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Mom04

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Posts posted by Mom04

  1. Chemar - and everyone else - you are awesome!! So sweet to be helping and caring for us, whom you don't know. I will definitely keep you all posted. I know how much work goes into being a mom and/or dad, and especially a parent devoted to a beautiful child with special needs (if that's the 'right term').

     

    Laurie

     

    sounds like you are making good progress in following all the right steps Laurie!

     

    I hope you will get lots of insight to help with a diagnosis, and so be able to implement the best treatments and see healing begin

     

    keep us posted please :)

  2. I will definitely get him in for a strep test, thanks. And, yes, I'm keeping the April appointment for a 2nd opinion. In the meantime, I phoned a psychologist that we met about a month ago when we first heard from the school. He said he didn't suspect Tourette's either, but told me that we still don't have a diagnosis (which is true). So, he's willing to work with us to first, figure out what is going on, then come up with a "treatment" plan.

     

     

    The nurse's statement made me nauseous. Seriously, I am sitting here trembling. My son, or any of my 3 kids, do not get symptoms of strep. OMG. If I brought my son to the office you were at today before I knew he had PANDAS, he'd probably would be institutionalized right now, full with SSRI's, and I would never have my boy back again. It will just get worse if he has an infection and it's not erradicated. He's 5 like your son.

     

    That statement alone makes me say that I would not trust that office. Please take him to the ped for a strep test. Please go to that other neurologist. Whether it's the disorders this one said he had, TS, or PANDAS, get a second opinion!

     

    Like I said before, get the rapid...that comes back negative, make sure they run a culture....that comes back negative, you can have blood tests doen to see if there was an infection. IF by any chance he has PANDAS, it's actually common not to have symptoms of strep.

     

     

    They suggested behavioral therapy. I'm not surprised. I will be making some calls today to get him into therapy, but in the meantime, I am keeping our April appt with a different Neurologist just for a 2nd opinion. Incidentally, I brought up PANDAS, and the nurse quickly said "we would never test for strep unless he showed symptoms". Oy vay.

     

     

    Laurie

  3. Ha! I agree! Of course, I'm such a "wuss" and assume the doctor knows best, so I didn't push it like I thought I would. Before the words "Tourettes" and "tics" came into our vocab, we met with a wonderful Psychologist. I'm thinking I'm going to call him again, because, let's face it, therapy can help everyone! I believe he specializes in Child Psychology, so that's a good place to start anyhow.

     

    Do you think it was smart that we met with a Neurologist first? (As opposed to a Psychiatrist, which some people recommended?).

     

    By the way, after they said my son doesn't really have 'tics', I said to them....well you didn't see or read my whole list yet...and proceded to ramble on and on about the "simple" motor/vocal tics like throat clearing, spitting, eye blinking, etc. They still said, "nope". ??

     

    Hi Laurie

     

    glad the appointment went well, tho I dont fully agree with their saying TS tics are "simple"...in fact they are defined as simple and complex tics, motor or vocal, where for example an "uh" sound would be a simple vocal; tics while a string of coprolalia sentences in a mini tirade would be more complex tics. Similar with motor..an eye blink would be simple but a series of eye rolls, blinks etc or walking while twirling or kicking is complex tics

     

    this is one of my favorite sites for explaining TS http://www.tourettesyndrome.net

     

    it does sound tho like your son doesnt have TS tho do be careful on just accepting the behavioral dx as well....if they are uneducated re PANDAS, they probably are so in terms of what some other "triggers" can do to both the physical and the mental/emotional health !!

     

    cognitive behavioral therapy with a gentle therapist is a very beneficial thing so hopefully this will be an added help to your son, while you continue with the diet and check into PANDAS and other possible triggers

     

    one thing most of us here have learned the hard way is we often have more background knowledge than the docs do!! we just need their smarts in the medical field to guide us thru all this. That is why it is a rare treasure to actually find a physician who gets it, or is at least willing to educate themselves with an open mind about stuff one brings to them, rather than just to dismiss it from ignorance or unwillingness to think outside of the dusty old medical textbook!

  4. Thank you everyone for your tips and advice.

     

    After spending 2 1/2 hours with the Neurologist last night, they said they are 100% sure he does not have tourette's. They listened to our history and symptoms and performed some physical tests on my son. They said that his behavior isn't really "tics" either. That "tics" are more simple, I guess is the word, and my son uses complex phrases that make sense. I'm probably writing this wrong, but hopefully you get the gyst.

     

    So....their diagnosis? Impulse control, hyperactivity and some social anxieties. As I've stated before, Tourette's really didn't seem to fit...at least with the stuff I have been researching on my own. Although I am tremendously relieved, I'm still a bit weary because his actions really seem involuntary. But perhaps that comes along with difficulty with impulse control?

     

    They suggested behavioral therapy. I'm not surprised. I will be making some calls today to get him into therapy, but in the meantime, I am keeping our April appt with a different Neurologist just for a 2nd opinion. Incidentally, I brought up PANDAS, and the nurse quickly said "we would never test for strep unless he showed symptoms". Oy vay.

     

    If therapy helps, then great. In the meantime, I also plan on taking all your wonderful advice and starting with some supplements and a diet change. I had the opportunity to sit in his classroom this morning, and he was awesome! Nothing like they described, but it could have been because I was there.

     

    Laurie

  5. I'm starting to get that impression after reading on this board. I plan on DEMANDING a strep test and a discussion on PANDAS, because as I said, there is no history of any neurological disorder in my family. Hopefully, the Neorologist at Children's Hospital is a bit more educated since he deals with just children and this is his specialty.

     

    Hi - I'll post it now for you. I don't want to be flogging any dead horses but just be aware that few drs seem to recognise or treat PANDAS, although the numbers are growing and some still adamantly believe it doesn't even exist. Good luck :-)
  6. Thank you Dut! Would you mind posting the link to the OCD behaviors topic? I'm having a hard time finding it.

     

    We finally got an appt today at Boston Children's with a neorologist. I can't wait, but I'm nervous, too. I am going "armed" with tons of notes and suggestions (right from this forum!!) so we can give the Dr. an accurate background, and hopefully, will come home with a realy diagnosis after careful consideration of everything I have to say.

     

    I'll let you all know how it goes.

     

    Thank you!

    Laurie

     

     

     

     

     

     

     

    Hi- I usually post on the PANDAS forum (have dd6 and possible ds2 with PANDAS) but was on here to post a question and saw your post. I just wanted to say that you said you saw no OCD in your son but in our experience, licking stuff has been OCD driven. My dd licked stuff when in an exacerbation. Kids with PANDAS also get a lot of Sensory Integration Disorder (SID) issues.

     

    Not saying your son has PANDAS but I would certainly take a serious look at it. If it were me, I would post your info over on the PANDAS forum if you haven't already and have a look at the FAQ and other useful threads "pinned" at the top of the forum.

     

    There is also a thread on OCD behaviours that you may not realise are OCD behaviours. OCD manifests in some unusual and unexpected ways... good luck :-)

  7. Thanks Colleen. If a strep test comes back positive, does that mean that, for sure, that is what's causing the behavioral change? Could it be possible that he's had strep for over a year...because he's been acting this way for a while. Would simple medications/antibiotics get rid of this, or once you have PANDAS, you have it for life?

     

    I will check out the PANDAS site, too, thanks!

     

    Mom04,

    I just wanted to add that something you could look into, completely benign, is just getting a throat culture to begin with. When a young child begins to show any signs of tics, OCD, anxiety, aggressiveness (etc..there are so many different symptoms) you could possibly be dealing with PANDAS. At this time of year, there is so much strep going around, he may have been exposed to strep. I am not in any way saying your child has PANDAS, but what you have described in your son is exactly how PANDASA began with my daughter at that same age. There is a wealth of info on this site (PANDAS forum) about PANDAS.

     

    A lot of times when a physician hears that a child has tics, they immediately think Tourette's and begin with neurology appointments, psychiatric evaluations, psychiatric medications, etc... and miss the fact that it is actually PANDAS caused by strep. That is why is can be extremely helpful to just ask your pediatrician to do a strep culture, regardless of the absence of any physical symptoms of strep, b/c many children do not get any physical symptoms when they have strep (my 4 childrten included in this category). I know whn they have strep based on their behaviors b/c they get no physical symptoms.

     

    Colleen

  8. Thank you, thank you! The more information I gather....the more I'll have to get him a proper diagnosis. His Neurological appt is in April (boo!), but the DR first suggested a psychiatric screening. Just doesn't seem to fit with our family history, so I will definitely be reading up more on other causes.

     

    As for Lyme....is it possible he got it without the initial signs, like high fever, aches and pains and the rash? Because I don't remember him ever showing these symptoms. I will definitely have him tested for strep, too - I only remember him having this once in his short life, but maybe the antibodies are still present.

  9. Thank you, Kengela - yes, he has been acting this way for well over a year...maybe even longer...with the exception of new thinkgs like the spitting and licking. It seems to be getting worse and more frequent, but I think that is because he just started school this year and the daily excitement and/or anxiety is probably prompting this.

     

    I can't remember when this started....it seems like he's been this way forever, and like you said, we just thought it was his personality. He doesn't get sick often, but I can remember the last time he had a very high fever, they gave him a strong shot (not sure what it was) because he doesn't take medicine. Thing that could have something to do with it?

     

    Also...and ths is very shocking....I just read on here that Lyme disease can cause tics???? He doesn't have it, as far as I know, but I think that may be worth getting tested because his dad had a BAD bout this summer and was actually out of work for a while. We think he got bit in our yard.

     

    Thanks again for your words.

     

    hi Mom04 welcome Im pretty new here myself so cetainly no expert,but I can certainly empathize its very scary to see your child going through these things. My daughter is also 5,her major onset began the day of her 5th birthday. I know the first couple docs we saw were way off on any diagnonsis and even with one of tic disorder and add-pediatric neuro said seems like ts but hed have to see symptoms for a year,he obviously didnt read her records. Anyway my point is youll learn alot on this forum that may lessen the faith of any diagnosis you may get--including the potential for improving his condition without meds. I feel alot better just knowing that there is so much help and just general understanding available here. So do you think your soon has shown any symptoms in the past? I know once I started reading more I began to realize so many things I just thought of as "Quirky" were tics. Does he have any sensory issues-seams or tags in clothing drive him nuts? Did he have vaccines right before onset? well I dont know if ive helped any, if not Im sure someone here will soon. Good luck.
  10. Hi all - I am still waiting for an appointment for my 5 year old son to determine what sydrome, if any he has. His school is concerned that he is showing signs of Tourette's. The only knowledge I have of Tourette's is my own research on-line for the past 2 weeks. Although it seems obvious that he has certain vocal and motor tics, I'm just not convinced yet that they stem from Tourette's (the main reason being there is not one person in my immediate family, or family history with any neurological disorder).

     

    I am not asking for a diagnosis - obviously I'll wait for the professionals. However, I was wondering if anyone might offer their opinion about the following tics that he displays:

     

    fake belching

    clearing throat - but only when excited, so to me it seems appropriate?

    spitting

    licking things (that shouldn't be licked, like signs, windows, etc)

    gulping loudly when drinking

    throwing any object he gets his hands on (toys, pencils, blankets, pillows)

    Hitting without being provoked

    using inappropriate phrase in school and at home - these phrase always include the word "butt", like "your butt smells"

    jumping up and down when excited and pounds chest

    getting on all fours, and "bucking" back one leg like a donkey almost

    loud screams out of nowhere....usually right up in someone's ear

    making silly faces - sticking tongue out, smooshing face with hands, sticking fingers in mouth and streching his cheeks out

     

    Besides the physical tics, I am also concerned with his extreme sensitivity - cries and yells the minute parents try to talk about what's "going on" or give him rules; cries during any transition....not just coming and going transition, but like telling him he has to brush his teeth, for instance, before bed.

    slamming doors

    interrupting conversations and getting exasperated if you don't respond to him immediately.

     

    Thank you so much if you respond - my husband and I are just so distraught right now and want to help him in any way we can. It's tough right now not knowing and we feel like we are in limbo and aren't sure how to react (or not react) - waiting for our appointment feels like FOREVER!

     

    Thanks again in advance for your opinion/advice.

  11. How does this control tics and why? Should I give my son (who hasn't been officially diagnosed yet) a bath in it, or is there some other way of using it?

     

    I'm so scared because my son refuses to take medicine in ANY form....liquid, chewables, dissolvables....takes a fit NO MATTER what flavor or method. I'm just hoping if he has to go on meds for the tics that there's a patch of some kind out there. But I was also just reading in this forum that magnesium helps?? Most of my son's tics are verbal, so how would this help?

     

    Thank you all!!

     

    Laurie

  12. Hi everyone - just joined the forum today. I have been searching and searching for forums and help on-line for about 2 weeks. We suspect that my 5 year old may have Tourette's, but I'm so confused. Please forgive the LONG post, but I've been dying to get this off my chest and get some feed back from others. Here's a little background:

     

    My only son just started Kindergarten in Sept. Prior to Kindergarten, he just went 2 days a week to a in-home daycare, so this is his first time in an actual "school" system. The first week was tough....he cried everyday and every night. It was heart-wrenching to put him on the bus while crying, but I had to be strong so he'd get used to it....he has always had a tough time with transition.

     

    Anyhow, after only a week, he looked forward to going to school and he got a great progress report the first month, with the exception of "sometimes we have to re-focus him because he tends to wander off". Then about a month later, the teacher called and said that she's concerned with his "attention" (or lack of). She said he is very smart, and never mis-behaves, but is constantly moving. They have an OT in school who suspected (after seeing him a couple of times) Social Integration Disorder.

     

    I did some research on SID, and although there were some things I could relate to....like he hates water in his face, moves constantly, can't stand in lines, scared to death of all animals, etc.....most things didn't seem to fit. Just as I was saying this to myself, the OT called and said he doesn't "present" for Social Integration...but he is showing signs of tics.

     

    She asked me if he throws things at home. ALL THE TIME!!! She asked me if he uses the word "butt" at home. ALL THE TIME!!! Etc., etc. So, we made an appt with a pediatric neurologist but couldn't get in until next April. I'm devastated because the tics seems to be getting worse and I'm not sure what I'm supposed to do (discipline, not discipline, etc) in the meantime.

     

    LONG story Longer....Just wondering if you all think these are signs of Tourette's. Strange thing is, neither my family nor my husband's has any history of any disorder:

     

    screams real quickly for no apparent reason

    says "fresh" words constantly (not just every now and then), like "drag my butt on the ground", your butt smells, booby

    throws things all the time....toys, blanket, food, pencils in school, knocks things over

    fake belching

    clearing of throat when he is physically excited (like when he plays the drums)

    spitting on occasion, although I haven't seen this myself.

    Licking things...like shoes, signs, windows

     

    I just don't know what to do and waiting 2 months for the doctor is killing me. My sweet, smart, musically gifted boy, is having trouble daily in school and it seems to be getting worse. I'm thinking maybe because he's stimulated so much at school.

     

    THANK YOU SO MUCH IF YOU READ THIS FAR!! I've had my melt downs and crying and now I'm ready to just get him help.

     

    Laurie

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