Pudgeo...

[myrose]

Hello, I noticed your post and thought I might send this link to you:

 

Melatonin can counteract the effectiveness of steroid drugs, can worsen allergic responses and can worsen auto-immune disease. Melatonin readily crosses the placenta, but the effects of above-normal quantities on a developing fetus or a pregnant woman have not been thoroughly studied. Melatonin is freely available in the United States and has been safely used by large numbers of people, so there are few financial incentives for large controlled clinical trials. Adolescents should not take melatonin supplements because melatonin can interfere with the growth and development that occurs after puberty. Consultation with a physician may be advised before taking melatonin supplements.

 

 

Thought it would help

http://www.benbest.com/nutrceut/melatonin.html//

 

 

It seems anything that seems to be SO GOOD always ends up with something BAD as well about it. Hang in there I am sure things will get better for you. The only reason we resorted to meds is because I just could not take it anymore nor was the quality of her life anything close to a NORMAL 5 year old. I told myself that there seems to be side effects to just about everything. If you haven't heard about it today you will tomorrow! I also came to the conclusion that most all is related to dose. And that if tics usually in most disappeared as they got older than hopefully we wouldn't need the medicine forever. I also concluded that beginning at such a young age with low self esteem and feeling like you were different than everyone else would be the WORST LONG TERM SIDE EFFECT ever and one that would also change the rest of her life..... I hate prescription medicine as well as the others on here so please just understand that these are ONLY MY THOUGHTS here. I just feel that doctors prescribe way too fast and high as far as dosage.

If I had high chlosterol or high blood pressure and coudn't fix it with diet and exercise (some cannot) then would I NOT take the prescription medicine that I needed to ensure a quality of life and a longer one????

I am sure I am hated at this point and I know this is an alternative kind of place but I just feel SORRY for these kids and I cannot imagine what some are going through. We are building their foundation that will take them through the rest of their lives...They just need to be kids and do what kids do. I do believe in healthy eating...no argument there. I still try and do all organic and even nothing artificial most times but NOT all times. Everything in moderation I guess. But I could and never will again take away a video game she likes to play with her friends or a tv show she enjoys. I do limit the time, in other words I wouldn't let her play all day but to take it away if I noticed her tics were better????? Maybe if she was older she could make that decision on her own, but at 5 and 6 NO WAY!

I made her feel so different than everyone else in the beginning. Wonder what long term effects that would have on her as an adult.

Gods speed to you....and I will pray for you tonight.

[EAMom]

I also concluded that beginning at such a young age with low self esteem and feeling like you were different than everyone else would be the WORST LONG TERM SIDE EFFECT ever and one that would also change the rest of her life.....

 

Myrose, what you are saying makes total sense to me...

 

Also, don't let feel bad about doing what works for your daughter. Prescription meds are not inherehently bad or fraught with terrible side effects. And as you already know, alternative treatments (herbs, supplements, restrictive diets etc.) are not always safe and/or effective.

[ilovedogs]

Myrose, you are certainly NOT hated here! I know we are all very happy that you found relief for your dd and if it took meds to do that, then so be it. Sometimes meds are the things that are needed. I know I would resort to meds if we were in a worse case scenario, after I exhausted other options. Yet, I would never rule it out. Nor would I deny my child medication for diabetes or cancer or for severe pain if we were challenged in those ways. Thanks for sharing with us!

Blessings,

 

Bonnie

[CSP]

((((((Myrose))))))))

 

Please don't ever feel bad, you never know how many people have found relief for their child because of what you went through. If you had not posted no one would know that maybe their child sufferes the same as yours did.

 

Praise the Lord you have found relief for your child.

 

I know my family has struggled for what seems like a very long time with our son. Some days I feel like we can not take this anymore. Other days I look at this child who does not want medication, what would be best for him?

 

At the end of the day I always feel we must be doing the right thing, he is happy.

 

Your little girl needs to be happy, with happy parents to love her, and that is all that really counts. I believe God does want us to let Him work through medication sometimes, and He will bless it.

 

 

God Bless,

CP

[Chemar]

my goodness I have just read this and must say I cannot possibly see why you would feel you are hated here, myrose

 

I have only ever seen much support for you all over these boards and I sure know I have offered it many times in posts and in many PMs to you too

 

I personally go out of my way to stress over and over how what works for one may not work for another becasue there are so many different causes for tics, and to urge everyone to be careful to do research first on both supps and meds ( and all treatments for that matter).

 

No one here has ever said one should simply not use medications, period....

my goodness the board has numerous PANDAS posts where antibiotics are very much the first line of treatment!

 

Yes, this is a site for primarily exploring alternative therapies, but no one, including myself or Sheila Rogers, has ever said that we are anti medications.

Suggesting caution and that members research side effects is not being dogmatically "anti". It is being careful as many doctors dont warn patients/parents of side effects.

When your child was found to be having seizure activity it was absolutely the correct thing for her doctor to put her on medication. I didnt see one single post here disputing that.

 

Also, I dont think anyone here has ever said that ALL kids who tic should not play video games or watch TV or eat a varied diet.

some children are photosensitive and some posts related to that, not to every child here.

My son has continued with his games and computers and TVs uninterrupted (we did find it very helpful to keep a daylight lamp on instead of darkened room with the flashing that comes from the screen, and ensured he was using LCD rather than CRT screens...and so I am most appreciative of all the research and sharing Claire posted on that)

 

Similarly with diet...those with food allergies and sensitivities need to avoid certain foods not just related to tics but for their overall wellbeing. If you are allergic to penicillin you dont take it. Same with foods. Allergic reactions to foods can be very dangerous!

 

but no one has ever said one should force every child who tics to stop having wheat or dairy or go on Feingold etc etc.

as far as junk food goes, personally I dont feel one is depriving a child by not letting them eat chemical food additives that are more and more being shown to be dangerous to everyone's general health. but again that is a personal decision that each parent has to make.

 

perhaps you were feeling sensitive when you made that post, but I sure do hope you will feel better and remember just how much care and support you have been shown here by all of us throughout all you went through with your child. I really am very puzzled by the post.

[Pudgeo]

Thanks for all the info....I stopped giving it to him last week. I appreciate all the help!

We started doing HBOT 2 days ago and it seems to wake him up at night so I may need to adjust our scheldule so he's not in there at night! Sarah

[myrose]

I am so sorry you took my post the wrong way. I went back and read it and can kind of see why you felt I felt differently. I was not attacking anyone on the board, I assure you. I got many many good wished from everyone here after we found a solution for my daughter. When I said I was sure I was hated.....I never meant by anyone on these boards and I do apologize if it came across that way. I am having a hard time with a situation here and it may have reflected somewhat in my post. I just continue to see a little one suffer daily at my daughters new school and I just can not believe that nothing is being done. After I had given my suggestions and even the website of this board I was told politely to "MIND MY OWN BUSINESS" It just over took my thoughts for the remainder of the day and I posted that very night. My suggestion was magnesium to her parent and I even gave willingly the story of my daughter but its like she does not care.

I know its none of my business and I have to leave it alone now, but I think of this little one everyday. She reminds me of my daughter when it was REALLY REALLY bad. I brought in snacks (pretzels) for the kids on snack day and this Mom would not allow her to have any and the little girl cried so hard and the Mom gave no explanation to her and told her to just be quiet. Then on Sunday while at a kids pool party....everyone at the party was in the pool but this little girl! She sat in a chair all by herself and watched the kids playing in the pool. The look on her face was something I will never forget and thats when I approached the parent..thus it all started. Just can not understand why she would even bring her if she was not going to be allowed in the pool. It was a POOL PARTY.

So I apologize if my post came across to everyone differently than I anticipated. We all know the board has helped everyone in one way or another and I am one of them. If I ever did have bad feelings about the board or people on it, I am not the kind of person to post those thoughts anyhow....

 

Update on my daughter...... still doing well. The topamax at only 25 mg gives us no side effects and NO TICS! Ocd is gone as well, I was always puzzled about this but just recently found out it is used for ocd as well.

 

She is to repeat her EEG next month. If the mild discharges are gone we have a decision to make about going off from topamax. I am not sure what I will do just yet. Everything is going so well that I would hate to rock the boat and bring back some VERY bad memories for all of us. But at the same time I would like to see if the tics are still as STRONG as they were before we started the Topamax. In other words if she doesn't need the topamax I would rather her not have it.

Just don't want to go through the steps of finding out......I will keep you all posted. I still pray for all of you and I hope I/we are included in yours as well.

Have a nice night everyone and again...I am sorry if the post came across as a negative one.

[faith]

myrose, glad things are goin well.

sorry, I'm a little curious, about the little girl you are speaking of, why do you think the mother does not care or is doing nothing? I am curious to why she restricted snacks and the pool? She must be following something to know that these are possible triggers. Is it tics the girl has? sorry, just really curious that if the mom is practicing these things, why she would not be open to the magnesium suggestion or even curious to know more about your story. Maybe she just does not want to talk about it, I don't discuss this with any friends in my neighborhood/school, only close friends NOT associated, just can't take the chance it won't go thru the grapevine, ya know? But still curious.

 

 

 

Thanks, Faith

[Chemar]

(((((((((((((myrose)))))))))))))))

 

thanks for explaining and know my care for you and your precious daughter has always remained the same

[michele]

Faith,

I am like you never knew who you could trust or not because things spread like wildfire in small schools/towns. I am with you on only telling close friends you can trust. However, it is the school and sometimes those close friends I think too that spread the news. One mom came up to me and said she wanted me to know her son had strep. I was wondering how she would have ever known it was Andrew with the reaction to strep. I come to find out she is very close to his teacher. Well her son id in his room for the second year. I wonder how many people she has told? Then as I mentioned here before, a mom in his class is substituting in his room for his teacher for a few days. I think that is a little too close for confidentiality. I get subbing in the school but why in your kids class? Of course the teacher will have to leave notes on kids who need help. I have been a sub and there is alot you learn about kids in the classroom. I kind of wish I would not have ever told anyone looking back. I don't want him labeled at an early age but it is too late. Maybe it is just me but it feels like some of my neighbors with kids his age in his class, look at us and treat us different now. Maybe because they know and I have never told them first hand. I guess I just have to come to terms with this. He is a great kid and kids and parents will like him regardless. We have talked about this here before how families have secrets about TS and I don't want him to feel like that either. I guess I am glad we are in counseling now because there is alot of issues to work through. I am glad also we can talk about it here.

 

Michele

myrose, glad things are goin well.

sorry, I'm a little curious, about the little girl you are speaking of, why do you think the mother does not care or is doing nothing? I am curious to why she restricted snacks and the pool? She must be following something to know that these are possible triggers. Is it tics the girl has? sorry, just really curious that if the mom is practicing these things, why she would not be open to the magnesium suggestion or even curious to know more about your story. Maybe she just does not want to talk about it, I don't discuss this with any friends in my neighborhood/school, only close friends NOT associated, just can't take the chance it won't go thru the grapevine, ya know? But still curious.

 

 

 

Thanks, Faith

[myrose]

Faith I will write you tonight...have got to run to get my daughter in a few and I want to tell you about the situation with the little girl. Maybe at least talking about it will make me feel a bit better...being that it is all I can do.

 

Michele....I feel for you. I can not imagine feeling like I had to keep my daughters condition a secret or worry about how others would treat us and her.

I think maybe I felt that way in the very beginning but as I researched and learned more, it just did not bother me if others knew.

I guess thats a time when you TRULY learn who your REAL friends are. I did though worry about other kids making fun of her but there kids...ya, know how that goes.

Anyhow I have been blessed with a new school and just wonderful people. A lot of the kids in this school have issues from sensory isssues, tics and so on. I found out just the other day at church that one of the kids there was born with only two toes.

Its a small private school, one that we can actually afford. I swear GOD brought me to this place. Everyone is so open and so willing to help. There are no such things as whispering behind backs ect...

All the Moms from the kindergarten class got together this past Friday night for just a girls night. We all sat in a circle and each of us confessed to everything from marital issues, to secrets and so on. We all also talked about the kids and their issues. It feels so good to talk about things and know you are not alone. I LOVE this place and I wish everyone could come here. There is just nothing that no one would do at the school to help out with anything no matter what it was. Its all about understanding and honesty and most importantly friendship and love. Hold your head up and high and who cares what others are saying. Every child in this world is a blessing. SHAME ON who ever thinks differently!