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simplygina

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Posts posted by simplygina

  1. My husband has always been extremely sensitive to sound and smell. Turns out his mom is too. He hates things that I've never thought twice about, like people eating popcorn at the movies or the sound of a soda can being opened or the sound of typing. He also can smell something from a mile away but he can't seem to identify it. Sometimes it drives me crazy when I've spent an hour making dinner and he walks in and wrinkles his nose and say "WHAT is that SMELL?!"

     

    No surprise my son started showing signs at about 3. Hated toilets flushing, fireworks, tractors, etc. We took him to Disneyland at about 4 and he thought it was pure ######! That was about the same time he started to show anxiety all around. I asked him at about 5 if I'd ever made him do anything scary before and he yelled, "YOU MADE ME GO TO DISNEYLAND!!!" I actually burst out laughing. We went to Disneyland this past Christmas and he loved it, though the first day he way a bit overwhelmed and snappy. His tics were just about the worst I've seen them as well. Total sensory overload.

     

    He's 10 now the sounds are far less bothersome than the smells. I keep trying to teach him that there are less offensive ways to inquire about a smell than to go about it the same way his father does. He's getting better.

     

    I do think that sensory integration seems to be a big issue for these kids. He's never been very good at noticing that he's hungry, or thirsty, or that he need to use the bathroom, or that he's hot (he's never cold). He just gets grumpy and tense and when I ask him if he needs something, then he can usually figure it out. For the longest time I just treated him like you do an infant. Grumpy? Try feeding him, have him go the bathroom, see if he needs a nap or if he needs to disrobe a bit. At least now he can figure it out most times by himself after a prompt. Thankfully touch has never been much of an issue. He does have food texture issues though.

  2. I understand completely how emotional it is!

     

    I emailed Dr. K last week to give me some direction about what to tell our doctor for our appointment yesterday. After reading our history he said that he was pretty willing to bet that it is PANDAS. When I read that I surprised myself by starting to bawl. We've been dealing with this for over 2 years and I thought I had gotten past the emotional part of it. I guess I was just stuffing it down because I sat in front of my computer and sobbed with relief and mourning for the past few years and hope and so much more!

     

    Good luck and Thank God for doctors who are so willing to help us find the answers!

  3. I have some questions for those of you that have gone the antibiotic route.

     

    A little history on my son. He's 10 and weighs 78 lbs. I noticed his OCD symptoms during the summer of 2007. They were much worse by December and he was diagnosed formally in February 2008. We've done several rounds of therapy, usually during the school year because his symptoms seem to let up considerably by Summer (less exposure to strep I'm thinking). From 2006 to 2008 he had strep many times. In late November 2008 we finally had his tonsils taken out. Prior to the operation we realized he had a sinus infection and strep again so he went on antibiotics pre-op. I can't remember what they were (not amox). Then a 2 week course post-op of amoxicillan. We then had the best Christmas season we've had since he was 5. We never dreamed it was the antibiotics. In February his symptoms were back full force and we put him on Zoloft. Usually by March his symptoms are better again (end of strep season?) but we thought it might be the Zoloft. By summer he was much better again. When school started his symptoms came roaring back and added a whole slew of tics. His placement tests were awful. Usually he places in the high language arts and high math groups and his teachers are amazed at how bright he is. This year he was placed in low math and middle language arts. His handwriting was so horrid on his tests that the principal showed me to prove he was where he belonged and I had to admit that it was really awful. Looking back I now realize that his brother and several of his friends were diagnosed with strep that same week. Instead I had him tested for a learning disorder. The testing happened about a month later and the occupational therapist said his handwriting was OK. By then it was better. I assumed it was getting back into practice after summer. Because his tics had gotten worse I purchased the Bontech supplements. In October I had a throat culture done and it came back negative. His doctor wanted to bump his Zoloft up to 150 mg. I was questioning whether it was even doing anything at that point. Within 2 days my son was totally manic and could hardly sit still. I knew it was the medication and we began to wean him off entirely. He finished his last pill last week and we have noticed zero difference except he gained 15 pounds in a year. We started a new therapist in December 2009 who suggest Inositol and SamE. He has been taking 18g of Inositol since then and his disturbing thoughts have completely vanished (afraid he might kill the cat he loves so much, afraid he might kill his little brother and spend the rest of his life in prison, afraid that he wants to rape me...fun stuff). So at this point he is taking a whole regimen of supplements and I'm a little over zealous about high fructose corn syrup, caffeine, MSG and Red #40. He has been taking 15 Bontech caps, oregano oil, 200 mg SamE, zinc, chroumium picolinate, inositol, 1000 mg fish oil, flax oil, vitamin C, vitamin D and 3 mg of melatonin. I had entertained the PANDAS possibility since it all began, but until reading Saving Sammy I didn't really understand how it worked and I didn't think they treated it any differently than regular OCD and TS so I didn't pursue it. After reading the book I went back and looked through journals and medical records and wrote it all out and realized that it probably is. His doctor doesn't know enough to make a formal diagnosis, so we are treating it "as if" to see what happens. I'm confident that the antibiotics will help.

     

    I must admit that his symptoms have never been incapacitating. He is definitely on the milder end of the spectrum compared to so many other kids I've heard and read about. He is functioning and he is happy. As long as he doesn't have the dark thoughts, at this point he doesn't really mind the other stuff too much. His friends and school mates have been very accepting but with Jr. High looming, I worry it won't stay that way. Also, he is starting to go through puberty and I'm worried that the hormonal changes with make things worse. And his neck tics do make him sore after a few bad days. I worry about long term damage.

     

    OK so here are my questions:

     

    He is taking a 10 day course of Augmentin. The doctor prescribed 875 mg twice a day. So 1600mg roughly a day. That seems about right to me after reading Saving Sammy. His doctor couldn't seem to find an XR version at that dose. I asked for the XR version mainly because I thought I read somewhere that it seems to be easier on the stomach. Is that true?

     

    Those who have done antibiotics, have you kept up with the usual supplements as well? Many of the supplements already can cause stomach upset or loose stools so I'm wary to add them to Augmentin.

     

    Did your child have stomach problems? When my son was a toddler he had TONS of ear infections and ended up with a nasty yeast infection from one of the antibiotics. I've added a Culturelle between doses. Is that enough? Should he be eating yogurt or drinking kefir as well?

     

    Is 10 days long enough to see a difference? I've read that it can take months, especially the longer the child has had it. He's had it at least 4 years, maybe longer. His doctor was concerned about the idea of prophylactic antibiotic use, which is understandable. He did mention that the NIMH doesn't recommend them, but didn't rule them out. I watched a presentation by Dr. Swedo last night where she mentioned that they were very effective. If I don't see a big difference in 10 days, I'm worried his doctor won't agree to keep going. Any advice?

     

    If the antibiotics are effective, have you stayed with the supplements and/or restricted diet? Obviously some of the supplements I would keep, like fish oil and Vitamin D regardless. I'm just wondering when to stop the inositol at such high doses. And while I know artificial food stuffs aren't good for anyone, it would be nice not to worry about birthday parties and holidays so much. His tics are soooo much worse if he's had red dye.

     

    I guess I'm still trying to piece it all together because his doctor fully admits that I know more about it than he does at this point so he is relying on me to bring both scientific evidence as well as anecdotal information to him in two weeks. I'm keeping a detailed journal as well. We should have his tests back today and then I guess I'll have a better picture of what is going. on.

     

    Any information you all can provide would be greatly appreciated!

  4. Thanks Vicki. I didn't think of the toothbrush!

     

    We did have a throat culture done earlier this week. It came back negative. I had my other son and myself tested as well. Both negative. I didn't expect it to be positive because he isn't in one of his bad periods, just his normal everyday tics and OCD.

     

    We went to the doctor today because I finished reading Saving Sammy and wanted to talk to his doctor about it. He's had OCD/TS for 2 years now and the only time he has been totally asymptomatic was during the holidays in 2009 immediately following his tonsillectomy and a round of antibiotics both before and after his operation. By February he was as bad as ever and we started him on Zoloft to see if it helped (not so much). After reviewing my journals I realized that things ease up quite a bit during the summer and then get worse as he heads back to school. This school year his brother had strep within a week and I noticed my PANDAS son's symptoms were the worst ever. Within a month he was back to not so bad. His doctor did a throat culture in October (when he was already much better) and it was negative. I don't think he's catching the strep now that his tonsils are out. I just think his antibodies go nuts around others with strep. I emailed Dr. K to see what he thought and he agreed that PANDAS was likely.

     

    Fast forward to this afternoon. His doctor was very open and more than willing to admit that parents these days are more knowledgeable about this stuff because they have the resources and motivation to research things themselves. He did some quick research himself, told me that long-term antibiotic use wasn't recommended by the NIMH, which I told him I knew. I explained that several doctors are seeing success though and that I want to see what a round would do. He had his blood drawn for the tests and gave us a 10 day round of Augmentin 875mg 2x day. He said he couldn't find an XR version at that dose. We'll meet back in two weeks to discuss the results of the tests as well as what I record in my journal.

     

    I recall hearing that the XR version is easier on the stomach. Is that correct? I plan to have him take it with food and milk and take a Culturelle right after school. Is that enough, or are we in for a round of stomach problems? His doctor felt better about the Augmentin than he did Zithromax.

     

    I'm hoping to see a difference quickly to confirm what I think I'm seeing.

     

    I'm so glad his doctor is willing to entertain the idea that this might work! He even said he was excited to see what he could learn. I hope he continues to be so open!

  5. We are headed to our doctor this afternoon. After reading Saving Sammy I am determined to have his doctor run a blood test and give him a round of antibiotics to see if it has any effect. I emailed Dr. K with our case history and he felt pretty sure it is PANDAS. Now I just have to convince his doctor.

     

    I've been sure he's had PANDAS since he started showing symptoms but neither his doctor or I knew much about it. In His symptoms have waxed and waned. I noticed in September everything was much worse when his brother had strep but I didn't have him tested. I mentioned this to our doctor in October, when his symptoms had already gotten much better. No surprise his throat culture came back negative. Looking back I realize that the only time he has been completely asymptomatic was while he was on antibiotics after he had his tonsils out a year ago. We thought it was just the tonsil removal. The symptoms came back again within a month.

     

    Anyway, I'm so hopeful and nervous all at the same time.

     

    I'll let you all know how it turns out!

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