Jump to content
ACN Latitudes Forums

shelly76

Members
  • Content count

    20
  • Joined

  • Last visited

About shelly76

  • Rank
    Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. shelly76

    Bad tics

    Hi mlee, We've been to many but for PANDAS, we went to a naturopath in Seattle- Dr Gbedawo. She's very informative and caring, but if you don't have a great insurance or picky insurance like me, it's very expensive. I also went to a neurologist at Children's who gave my son a different diagnosis than Dr Gbedawo. He diagnosed him with Tourettes. Children's really works with you on payment-- super grateful. I understand your disappointments... been there and done that. Although I got some good info from both, I still feel like I'm on my own and back at square one. I can't afford the naturopath but I was happy to see some mineral deficiencies which can be treated. I would say if you have the funds, it's not a bad idea to see an alternative doctor and a neurologist to gather as much information as possible. But then again, too much info and too many diagnosis can be dangerous and upsetting. I would suggest finding a pediatrician that is PANDAS friendly if that's what you suspect... that way insurance is more willing to do some tests. Dr Gbedawo will do tons! But again, it's very pricey. I'm still making payments!!! Have you found anyone yet?
  2. shelly76

    Bad tics

    Hi Edsonr, Thanks for asking! My son had a really good July... the tics were minimal... always there but not too bad and not bothersome. Once August hit though, they exploded again out of nowhere! You tend to forget how terrible they can be when you get a break. I really can't pinpoint it to anything. He has had a bit more computer screen time since our summer babysitter uses that as a babysitter...it's infuriating, but she's the only help I have. It could also still be those pesky hormones. He's 100% going through puberty now. Hair everywhere, smelly armpits, acne, and moodier than ever!! He was such a sweet loving kid and now the hormones have turned him into a grump!! I still see enough of the sweetness, but man! What a challenge. I'm hoping the tics die off a bit before school starts in a few weeks. His newest one which is not new but a bit different, is a shaking jaw. He opens and closes his jaw in a three part succession... reminds me of a talking skeleton. 😃 I have to laugh or I'll cry. He has also begin again throwing his neck back and punching upward with his fist. I've noticed the full body shock-like tic again also. I'm super grateful they mellowed out for a month. It reminded me that they do wax and wane but it was such a long stretch last time-- like 6 months, that I forgot. But he's been worse, so I'll try not to complain more. 😃 How are you guys?
  3. shelly76

    Bad tics

    Hi Chemar, I have heard of this and have seen some amazing videos on it.... I will do some searching here too. I would be very interested in the cost and procedure. My son is a chewer and had a binky way too long. His dentist was concerned at his jaw development at one point and mentioned we might need to do some spacers or something in his mouth. It hasn't been discussed in a while, but this has me thinking.
  4. shelly76

    Bad tics

    Hi Mert, Thanks for responding. For a bit, my son would have phonic tics while eating-- usually the grunting or giggle sound, but that's passed like these odd tics do. Now they are most severe when he's lying down or sitting up and having to be still (like in a movie) or in bed. As long as he's free to move around on his yoga ball or walking, etc, the more disturbing tics aren't as visible. Obviously, this makes school tough. At the moment, he has about 5-8 different tics going on. I can't help but wonder if his under-bite has some sort of affect on these tics being that lying down exasperates the shock-like tic he has. The minute you think you might understand, they change. I'm still looking for a new multi-vitamin, but because he's so sensitive to everything, I'm not sure which direction to go.
  5. shelly76

    Bad tics

    Thank you! We will do another strep test since he's so bad. I'll let you know!
  6. shelly76

    Bad tics

    We did epsom salts last week too. There wasn't a negative reaction to those, just no reaction. So, I'm not sure if it was the magnesium or a flare. I tried it on myself also and didn't feel well. It's Kirkland brand... don't know... I don't react well to magnesium. Myoclonic tics, twitches, seizures... not exactly sure, but they seem to be in a category outside of TS. I just wish a doctor could help us. We have an appt tomorrow with his pediatrician, but I"m not sure she's going to be much help.
  7. shelly76

    Bad tics

    So, we tried a magnesium lotion rub this weekend and it was a terrible, restless night for my son. I found him sleeping on the floor the next morning. His tics were so bad. I have no idea if it was worse from the magnesium or if it's just bad and getting worse as tics do. I read that magnesium can help increase dopamine levels in the brain, but if one has high dopamine levels, then can I assume magnesium would make it worse, correct or incorrect? He had a genetic test done at the naturopath clinic and it showed high dopamine levels and defects that slowed the production of dopamine or faulty receptors. Also, I'm starting to wonder if some of the tics might be myoclonic? The neurologist didn't think so, but he only glanced at my son and my son wasn't doing the shock-like tic. They normally occur when he's laying down (not sleeping or getting sleepy), or if he's sitting still. He also does this arm spasm thing. I wish the doc had time to evaluate his tics. Maybe these are just normal tics, but maybe not.
  8. shelly76

    Bad tics

    Supermom - I know he had a few positive strep tests when he was little, but we didn't do any around the time the tics started unfortunately. We just started testing the last couple years. As far as the autism, he gets some support at school- OT, speech, and a connections group with other kiddos on the spectrum. I'm very new to the mito diagnosis, but the doc was certain he had it even before testing because he was so fatigued. I guess low muscle tone, fatigue, and many other things. But the neurologist said no way to that diagnosis. So, who to believe, you know?
  9. shelly76

    Bad tics

    esonr - Great, thank you. That's a cute label.... love it! I'm okay with spending a bit if it works! You know, he has grown three feet sizes since last September. That might be something to consider. I do notice when he eats, he tics more or when he tilts his head back, and obviously screen time. There's so many ways you can go and all of them are long and costly. I wish I had better insurance. The tics never stopped completely. They changed frequently and got worse for a few days and then better back then, but never completely went away. Now, new tics are constantly being introduced on top of the old ones and there's no break- no relief.... not for the last 7 months, except for a week or two or a day or two somewhere in there.
  10. shelly76

    Bad tics

    Supermom 13 - Yes, he started non-stop eye blinking 4 years ago. It lasted 6 months (pediatrician said it was transient at the time and that it would go away), and then subsided... more tics came and went. Fast forward 4 years later and he's been diagnosed with Tourette Syndrome. His tics have been very difficult the last 7 months and nothing has really helped. He was diagnosed with Autism shortly after the tics started years ago... I didn't believe it because he didn't have any symptoms of autism. The neurologist that we recently visited said it seemed likely he has ADHD as well. Completely normal child until he developed those dang tics. That's why I always thought it was PANDAS, but Cunningham Panel dismissed it. The naturopath diagnosed him with a Mitochondrial Deficiency but I haven't been able to follow that much. I can't even get her to respond without an appointment and my insurance is starting to deny all claims for anything alternative now. So, I'm winging it on my own. Thank goodness Chldren's offers assistance.
  11. shelly76

    Bad tics

    edsonr- Is the mag rub a lotion or oil? I was looking at those as well as the actual supplements. My son was diagnosed with transient tic disorder 4 years ago, but since the doctor wasn't concerned, I let it go. If I had started taking action as you are, things may have been different, so that's great that you're being proactive. My son has also tested positive for many strep throats but PANDAS has pretty much been ruled out. We focused on homeopathy, a multivitamin and the Feingold diet. It did keep the tics down to manageable for quite a while, but each year, it gets more intense-- probably puberty!
  12. shelly76

    Bad tics

    Oh my goodness. I didn't even think about that. Okay... next time!!
  13. shelly76

    Bad tics

    Exactly! And even the experts all have different takes. Of course my son wasn't ticcing much when we went to the neurologist. It figures. Thanks again for all your help! I might get those gummies any way. If he doesn't like them, I sure will. =)
  14. shelly76

    Bad tics

    Hi Supermom13, My son likes gummies... but if they are tart or too sweet(lemon), he will gag. We went through about 5 different multi-vitamins before finally finding one he can tolerate. I thought you were using the Natural Calm gummies, but maybe not? What brand do you have? I mostly use the Dr Teals epsom salt baths. I think they are decent quality, but for some reason they don't calm his tics any more like they used to.
  15. shelly76

    Bad tics

    Thanks you guys for responding... I really appreciate it. Sorry for the outburst last night. Sometimes I just feel so alone in this journey that started years ago. Supermom13-- thank you for the recommendations. I looked at the magnesium gummies, but my son has a very difficult time with flavors/textures, etc. I think I'm going to try and find this brand in unflavored powder to add to milk. Unfortunately my son will only take drops or anything hidden in milk. The epsom salt baths used to work so well, so I would feel comfortable adding more magnesium to his diet. And I will look into the fish oil vitamins as well. Screen time is sooo hard... it's all he wants to do. He's just so hidden in his little head. I have planned a good deal of activities this summer to deter the screen time. Oh, and food coloring sends his over the edge. We started the Feingold (sp) diet many years ago and try to stick with that. Edsonr - Thank you. Yep, I'm about 30 miles north of Seattle. We may have tried the same docs. I would love to find one that can really help and doesn't drain my bank account like so many naturopaths I've been to. Have you guys tried any topical magnesium rubs, or high quality epsom salts? Thanks again!!
×