Lynn777
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Posts posted by Lynn777
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Hello!
We use Benadryl, however please note that in some kids it does increase tics, we are lucky in that Benadryl not only works for my son's allergies, but also reduces his motor tics. I also give him Quercetin supplements (recommended by our integrative doctor) & use all natural saline nasal spray daily. Additionally, I use all natural cleaning products in his room & we run an air purifier at night.
Take Care,
~Lynn
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Hi Diane,
Welcome, sorry you are feeling overwhelmed, especially with the diet. I felt the exact same way in the beginning & when I wasn't crying about the tics I was crying about the extreme difficulty in managing my son's diet. However, you will get used to the ingredients & after a while you will feel much more comfortable.
My best suggestion is to start off shopping at Whole Foods instead of the regular grocery store, that really helped me in the beginning because even though all the foods at Whole Foods aren't perfect, you rule out many offending ingredients just by walking through the door.
We use Rice Milk and have found many suitable alternatives as far as rice milk cheeses & we also use the So Delicious brand of yogurt, cultured coconut milk & even ice cream. It works for us.
Also, my best advice is don't be too hard on yourself in the beginning. There might be ingredients that you don't understand & slip by. However, I found just by going organic, eliminating artificial colors/preservatives & MSG made a difference. As you get more familiar and as your son is on the diet longer you will also start to notice certain food items that trigger his symptoms or you might realize food really isn't a trigger for him at all. You might want to keep a diary or journal in the beginning & see if it helps.
Good Luck & Hang in There -
~Lynn
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Hello!
I am not sure what your doctor/insurance situation is, but we had the IgG blood test done on our son and then chose to receive the NEI Guided Nutrition Program, which is a 55 page custom designed report that details all of my sons intolerance, possible cross-reactants, recipes, baseline symptom, detailed instructions & tracking charts. Our insurance paid for the blood work & the report was $20 out of pocket & I use it all the time. It it so organized & helpful. Anyway, I have attached a few links:
http://www.news-medical.net/news/20100112/NeuroScience-launches-NEI-Guided-Nutrition-Program.aspx
https://www.neurorelief.com/index.php?p=nutrition#
There are different ways you can do diet elimination/reintroduction, so I highly recommend consulting with an integrative type doctor. But, if you don't want to go the formal route I would start by reading the basics online, WebMD has a section called - "The Food Allergies Elimination Diet and Food Challenge Test", it also includes a basic chart.
Others might have other information they can share too.
Sorry to hear you have been dealing with tics for so long. I hope you find relief & success with diet & supplements.
Best Wishes,
~Lynn
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Thanks for all of the replies. DS is currently on lots of supplements & a special diet. That was the first thing we changed when we realized he might have TS. He also had his Thyroid checked twice & it seems to be okay. However, it appears from his current blood-work that he might have a B12 deficiency. I have no idea if that could be related, will ask the doctor.
All his pediatrician says is "growing pains", but like fightingmom said, I never had growing pains that woke me up from a deep sleep & neither did my older son.
hugs2day - Your son's experience sounds exactly like my sons. His is mostly the calf, but seems to travel into the thigh a little bit. His also seems to last about 20-30 minutes, but then he has difficulty calming down & going back to sleep. Also, the first two times it happened I was able to just give him the Motrin, but the other night I ended up giving him Benadryl too just to calm him down. If I find out anything else I will PM you.
We have an appointment with Dr. T next weekend, I'll ask him about it too.
fixit - Interesting link. Thanks for sharing.
~Lynn
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Hi Everyone,
I am wondering if muscle pain in the thigh/calf is common. I did read on one of the threads "joint pain", but this is definitely muscular. Last night my DS woke up at 1:30 a.m. crying that the muscles in his legs hurt. This is the 3rd time in 3 months this has happened & he has occasionally brought it up during the day.
Anyway, each time I have given him Motrin, rubbed his leg(s) and he will eventually fall back to sleep. It also seems like he has restless legs whenever this happens, his legs seem very "twitchy". Everyone keeps telling me it is "just growing pains" and not to overreact, but I just thought I'd ask & see if anyone here has experienced this.
Thanks,
Lynn
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Dcmom - Thanks, I will ask Dr. T about the clindamycin. I am very familiar with antibiotics, but haven't heard of that one.
MichaelTampa - I'm sorry, I am not sure I fully understand your comment. However, if I wasn't clear, my DS does appear to exacerbate when sick. It's just that sometimes he exacerbates without illness symptoms or only shows very mild symptoms, that is what I think happened this last time & finally pushed me to get the blood work done. I am clueless about Lyme, all I know is it appears two strains showed up in the bloodwork, but apparently that still means "negative Lyme" since it has to be at least five???
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Eljomom - I would love to talk/keep in touch. We have an in-office appointment with Dr. T on April 7th. We live in PA, so it's not that far of a commute.
Dcmom - My son has not had a recent infection that we know of, I only suspected when the exacerbation started about 5 weeks ago. That said we have had 3 positive throat cultures in the past year & also 3 other times where DS only experienced a slight sore throat & mild fever, then 3-5 days later I had full blown strep. I had severe strep from the time I was 6-16. Then it seemed to settle until recently. Now, I am starting to think my son is bringing it into the house & I am the one who get's the actual full blown...days in bed strep & he get's tics, etc.
He has been treated for strep during each positive throat culture. With the straight Amox his symptoms went away after 3-4 days on the antibiotic (2x). Then he was treated the last time with Augmentin and it almost seemed like he got worse. That didn't make sense to me & made me drop the PANDAS theory, until recently when different things kept bringing me back to the possibility.
I really hope Dr. T can point us in the right direction. Thanks for responding, I am feeling very "freaked out" right now.
~Lynn
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Hi Everyone!
I have been on & off the board for about 2 years. I won't tell my story again, but my son DS is 6 years old, had a pretty extreme onset. But now, he has mostly tics, mild OCD, no rage, but very perfectionist personality I have bounced between accepting the tic disorder & digging into PANDAS the whole time.
Anyway, finally followed through on a consult & blood work with Dr. T. I just received the results today & frankly I feel just as confused as before. I know I have to wait for Dr. T to review them with me. But I'd love any input/thoughts in the meantime.
THANK YOU!!!!!!
Here are the 'abnormal' or 'high' results:
CBC:
MCV - 87 (normal 75-86)
MCH - 30.3 (normal 25.5-29.9)
EOS - 6 - (normal 0-4)
Lyme:
IgG p58 Ab - Present
igG p41 Ab - Present
Overall Lyme is Negative
Other:
Anti-DNase B Strep Antibodies - 234 (normal 0-77)
Ceruloplasmin - 31.8 (normal 15-30)
Streptozyme - 1:400 (normal <1:100)
Antistreptolysin 0 Ab - 284.4 (normal 0-200)
Thanks again...
~Lynn
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Thanks everyone, I checked with my insurance and as long as I go in-network to Lab-corp they should be covered. We have an appointment at 1:30 today & I am so nervous. I haven't even told him where we are going because I know he is going to freak out.
Also, thank you for the tip on having copies sent directly to me. I didn't even know I could request that!
Does anyone remember how many vials of blood they took for all 12 tests?
Thanks all!
Lynn
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Hi Everyone!
I have two questions, Dr. T has ordered a bunch of blood work for my son (12 tests in all)...
1. How long does it typically take to get the results back?
2. Did your insurance pay for these tests or were they out of pocket? If out of pocket does anyone mind sharing how much it cost in all?
Thanks,
Lynn
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Thanks, the information was helpful & interesting. My son with tics is only 6 and in the scheme of things he is mild. So, it would be a while before considering patches for him, if we ever have to. But I never read anything about it helping for ADHD, but it makes sense. I actually started giving my older son a coffee drink every morning at the end of last year & the teachers saw a difference in his attention. So, although it goes against everything I've researched for "natural" approach - I sure don't think it is any worse for him then meds!
Looking forward to hearing how the patches work for your son. Good luck & thanks for the response.
Lynn
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911RN - Can you give more specifics regarding the nicotine patches? I have read about the studies, but had no idea there were doctor's actually prescribing it. I have one son with tics & another with ADHD. My son with ADHD did very well on Strattera until he hit puberty. They are both on only supplements at this point.
Also, to answer the original poster. It is my understanding that Strattera & Intuniv are the medications least likely to exacerbate tics.
Anyway, I'm very curious about the patches. Hope it works out...
Lynn
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Hi Everyone,
I haven't been on the boards as much anymore. First, I needed a break & second, the tics were pretty low from Feb - July. The tics are never gone, but they were so mild no-one noticed except me & my husband. Despite the waning, we kept him on all of his supplements & his strict diet. Honestly, the child almost never misses his supplements & rarely cheats on his diet.
Well, about two weeks before school started, DS started with a breathing tic (so painful to watch). It is honestly scary. It's the first tic that has really annoyed him. He's also starting to make more & more noises. Nothing loud, but lots of little things - a noise that sounds like he's trying to scratch his throat with his tongue, a clicking sound, small grunts (these actually have never gone away), etc. I swear he has (at least) 5 tics right now.
So, does this mean he's getting worse? Is it just waxing? Does this mean I need to start researching again? Should I be doing more? Adding more supplements? I just don't know, I honestly feel kind of lost & helpless at the moment.
Thanks!
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DS had significant improvement on Amoxicillin (x3). Pandas doc thought it was quite definitely strep/infection related (mostly tics). He put us on Augmentin for future outbreaks/exacerbation's. Now DS isn't responding positively to Augmentin or Amoxicillin, so I'm going back to thinking this is just Tourettes plain & simple.
Pandas doc said in his opinion ALL Tourettes is Pandas, not sure I buy that.
Thoughts?
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Helped us. We have been on them for 15 months. Not saying DS is a 100%, but definitely better then onset...
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Make that 3...
We had been doing much better February through July. Now, the last 2-3 weeks have been awful. The tics are waxing & we have an almost constant breathing tic.
I thought DS was leveling out & I thought I was leveling out & have realized neither is the case. I'm about to go off the edge with this one. So, hard to watch. Plus, school starting. It's so disheartening!
I don't have any extra thoughts because I have no idea what caused our spike, but just wanted to say I can relate.
Take care.
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If it is allergy induced, have you ever tried Benadryl? My son's tics respond well to Benadryl, other people it makes them worse. That said quercetin is like the natural equivalent to Benadryl, but it takes longer to work (IMO).
My son does take quercetin, but we started with Benadryl to see if it helped, it did & so then we started giving him the natural supplement.
Just something to think about.
Good luck,
Lynn
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Hello!
I want to preface this reply with the fact that my DS (14) that has ADHD does not have tics. That being said, he was diagnosed at age 6 and went on Strattera, it was fantastic for him and worked really well until he hit puberty. For some reason at that point the Strattera started making him feel sad, nothing major, but enough that we took him off of it.
I am now going the natural route with him, I am not going to lie to you, nothing has worked as well as the meds. The doctor's want to try him on a stimulant, but I forbid it because my younger son has tics. The doctors don't see this as an issue despite the label warnings that you shouldn't give a child with tics or the child of a relative with tics stimulants.
Anyway, I agree with Chemar, the most critical supplement in my opinion is Omega 3's, Ginko is also good & Magnesium, Zinc & Grape Seed can be beneficial too. I also know with my son sleep is a huge issue, if he sleeps his focus is better, if not he's off in no mans land in school. So, I have been using melatonin as needed. I started him on Source Naturals Attentive Child & saw very minimal results. I am now trying Solaray Focus For Children, along with a quality multi-vitamin, Omega 3's & Cina - we'll see how that goes for the summer.
I am also a huge proponent for Cognitive Behavioral Therapy & my son has an IEP at school.
Let me know if you have any other questions, I have ADD myself (never treated) & have been dealing with ADHD for 12 years (my son was diagnosed at 6, but I knew at age 1.5).
Good luck!
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Thanks for the replies. I am staring DS on it very slowly since he is now off ABX. We'll see what happens.
I read, as said above, that OLE shouldn't be taken in conjunction with ABX because it can greatly reduce the effectiveness of the antibiotic. However, I didn't know about the probiotics, I am still giving DS cultured coconut milk, so I hope that isn't an issue.
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I thought I read posts on this before, but the search doesn't want to work for me tonight. Has anyone used this & seen results? Also, how much do you typically give? My son is almost 6 & on the skinny side.
I read you shouldn't take it with antibiotics, but my DS just came off of them & I thought this might be a good interim supplement.
Thanks!
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I'm not a PANDAS expert, but I understand the broken heart. I almost cried reading this, I am so sorry for the setback & for your pain. I think one of the hardest parts of all this is the getting better & then getting worse - it's such an emotional roller coaster...
None of our kids or us should have to go through this. I hope & pray tomorrow is a better day for you & your son.
Your in my thoughts & prayers.
~Lynn
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Thinking of you & saying a prayer for you!
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What a great post, I'm so glad it isn't just me! My poor son can't do anything - cough, hiccup, make faces, etc. I try not to ever say anything, but my heart always goes into immediate meltdown.
The comment -- "What's sad is that we can't just enjoy the "kid" moments -- *everything* has a secondary meaning to us." it is SO true.
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I am also treating DS with a strict all natural diet & supplements. He gets probiotics & cultured coconut milk & seems to have less gut issues then the rest of my family. Also, I was on about 5 antibiotics a year from the time I was 6-15 for chronic strep throat & upper respiratory infections. I am fine & have no resistance to antibiotics. Yes, I do have some bowel issues (that also run in my family), but I'd take that any-day over the tics & such my son has to deal with.
I am not sold on the constant antibiotics, but if he is sick with strep and/or really exacerbating I'm not sure I think that is such a bad thing, as long as they work!
Again, I'm a newbie & don't even understand all of this yet, so that's just my two cents.
*Beeskneesmommy - Thanks
Wish Us Luck!
in PANS / PANDAS (Lyme included)
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Hi Everyone!
Please send us good thoughts today, we are leaving in about 2 minutes for our 2 hour road trip to meet with Dr. T and review DS's bloodwork.
Hoping all goes well and maybe we get some answers.
Thank you!
~Lynn