********* Posted September 9, 2010 Share Posted September 9, 2010 I've mentioned on here before that Zee has transient tic disorder. Well, his tics have gotten much worse lately. Right now he has several different ones, and they're much more persistent than he's ever had. I don't know why, and it worries me. Also, he was recently diagnosed by our pediatric neurologist with migiraines. But he's also having other kinds of headaches that we can't figure out a reason or treatment for yet. I've been praying about it a lot lately. I really feel like we need to get him an MRI. I've emailed his pediatrician, but she's reluctant to order one for him because he'd need general anesthesia for it, and she's just not convinced yet that he needs one. I'm not thrilled about the anesthesia, but I'm quite sure that I want him to have an MRI. I'm just very worried and scared. There's something wrong with my little boy, and I don't know what. And I don't know how to figure OUT what. Anyone btdt, or have any suggestions what I could do to get him some help? I think if the ped. won't order the MRI, we'll go back to the ped. neuro. for a follow up. Something just isn't right. Quote Link to comment Share on other sites More sharing options...
ccmom Posted September 9, 2010 Share Posted September 9, 2010 Is there another good pediatrician or specialist who can order the MRI? I'll keep your little boy in my prayers. :grouphug: Quote Link to comment Share on other sites More sharing options...
BeckyFL Posted September 9, 2010 Share Posted September 9, 2010 No suggestions but prayers for wisdom and healing! :grouphug: Quote Link to comment Share on other sites More sharing options...
********* Posted September 9, 2010 Author Share Posted September 9, 2010 (edited) The pediatrician just emailed me back and said she would like us to go see the pediatric neurologist again. I'm in tears here. I don't quite know how to explain it, but I really feel a sense of urgency in getting this figured out. I know it could just be my overactive mommy protection instincts. But I've never felt this worried about any of my kids before. I can't explain it. Even Moose with his sometimes extreme and frustrating SPD episodes don't shake me like this. Edited September 9, 2010 by bethanyniez Quote Link to comment Share on other sites More sharing options...
Lucy in Australia Posted September 9, 2010 Share Posted September 9, 2010 Prayers and :grouphug: Quote Link to comment Share on other sites More sharing options...
Starr Posted September 9, 2010 Share Posted September 9, 2010 I'm praying for you to feel God's protection and calmness. Step one is done. You are now going to the neurologist. Couldn't they just give him la la land meds instead of general anesthesia for the MRI? I'm praying it gets worked out soon. Quote Link to comment Share on other sites More sharing options...
********* Posted September 9, 2010 Author Share Posted September 9, 2010 The neurologist was able to get us in tomorrow morning. I have no idea how that happened; we had to wait several weeks for our appointment last time. But thank the Lord; I can't go on worrying like this much longer. Please pray that our fantastic ped. neuro. will help us get some answers. Quote Link to comment Share on other sites More sharing options...
specialmama Posted September 9, 2010 Share Posted September 9, 2010 :grouphug: Bethany, I was that kid. I stated having nasty migraines at the age of 7. I had an MRI, CT scan, and was hospitalized for 3 weeks. They thought I had a brain tumor. Turns out I was sensitive (and reacting to) sugar, artificial sweeteners, food additives and dyes. I'm not saying to ignore those warning bells going off in your head... but don't think the worst either. You're a Christian, right? Then just take a minute and re-connect with Him. Worry and fear do not come from Him. Plus, if Zee senses anything askew, he's likely to tic more. Praying for you, Zee, and the doctors to have wisdom. Praying for you to experience peace on this boat right now, because Someone controls the storm. One foot in front of the other. Just deal with today, hon. :grouphug: Quote Link to comment Share on other sites More sharing options...
********* Posted September 9, 2010 Author Share Posted September 9, 2010 :grouphug: Bethany, I was that kid. I stated having nasty migraines at the age of 7. I had an MRI, CT scan, and was hospitalized for 3 weeks. They thought I had a brain tumor. Turns out I was sensitive (and reacting to) sugar, artificial sweeteners, food additives and dyes. I'm not saying to ignore those warning bells going off in your head... but don't think the worst either. You're a Christian, right? Then just take a minute and re-connect with Him. Worry and fear do not come from Him. Plus, if Zee senses anything askew, he's likely to tic more. Praying for you, Zee, and the doctors to have wisdom. Praying for you to experience peace on this boat right now, because Someone controls the storm. One foot in front of the other. Just deal with today, hon. :grouphug: Thanks so much for the encouraging words, Karyn. I'm trying not to seem alarmed in front of Zee. But I'm worried about how to discuss this with the doctor tomorrow without alarming him. I've never done this before, but perhaps I'll ask her to step outside the room with me so that he doesn't hear. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted September 9, 2010 Share Posted September 9, 2010 :grouphug:Hugs and prayers:grouphug: The neurologist was able to get us in tomorrow morning. I have no idea how that happened; we had to wait several weeks for our appointment last time. But thank the Lord; I can't go on worrying like this much longer. Please pray that our fantastic ped. neuro. will help us get some answers. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted September 9, 2010 Share Posted September 9, 2010 Thanks so much for the encouraging words, Karyn. I'm trying not to seem alarmed in front of Zee. But I'm worried about how to discuss this with the doctor tomorrow without alarming him. I've never done this before, but perhaps I'll ask her to step outside the room with me so that he doesn't hear. My ped has had the nurse take the boys on a walk in the halls; I've also taken in written notes that begin with "I don't want to alarm/worry ds, but..." and then I list my concerns. :grouphug: Quote Link to comment Share on other sites More sharing options...
cin Posted September 9, 2010 Share Posted September 9, 2010 DH has had migraines since he was a child. He has MANY food sensitivities. MSG being the worst. That being said, I'd definitely trust my gut. Our pediatrician listens to moms. And if I said something's just not right, he'd hustle me right down to the hospital/clinic/whatever to get what was needed. Praying for you and Zee! Quote Link to comment Share on other sites More sharing options...
Julie in CA Posted September 9, 2010 Share Posted September 9, 2010 Thanks so much for the encouraging words, Karyn. I'm trying not to seem alarmed in front of Zee. But I'm worried about how to discuss this with the doctor tomorrow without alarming him. I've never done this before, but perhaps I'll ask her to step outside the room with me so that he doesn't hear. I've had to do this several times recently. Make sure you tell the nurse that you'd like to discuss some things privately with the doc. In my case, I also brought along one of the older kids, just in case it turned out that they were needed to sit with the kid while I consulted with the doctor. In the end, the nurse waited with my dd in the exam room while the doc and I went to his office. It will be ok. It will work out. :grouphug: Quote Link to comment Share on other sites More sharing options...
Sparkle Posted September 9, 2010 Share Posted September 9, 2010 :grouphug: Praying for you and hoping you get some answers soon. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted September 10, 2010 Share Posted September 10, 2010 Please update us when you can today. I'll be praying for you guys :grouphug:. Quote Link to comment Share on other sites More sharing options...
MamaAkins Posted September 10, 2010 Share Posted September 10, 2010 Praying for peace for you, healing for your son, and wisdom for the doctors. Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted September 10, 2010 Share Posted September 10, 2010 Bethany - I'm keeping you in my prayers today. Quote Link to comment Share on other sites More sharing options...
********* Posted September 10, 2010 Author Share Posted September 10, 2010 Oh ladies, thank you for the prayers! The neurologist ordered an MRI. She was very much in agreement that he needed one. She works at a large neurological facility, and they do them there. He will not need general anesthesia, just an oral sedative, so that's good. I'm so relieved! She also gave me a wonderful referral for a program at U of M that will help Zee with his tics, without medication. It's a kind of new cognitive and behavior therapy. Dh and I are very excited about the prospect. So, many blessings from the Lord for us today! His MRI is on the 22nd, and then I have to wait a week (!) to call and discuss the results with the doctor. Just leaning on the One who created my little guy's body today, that He will direct us and keep us. God is so good! Quote Link to comment Share on other sites More sharing options...
JudoMom Posted September 10, 2010 Share Posted September 10, 2010 Oh ladies, thank you for the prayers! The neurologist ordered an MRI. She was very much in agreement that he needed one. She works at a large neurological facility, and they do them there. He will not need general anesthesia, just an oral sedative, so that's good. I'm so relieved! She also gave me a wonderful referral for a program at U of M that will help Zee with his tics, without medication. It's a kind of new cognitive and behavior therapy. Dh and I are very excited about the prospect. So, many blessings from the Lord for us today! His MRI is on the 22nd, and then I have to wait a week (!) to call and discuss the results with the doctor. Just leaning on the One who created my little guy's body today, that He will direct us and keep us. God is so good! Thanks for the update, and know that I'll be praying :grouphug:. Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted September 10, 2010 Share Posted September 10, 2010 That's encouraging news. The wait sounds ilke it'll be hard. I'll keep praying for you!!! Quote Link to comment Share on other sites More sharing options...
ChristusG Posted September 10, 2010 Share Posted September 10, 2010 Praying for you and Zee! Please keep us updated about the MRI. Is your son under and stress lately? Any big changes? Any you may not even realize that is stressing him? Is anything worrying him? As I'm sure you already know, tics get worse under stress. I have a tic disorder (not Tourette's....I've never been diagnosed but I'm leaning towards chronic motor/vocal tic disorder.....just like transient tic disorder but extends into adulthood). I know that my tics get worse at times, especailly when under a lot of long term stress, or when I'm worried. But then again, there are times when they get worse for no reason at all. I'm praying for your son. I'm glad you are trusting your mama instince....God gave it to us for a reason. Quote Link to comment Share on other sites More sharing options...
********* Posted September 10, 2010 Author Share Posted September 10, 2010 Praying for you and Zee! Please keep us updated about the MRI. Is your son under and stress lately? Any big changes? Any you may not even realize that is stressing him? Is anything worrying him? As I'm sure you already know, tics get worse under stress. I have a tic disorder (not Tourette's....I've never been diagnosed but I'm leaning towards chronic motor/vocal tic disorder.....just like transient tic disorder but extends into adulthood). I know that my tics get worse at times, especailly when under a lot of long term stress, or when I'm worried. But then again, there are times when they get worse for no reason at all. I'm praying for your son. I'm glad you are trusting your mama instince....God gave it to us for a reason. I really racked my brain about any big changes that might be stressing him, and can only think of that we've told him we are probably moving next year. But he doesn't seem worried about that. I think it's just and ebb and flow sort of thing. Also, I sat down with him and asked him to explain the tics he has to me, and he got the idea for them from a video game (they are all breathing tics, and he played Kirby for the first time recently, and the character does a lot of breathing/sucking things). Of course we got rid of the video game, but he still has the tics. Now, I'm not BLAMING his tics on the video game; he can get an 'idea' for a tic anywhere. But I found it interesting. Quote Link to comment Share on other sites More sharing options...
1bassoon Posted September 10, 2010 Share Posted September 10, 2010 Great news, Bethany - I've been following and praying. Keep us updated!:grouphug: Quote Link to comment Share on other sites More sharing options...
unsinkable Posted September 10, 2010 Share Posted September 10, 2010 Oh ladies, thank you for the prayers! The neurologist ordered an MRI. She was very much in agreement that he needed one. She works at a large neurological facility, and they do them there. He will not need general anesthesia, just an oral sedative, so that's good. I'm so relieved! She also gave me a wonderful referral for a program at U of M that will help Zee with his tics, without medication. It's a kind of new cognitive and behavior therapy. Dh and I are very excited about the prospect. So, many blessings from the Lord for us today! His MRI is on the 22nd, and then I have to wait a week (!) to call and discuss the results with the doctor. Just leaning on the One who created my little guy's body today, that He will direct us and keep us. God is so good! You have my prayers! Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted September 10, 2010 Share Posted September 10, 2010 I've been through a lot with tests for dd10; multiple MRI's, EEG's, among other things. I have been through a severe torture session as I was told dd had an abnormal brain (Boston Children's confirmed that she didn't) seizures (apparently not) etc. Her symptoms were at their worst at around age 7/8 and then they started to get a lot better. What do you mean by "other types of headaches?" Dd also has migraines. She also has a pineal cyst on her brain stem. This TERRIFIED me for years and I was SO uncomfortable about it all. I know it's a common finding but it still bothers me. If your son is going through a growth spurt, it can trigger an exasperation in his symptoms. Also, keep a record of his headaches and his migraines, along with his food and WATER consumption. My dd was getting migraines from not drinking enough. She rarely gets them now but when she does, likely she's not well hydrated. When you get your results from the MRI, please post them here. I hope to see your post. Like I said, I've learned a lot in my process with dd. BTW, I'm surprised you have to wait so long for your results. We typically got ours before we left the facility or the next day.:confused: Quote Link to comment Share on other sites More sharing options...
MommyOwl Posted September 10, 2010 Share Posted September 10, 2010 I really racked my brain about any big changes that might be stressing him, and can only think of that we've told him we are probably moving next year. But he doesn't seem worried about that. I think it's just and ebb and flow sort of thing. Also, I sat down with him and asked him to explain the tics he has to me, and he got the idea for them from a video game (they are all breathing tics, and he played Kirby for the first time recently, and the character does a lot of breathing/sucking things). Of course we got rid of the video game, but he still has the tics. Now, I'm not BLAMING his tics on the video game; he can get an 'idea' for a tic anywhere. But I found it interesting. Both my boys start "ticking" after they play a lot of video games. We don't eliminate them, just cut back a bit if the tics start. And both had a significant increase in tics when their reading skills jumped from simple words to complex words. Weird, unh? My prayers are with you and your family as you try to find a solution to the headaches and tics. Quote Link to comment Share on other sites More sharing options...
Lolly Posted September 10, 2010 Share Posted September 10, 2010 I really racked my brain about any big changes that might be stressing him, and can only think of that we've told him we are probably moving next year. But he doesn't seem worried about that. I think it's just and ebb and flow sort of thing. Also, I sat down with him and asked him to explain the tics he has to me, and he got the idea for them from a video game (they are all breathing tics, and he played Kirby for the first time recently, and the character does a lot of breathing/sucking things). Of course we got rid of the video game, but he still has the tics. Now, I'm not BLAMING his tics on the video game; he can get an 'idea' for a tic anywhere. But I found it interesting. My ds does have an increase in tics with increased screen exposure (especially games). We have also found that allergy/cold medicines trigger his. So glad you are finding some help. Quote Link to comment Share on other sites More sharing options...
miracleone Posted May 27, 2011 Share Posted May 27, 2011 I've mentioned on here before that Zee has transient tic disorder. Well, his tics have gotten much worse lately. Right now he has several different ones, and they're much more persistent than he's ever had. I don't know why, and it worries me. Also, he was recently diagnosed by our pediatric neurologist with migiraines. But he's also having other kinds of headaches that we can't figure out a reason or treatment for yet. I've been praying about it a lot lately. I really feel like we need to get him an MRI. I've emailed his pediatrician, but she's reluctant to order one for him because he'd need general anesthesia for it, and she's just not convinced yet that he needs one. I'm not thrilled about the anesthesia, but I'm quite sure that I want him to have an MRI. I'm just very worried and scared. There's something wrong with my little boy, and I don't know what. And I don't know how to figure OUT what. Anyone btdt, or have any suggestions what I could do to get him some help? I think if the ped. won't order the MRI, we'll go back to the ped. neuro. for a follow up. Something just isn't right. Hi, I was just doing a search on tics and came across this thread. I am curious to know what happened to the MRI and the result? My dd8 is having lots of tics lately. She started having them when she was 4.5 years old. It hurts to see her nodding her head or having head jerk, giggling sound and she said she cannot control them. Today she said her head hurts because it was shaking a lot. I have requested for a referral to a neurologist from the pediatrician. I really do not want her to get medication but just some behavioral therapy to help decrease the tics. These tics change from time to time from blinking to twitching, to others and now it's her nodding. My heart is so broken because it hurts to watch my daughter going through it. Any suggestions or comments appreciated. Thank you. Quote Link to comment Share on other sites More sharing options...
Lolly Posted May 27, 2011 Share Posted May 27, 2011 Hi, I was just doing a search on tics and came across this thread. I am curious to know what happened to the MRI and the result? My dd8 is having lots of tics lately. She started having them when she was 4.5 years old. It hurts to see her nodding her head or having head jerk, giggling sound and she said she cannot control them. Today she said her head hurts because it was shaking a lot. I have requested for a referral to a neurologist from the pediatrician. I really do not want her to get medication but just some behavioral therapy to help decrease the tics. These tics change from time to time from blinking to twitching, to others and now it's her nodding. My heart is so broken because it hurts to watch my daughter going through it. Any suggestions or comments appreciated. Thank you. If she does not notice that the thread has been revived, you could pm her to ask. Quote Link to comment Share on other sites More sharing options...
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