kengela

Yesterday my dd6's teacher told me she thinks my dd has ADHD and wondered if Ive spoken to her DR re Medication, she just"wanted me to be aware of what shes seeing" DD was diagnosed with ADD and tic disorder which the schooland teacher were informed of more than once,including the medical record of dx and request the GFCF diet not be comprimised at school. I sure am glad they want ME to "be aware"! then at the end her suggestion of medication and comment of "oh so you know and choose to just let it go" she says maybe she should buckle down on dd because ONE time she completed a math paper in a timely fashion when she was told she couldnt go to do whatever the class was doing next so"she can do it if she really wants to" What the ****?So apparently this teacher thinks I should medicate a child who "can focus if she wants to"???? This after I showed her video of dd doing pretty severe arm, shoulder and head tics and explained that dd has many tics that she obviously suppresses at school and explained that adults with tics will tell you it takes alot of effort to suppress them. I also told her again of some of dd's other symptoms-irrational fears,social anxiety,sensory issues,etc...Then she pretty much called me a liar when I told her dds tactile sensory prob. is why it takes her so long to get all her winter gear(we live in Mich.)on by saying "No no she never says anything is bothering her she just pokes around and is just slow." & "No I dont see any social anxiety,she interacts with the other kids and teachers,so I dont think she has social anxiety. UHHHG!!This lady causes me anxiety!Whew, I guess Im done venting now. So today dd comes home with a note saying"Emerald stayed focused all day and completed all her work on time. Whatever you said to her really worked!" I didnt say anything to dd all I did was give her Cod Liver Oil(Nordic Naturals-Artic-D) in the morning instead of at night. So my ? is: Has anyone seen such a marked improvement in attention/ablity to focus with similar supplement? Also do you think giving in the AM rather than PM would make such a difference? Im so hoping that is the case and dd didnt "just have a good day" because now this teacher will really think she can do so well all the time now,she just doesnt get it.

Hi,I have never seen nosebleeds as a symptom associated with Pandas I would think it most likely to be from the punch,or at least something other than Pandas. Welcome to this forum, its full of good advice and info.Infact you can do a search for nosebleeds to see if anyone has brought it up before.Good luck.

S&S I know that probably every parent on here has been there and understands your frustraion. I hope you find that special Dr. soon!

Shes not on any antibiotics,she hasnt had any since before she was 2 just eardrops, she is allergic to amox, and had a "serum sickness" reaction to Omnicef. Thats a major worry to me is that she has something,like strep that has never been treated. Our current DAN dr. says hes willing to start antibiotics once all his supplements(multivit.,enzymes,fishoil,probiotics-we are alreadyGFCF) are well underway. But as I said before, Im not confident that hes very knowledgeable about Pandas/Pitand.At least he does know of it,and believes it exsists,which is more than I can say for the other Drs weve seen.

S&S--Yes,almost everytime I go to a "mainstream Dr." or the school with concerns about my daughter.But we must be vigilent, so that along the way us "crackpots" are able to open the eyes of at least some of those who can help our children.Just think if each of us only convinces say one doctor or one school personel,what a difference it could make for the children who come after ours!

So how do we know if the strep is gone?

I know the topic must have been discussed but I cant seem to find it. My dd6 has very low ASO the last time I had it done I actually wrote it on the lab order myself because the ordering doc ordered the week before but no second test to compare.I learned here that you need 2 about a week apart so when we went back a week later to finish up all the blood work I added the ASO titer. The first test was 6 the second 11.(Quest labs) I know the #s are very low but that is an increse right? I just think of it like this: if the number was 400 then 700 a week later it would be cause for concern,or mean something right?,so why not be concerned in a almost doubled # in our case? She has never been dx with strep (only tested once or twice) and because of allergies hasnt been on abx since before she was 2.I just wonder if I should get another set of titers done?I do have a local ENT who although seemed to never have heard of Pandas when I brought it up she did order ASO titer for me once and told me if I learned more and wanted her to order more tests she would,I wish I didnt have to be the DR so much! We are seeing a DAN doc, who if my child had autism I would be very happy to have him,but Im afraid that hes not as aware in this pandas/pitand area.Hes never even heard of Swedo or Cunningham is it just me or would anyone else take that to mean he probably hasnt researched the subject of pandas too much?Sorry for the lenghty post any info/experince re: low ASO would be appreciated. I have learned so much and am so grateful for this forum.

From my husband(who claims to be supportive) after I had a moment of feeling sorry for myself about the difficulties of GFCF,organic,and several food allergies as many of you know mealtime can be such a chore. He says "Well it was your choice to put her on such a diet" Yes it was my choice to do what I know is best for my child, I guess he thinks I should just make the choice thats easiest for me. And from our former pedi "Its not Tourettes because so-an -so's son has that and he barks" shes also the one who told me to"do myself a favor and stay off the internet because theres so much info out there that it can be confusing" after I tried to explain to her that my daughters verbal tic was not OCD my daughters own words:It feels all UHHH if I dont do it.--Clearly the tic being done to release a physical tension, not the mental releif of tension that say washing hands gives to a contamiation fear. I hope she does her future patients a favor and gets on the internet,although I guess she might be confused by all the information out there.

My dd 6 had major memory problems-forgetting words to songs and nursery rhymes that shed known for years,forgetting what things were called,ect... She also had the "what?" thing-way before her major onset. We had her ears checked I thought she was having trouble hearing. Until now I always thought back on that as a tic.My dd hasnt been dx with Pandas but now I have 2 more symptoms to make me believe thats what this is. Angela

When you see your childs teacher in the hall instead of a smile and polite "hello" you get: an eyeroll and an "UUGH" expression.I Know it shouldnt bother me by now but it does

UGH!!! Did you see the Facebook "Autism Quotient Test"?! Drove me INSANE! Gotta admit... I called out every single person who posted it. So stupid. You know you're a P.A.N.D.A.S. kids when your friends know better than to vent to you. "Ugh, & then Sally kissed Johnny & it was like, so messed up cos like I like Johnny & Sally isn't even cute like & like Sally knew that & like why would she do that to me? Oh my God. I am like... So depressed." ~ Friend. "I've been having a bad day too. The Babesia, Bartonella, Ehrlichia, Anaplasma, & Mycoplasma tests all came back normal the same day I had an allergic reaction to the MSLT glue." ~ Me. "Oh......." ~ Friend. (who probably has NO idea what I'm talking about anyway, haha.) You know you're a P.A.N.D.A.S. kids when your friends call you for all of their ailments. "Ailidh, my eye hurts." "Eat a mango. More vitamin D than a carrot." "Ailidh, my throat hurts." "Rice pudding." "Ailidh, I can't sleep." "Melatonin & Valerian root." They all call me Dr. Emerson. D:

UGH!!! Did you see the Facebook "Autism Quotient Test"?! Drove me INSANE! Gotta admit... I called out every single person who posted it. So stupid. You know you're a P.A.N.D.A.S. kids when your friends know better than to vent to you. "Ugh, & then Sally kissed Johnny & it was like, so messed up cos like I like Johnny & Sally isn't even cute like & like Sally knew that & like why would she do that to me? Oh my God. I am like... So depressed." ~ Friend. "I've been having a bad day too. The Babesia, Bartonella, Ehrlichia, Anaplasma, & Mycoplasma tests all came back normal the same day I had an allergic reaction to the MSLT glue." ~ Me. "Oh......." ~ Friend. (who probably has NO idea what I'm talking about anyway, haha.) You know you're a P.A.N.D.A.S. kids when your friends call you for all of their ailments. "Ailidh, my eye hurts." "Eat a mango. More vitamin D than a carrot." "Ailidh, my throat hurts." "Rice pudding." "Ailidh, I can't sleep." "Melatonin & Valerian root." They all call me Dr. Emerson. D:

Hello All, I think my dd(almost6) has strep,with sore throat so Im taking her to the ENT Dr. tomorrow.I just wanted to throw this ? out here because Id hate to find out at our upcoming 1rst appt. with a Dan dr.that I could have gotten some test done during this infection that could be helpful to getting her better,or even a clue to whats wrong.Were just coming up on 1 year that weve been dealing with all this and Im starting to really think were dealing with Pan/pitandas so I dont want to miss any "windows of opprotunitty". Thanks, Angela

hi, Well after much ado we finally received a message re dds challange urine test for metals.And of course I can only leave a message for them, to try to find out what this means. But I value the knowledge I gain here more than anything any doctors so far have told me. Hoping to find the right Doc soon, but in the meantime this forum is so helpful-even if it only lets me know Im not alone in my struggle to help my child.Thanks in advance for any insight on this matter. Angela

tmom, How nice of your vet,no eye rolling or suggestion that you shouldnt believe everything you read on the internet? he just used commonsense and treated the dog? Too bad hes not a people doctor!

Im almost scared to ask-because we have a dog who we love dearly. Ive read on this forum, of doctors asking new patients if they own a dog, so now im wondering why .I hope it isnt the dog infecting a person with something. Does anyone know? My dear dog and I await an answer. Angela

Hi Im usually on the TS forum but thought someone over here may know where I can find the most up to date list of dan drs? Ive heard of a good one in Milford but cant get his name.The lists that Ive found dont seem to be very current. Any info would be helpful thanks. Angela

Hi I just finished a book on this subject last night.Its The Sensory-Sensitive Child by Karen A. Smith, Ph.D &Karen R. Gouze, Ph.D. Its written by 2moms with sons with this,they both are therapists and professors of clinical psychology. I found the book very helpful,my dd 5yrs also has some sensory issues,Im anxious to get her to an OT now that Im hearing such good things about it and I do see the results of some of the things weve just done as coping stradagies.I think learning about this issue will give you a new percerption of many behavioral issues,and it seems just that alone can bring about some fast improvement in some of the daily struggles we all go through. And just incase you dont read the book heres a message from one of the writers sons, now 15--He wants parents to know it does get better.I could be wrong but I beleive he had 18 mo. of OT Angela

michelle, I was just wondering if some of the sexual behaviors could be side effects from one of his medications? Im sure Ive heard of sexual side effects from more than one similar medications,maybe someone with experience with his meds will post some comments. I will keep you in my prayers, it must be so hard having to worry not only for him but the thought of you being scared to leave him alone with your 3yr old just makes my heart ache for you. I hope you find some helpful advice soon, there sure seems to be alot of that here. I looked briefly at your profile,but not back too far I was wondering if youve tried any of the more natural therapies or diet changes talked about so much here? Angela

hi Just wanted to say hi and to let you know Im fairly new here but have found so much help here.I have never tried the medication route but have had huge improvements with diet changes-that keep changeing as I learn more, and see which things effect her most. I have recently started magneisium. Im interested to see your responses toFaiths ?s I know the more I learned the more things I realize were there since my daughter was an infant. Good luck Im sure youll find things here that will help just as much as medications, without the harmful and sometimes permanant side effects. Angela

I should start by saying I havent really been on the tsa site since I found this forum, and I didnt give them much of a chance. I did find the factual info and even some coping tips helpful but found their referal list extremely out of date. Also they seem to be very pro medication, I dont recall any talk of alternative therapies, is that just my bad memory? afterall it was at the begining of all this for me so I was a bit of an emotional wreck.Anyway with leles recent comments about tsa I just got to wondering about them and if Im just being my sometimes synical self? I thought maybe some more "in the know" would know if tsa gets funding from pharmacutical companies?

Angela, that is a good concern, I really wish I could communicate this well with my son, but I don't know how to do that without letting him feel nervous. It was my little boy told me there must be something wrong and need to see the doctor when he started jerking his neck and clearing throat last May. I was so panic and couldn’t control my mood after I did a web search and end up with the devil TS! We went to see the child neurologist and talked a lot about TS and tics in front of my son with the doctor, by that day I noticed his tics was really bad, he can't even stop jerking his neck, that day I decided to stop talking the TS in front of him. I know it was too late, he caught up every single piece of information from that neurologist and told his classmates he had tics once he was in school................We send email to his school teachers about his situation, so far no kids joking on him, maybe I am wrong, who knows. Even though we never talk about his situation, one day when he had really bad tics and his daddy asked him "do you know why it happened?", and he said "A neuron problem" I was shocked! I try to let him know it is just a minor problem, and mommy did it when I was a child (but I am not), it will be ok soon. I do know it won't work, but I don't know how to really help him on accept it. Even though I took him to the different kind of doctors I always find an excuse like cough, asthma, cold something to “cheat” him, I don’t let his daddy take him in the office until I talked with the doctor first. I know it sounds silly that I try to cover him that much. He is a gifted child with very excellent academic performance, looks like he is very happy in school and didn’t pay too much attention on the tics even when his tics are really bad recently. I am still struggling on how to talk this situation with him. Any suggestion will be helpful. . lele,how are you doing?I hope Im doing this right so you get this message. I also told my dd some little fibs about our first couple of visits to drs , but she knew something was wrong and Ithink she felt much better once I told her theres a name for what she has and that lots of other kids, and adults have it and that shes not going to die, and she was also concerned about her being able to give someone else ts from her germs. She has a baby brother and when he was born of course we stressed the importance of being careful withthe baby espcially his head,and I must have been telling her that if his brain got very hurt he could die, and when she went for a cat scan she was worried she could die, because she knew they were looking at her brain.My point is you neverknow what theyre thinking unless you ask them.I recently brought up her neck tic by saying has your neck been bothering you? Shetold me how it feels to have this new tic. I only brought it up to her because this is her first really noticable tic, until then most of hers have been comlex and easy to miss if you arent looking for them,anyway I could tell she was nervous about kids at school noticing,and she opened up about it and Itold her that other people dont usually even notice her tics like we do. I let her watchthat movie Front of the Class a couple of weeks ago and I think it was good for her. as we watched it together I asked her what she thought of this or that and she said he wouldnt be a very good teacher making all those funny noises,and she said what if she was the teacher,(one of her vocals is saying the word why) and she was saying"why" the kids would all be trying to answerher whys but I told her that just like his student got used to his noises , she could just tell them right away about ts and then they would know she didnt mean why. I think is was great for her to see him struggle and become what he wanted and do it so well. Well I hope you can spark up a little talk withyour ds soon. oh yeah, another thing I wanted to mention is that the day aftershe watched that movie I had a weak moment and let her have 2 peices of frozen pizza that my husband was eating and while she was ticcing away from the pizza she said to me "Its ok if Im doing my neck thing and saying my words over" and I realized that yes it is ok and my husband is right it probably bothers me most of all. I just never want her to be in pain emotional or physical. Of course we will continue to search for help for our kids but I think we need to be careful to not let them think that we feel they are so bad off. well keep me posted I think you will both feel alot better after a good talk. Good Luck.

Lele What do you mean you and your son never talk about ts? I know at the very begining of my 5yr dds onset she told me "I know something is wrong because I keep saying things over again and I dont know why. And my lips keep going over like this " I just wonder if you dont talk to him at all about his situation, theres no telling what he may think is wrong with him. Just a thought. I cant offer much help but will keep you in my prayers. angela

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.

hi tricia Im not 100% sure but I think it was on the paper from the health dept (michigan) that was sent home from school that actually said if you have an ongoing neurological condition you should discuss it with your dr before recieving the shot. I wanted to say it said not to get the shot but i doubt it would say that rather than "discuss wth dr". May I ask does TS or anything run in the family for your dd? It doesnt for my 5yr old dd. I think she has had reactions to shots in the past. We dont do them anymore.Anyway just thought Id pass along that info from that paper, it caught my attention because I thought the neuro we saw a few months ago should have mentioned it, I just think they dont want to admit any dangers of all these shots they want to give our children.