough to effect his life but enough that I turned to my dh one day and said, "Goodness... he sure is compulsive about handwashing!"... By now I was on the computer researching like a madwoman. My dr... .one told me I was crazy and the other gave me the name of another dr. to see who I will be seeing in 2 weeks thank goodness!

 

I like you am thinking he isn't as severe as so many of the children being described are but am terrified that this could just be the beginning of something. The thing striking me the most about what you said, probably because it is the thing that made me first start researching this is the sudden issues with being left alone.

[michele]

Dr. Tanya Murphy does not recommend removing the tonsils. She said every child she has had in her PANDAS study who dropped out to have their tonsils removed called her back later asking to get back in because the PANDAS behaviors returned even if they were better at first. Her opinion the tonsils are a protective barrier.

Also Greg, I never realized the fine motor delays until I had him tested I just knew handwriting and cutting and coloring were harder for him. He always did gymnastics from age three. He plays soccer and likes sports but he is just not as coordinated as some kids. He will start basketball soon. For example he has not been able to learn to ride his bike yet. However I think it maybe due to fear of falling down and getting hurt. I think he could do it because he has come close. As for speech he has spoken well since an early age too. She just said a raspy voice could be making speech delivery difficult. As for the vision I was shocked this year when the eye Dr. said one eye was working harder/overcompensating for the other eye. He always passed ped eye exams. This was our first visit to a ped optometrist. This may be the cause of the visual perception issues. There are a lot of small issues related to the PANDAS. Read TS plus it has alot of the co morbid conditions that accompany tic disorders. http://www.tourettesyndrome.net/conditions.htm

Greg,

I was just wondering, when you say you have noticed a huge difference since removing his tonsils, could you tell me what? In the negative? Thank you.

[Williams Dad]

OK took William to the neurologist Yesterday. This Friday he will be having his ASO titers tested alone with his copper level and some other test with the blood. He was concerned about the Strep in our family. The neurologist told us that he has herd of PANDAS, but was not completely familiar with it. He did know about the quick onset of symptoms in Pandas . He did not fell that William had these symptoms, but a normal boy with mild anxiety as a lot of children do. He felt it was not anything to be concerned about at this point. He said that his ticks were mild also, and to just monitor them for the time being. So where to go from here is the big ?. Will he get strep and his ticks and minor anxiety get worse? I don't know. I guess we will just have to play the waiting game and hope for the best. I will be keeping a close eye on him and logging his tics and other symptoms. And letting William be William for the time being. I do feel more and more that William might just be a boy with a mild tic disorder. And I might have been reading into to much. (we are still having him tested for food allergies)

 

I want all of you to know, That you will be in my prayers . I thank you all for the advice you have given me and William.

 

 

Thank you, William's Dad and Family

[bsimon3]

Another Dr. I found in Ohio that has been a lead researcher on PANDAS and tics is Dr. D. Gilbert in Cincinnati. He is the head of the tic neurology center. I have emailed him but have not seen him yet. He would not tell me over email how he treats PANDAS. He may be a local person who would know PANDAS exists and be able to treat it. Like I said no Dr's I have seen in Ohio, and we have seen a lot, had any background on PANDAS except Dr. Demio. Dr. Gilbert may be a great one to see. He has done PANDAS grants at his hospital. Let me know what you make out. http://www.cincinnatichildrens.org/svc/fin...ald-gilbert.htm , http://www.pubmedcentral.nih.gov/articlere...i?artid=2413218

 

Michele, did you end up seeing Dr. Gilbert in Cincinnati? My son has been ticcing for 1.5 years (started after a high fever that lasted several days; the STREP test given by our doc came back negative) and we still have no diagnosis, no leads. We are lost. We are in Michigan and I wonder if a trip to Cincinnati to see Dr. Gilbert would be worthwhile. Any help would be greatly appreciated.

 

Beth

[Kayanne]

Another Dr. I found in Ohio that has been a lead researcher on PANDAS and tics is Dr. D. Gilbert in Cincinnati. He is the head of the tic neurology center. I have emailed him but have not seen him yet. He would not tell me over email how he treats PANDAS. He may be a local person who would know PANDAS exists and be able to treat it. Like I said no Dr's I have seen in Ohio, and we have seen a lot, had any background on PANDAS except Dr. Demio. Dr. Gilbert may be a great one to see. He has done PANDAS grants at his hospital. Let me know what you make out. http://www.cincinnatichildrens.org/svc/fin...ald-gilbert.htm , http://www.pubmedcentral.nih.gov/articlere...i?artid=2413218

 

Michele, did you end up seeing Dr. Gilbert in Cincinnati? My son has been ticcing for 1.5 years (started after a high fever that lasted several days; the STREP test given by our doc came back negative) and we still have no diagnosis, no leads. We are lost. We are in Michigan and I wonder if a trip to Cincinnati to see Dr. Gilbert would be worthwhile. Any help would be greatly appreciated.

 

Beth

 

I believe that in the following thread, Dr. Gilbert is being discussed...I also think that some of the posts were deleted...you could pm those forum members directly that have experience with him.

 

http://www.latitudes.org/forums/index.php?showtopic=5087