I'm new, My 11 yo daughter has bad tics

[airbucket]

Quick question please: in light of the emphasis on natural methods, natural foods, etc, i have always been told by DAN followers and read that antibiotics are awful for the system's of kids who have issues that our kids seem to have. Does anyone know what im talking about? I was always told that antibiotics were bad in the way that vaccines (minues the mercury issue) are bad for your body - just an unnatural intrusion. What do you think?? Thank you.

 

I have been trying to figure this all out for a little over four months now. It is very complicated, and everyone knows more than me, but. . .I would check strep titres with a blood test too. I did not know my daughter had strep, but her titres were high, and her doctor believes she has PANDAS, which requires antibiotics. It is something you would want to rule out.

[emma1]

I am trying to figure this out myself. My doctor said that since the strep titres were high, my daughter needed antibiotics. He is usually pretty conservative with antibiotics, so I assume antibiotics were necessary for this, just as they would have been had my daughter presented with a sore throat.

 

The question then becomes whether to stay on a daily low-dose antibiotic. As I understand it, the purpose of this is two-fold. In some cases, the antibiotic reduces/eliminates symptoms. Also, I believe it would protect the child from further strep infections.

 

Right now, my daughter has finished the course of antibiotics, and her tics are quite mild. Unless they increase, I believe my doctor's recommendation is to refrain from daily antibiotics. If they increase without antibiotics (and decrease with antibiotics) his recommendation is to use a daily low dose of antibiotics. If she doesn't stay on antibiotics, I know we are supposed to go in for a strep screen whenever she has a sore throat or whenever her tics increase.

 

We are also supposed to monitor strep titres every 4-6 weeks to ensure that they go down. If they don't, I am not sure what we do then.

 

Antibiotics do present other issues, such as yeast, so probiotics are important. And, it is important to keep some types of antibiotics in reserve for "other" infections.

 

That is all I know -- I will be interested to hear from others!!

[michele]

Emma,

Your pediatrician sounds right on. Have you asked him if he has treated PANDAS before or has he read up on it for you? I am impressed. It has taken the rest of us alot longer and jumping around to get a Dr. who was informed. Don't forget her daily multivitamins and Omega 3's, 6's or flaxoil if they are tolerated. Are you still trying the GF/CF low sugar diet for her? You go girl. You have figured this thing out pretty quick! If she seems better you would be wiser to stay off antibiotics until a flare up reoccurs. However, the stronger antibiotic really helps my sons tics during episodes. The interesting thing will be to watch and see if the tics come out more after the antibiotic is over. Great about the strep titers testing. No Dr. has ever follwed my sons over a period of time. Just remember when she seems worse to take her in to get checked right away. Good for you. I hope things are improving.

Michele

 

 

I am trying to figure this out myself. My doctor said that since the strep titres were high, my daughter needed antibiotics. He is usually pretty conservative with antibiotics, so I assume antibiotics were necessary for this, just as they would have been had my daughter presented with a sore throat.

 

The question then becomes whether to stay on a daily low-dose antibiotic. As I understand it, the purpose of this is two-fold. In some cases, the antibiotic reduces/eliminates symptoms. Also, I believe it would protect the child from further strep infections.

 

Right now, my daughter has finished the course of antibiotics, and her tics are quite mild. Unless they increase, I believe my doctor's recommendation is to refrain from daily antibiotics. If they increase without antibiotics (and decrease with antibiotics) his recommendation is to use a daily low dose of antibiotics. If she doesn't stay on antibiotics, I know we are supposed to go in for a strep screen whenever she has a sore throat or whenever her tics increase.

 

We are also supposed to monitor strep titres every 4-6 weeks to ensure that they go down. If they don't, I am not sure what we do then.

 

Antibiotics do present other issues, such as yeast, so probiotics are important. And, it is important to keep some types of antibiotics in reserve for "other" infections.

 

That is all I know -- I will be interested to hear from others!!

[Chemar]

Airbucket

 

where we should all try to avoid antibiotics whenever possible and only use for illness that urgently needs them, yet for PANDAS kids, antibiotics are the first line of treatment as that is the only way to control this strep!

 

that is why we talk so of PRObiotics needing to be taken with them (3 hours minimum apart) to restore the natural good flora that the antibiotics also kill

 

Quick question please: in light of the emphasis on natural methods, natural foods, etc, i have always been told by DAN followers and read that antibiotics are awful for the system's of kids who have issues that our kids seem to have. Does anyone know what im talking about? I was always told that antibiotics were bad in the way that vaccines (minues the mercury issue) are bad for your body - just an unnatural intrusion. What do you think?? Thank you.

[pesosmom]

Hello pesosmom and welcome,

you say your daughter is eleven? Is this the first time you have noticed tics, you say about 6 months ago? Never anything before or any other issues?

 

At eleven (is that sixth grade) did she recently have any vaccines that were required? Also, what is her diet like? The suggestions from the others are what I would say too. Don't know exactly how to explain it, but my thoughts are that if your daughter is displaying these symptoms now, and she has the same type of sensitivites/allergies/deficiencies as we believe our kids do, then perhaps her bucket is really overflowing right now. I have been through the headshake with my son, and when we found he had some food sensitivities (not allergies) and removed them, that tic decreased within a week or so. Is that a coincidence, I don't know, but some of us here have noted this correlation of removing foods and improvement, so perhaps you could try eliminating certain food groups one at a time (dairy, corn, wheat, or artificial colored foods and candy) and see what happens. Whatever the case, anything you can do to take the burden off her immune system and strenghten her health is important right now. You can read back on alot of posts where their have been discussions on this type of thing. Keep asking questions and try all the suggestions that are possible for now. You are in my prayers...I know you will find answers.

 

 

Faith

I noticed them a few years ago now that we (my hubby & I) have thought about it and researched different types of tics. I now know that throat clearing, constant coughing, "huh" sounds constantly, always having a belly ache with no known source (she goes to the dr. more than any child around here, the dr. jokes what's wrong this time) but we never in a million years thought tics, just she was overly sensitive. The last time she was vaccinated was in 2005, so I don't know if it could be that. She has been sent home from school 4 times since school started this year for getting so dizzy from the neck bobbing she has fell out of her desk and once was unconscience for a few seconds so we took her to urgent care for tests. They did blood test for thyroid, lead, iron, and others but they came back normal. She had her ears cleaned b/c she produces alot of wax if that makes a difference. She has had a sleep deprived EEG that was normal, we still have a CT scan next Mon. I try really hard to keep her diet healthy when she is at home but she has 3 sets of grandparents she visits often and greatgrandparents that let her junk out on the weekend when she goes there.

 

What do I need to send to the school to let them know she has these tics and its not her fault and she can't control them. She is getting in trouble by the adults. and the bus driver actually told my daughter she needed professional help, (I was on the phone to his supervisor before he turned around in my driveway) BTW Thanks for all your help, your replies help to put a worried moms mind to ease a little

[Dedee]

Also, just to clarify on the Omega's, it is the Omega 3's that you need to add. PANDAS children especially need to avoid any additional omega 6 supplementation.

 

Dedee

[michele]

I was under the belief for the pyrrole if they can't take Omega 3's to give the Omega 6's? What is the problem with the Omega 6's? Is it because of the tics. I was told to have the EPA higher then the DHA. I have still been giving Coremega for the PANDAS bought considered giving Primrose then held off to talk to the Dr.

Michele

 

Also, just to clarify on the Omega's, it is the Omega 3's that you need to add. PANDAS children especially need to avoid any additional omega 6 supplementation.

 

Dedee

[Dedee]

There are two reasons that Omega 6's should not be given for PANDAS children. Dr. Murphys told us that with our son to avoid supplemental omega 6's. One reason is that there is a disproportion of 3's to 6's in the average american diet and this disproportion is part of the problem with the imbalance. We need more Omega three's. The article that I have posted here several times refers to this and explains it better than I can. The other issue is the auto immune issue that PANDAS children have. Now Chemar can explain this best. But basically to much omega 6's can stimulate an inflammatory response which of course is what we need to avoid with auto immune issues. I believe this is correct. Maybe Chemar will read and give a better description. It is explained in one of her posts long way back. I just know that when we went to Shands and were discussing the whole Fish Oil issue, she told us specifically to avoid any additional 6's for my son. It is probably different for children who have tics for reasons other than PANDAS. Sorry don't mean to confuse anyone.

 

Dedee

[emma1]

Michele, Now I am not only confused about my situation, I am confused about yours too. I hope the doctor has some suggestions for you. It seems for PANDAS you need Omega 3 and not Omega 6; for pyroluria you need Omega 6 and not Omega 3. If your child has pyroluria, though, perhaps he is not getting a lot of Omega 6, so supplementing would be OK.

 

Nordic Naturals makes ProEfa which has Omega 3 with just a tiny bit of Omega 6, so that might be an option. This is close to the same formula that is used by Equazen in England for their ADHD studies with children. They gave a group of children their Eye Q product, which also has primarily Omega 3, but also a small amount of Omega 6. According to the studies, the children using the product had documented improvement with ADHD. You can order the Equazen product from the website, and the pills are tiny, which is great -- but the shipping is expensive. They also have an emulsion (like Coromega) called Eye Q Smooth.

 

I googled pyroluria and omega, and found this:

 

Beneficial supplements Vitamin B6, zinc, manganese and evening primrose oil

Potentially harmful supplements Histidine, copper and omega-3 fatty acids

 

Emma

[CarolynN]

I just wanted to mention that removing MSG from my son's diet and giving him the Bontech vitamins from Bonnie Grimaldi has completely changed our situation with our son Daniel . I attached a link to a previous post, on Latitudes, where I talk about MSG and how it is under so many differant names. Here is the link http://www.latitudes.org/forums/index.php?showtopic=2598 .

 

There are answers for your daughter. I have read countless stories of when the puzzle is put together for that person the differance it has made. I will be praying for you for answers.

 

Carolyn N.

[Dedee]

I will try to add the link to an article that explains only one of the reasons for not having 6's. Just remember that every situation is different and you need to go by what your physician tells you for your child. Each child has different symptoms and underlying causes.

 

Literature Review of Essential Fatty Acids

 

 

Dedee

[michele]

Emma you are so sweet. Thank you for your thoughts and concerns. I appreciate you checking on that. I am confused too. I am still giving the Coremega but wonder if it is the best for him.

 

Aren't you new to this? Was this your first experience with tics recently? You seem very aware and informed on so much. I wonder if Flaxseed or primrose oil could take the place of the omega 3's and 6's? I have been hearing alot about Grapefruit extract or coconut oil too.

 

I am torn on the Bontech? How many pills do they require in a day? Do you take them in place of other supplements or in addition to? It is great that they are created with tics in mind. I do hear good things about them on here. Someone else told me about an immune factor 5 supplement they give for PANDAS. Has anyone heard about it? I really notice a difference with the GABA calm. He goes to sleep easier and is less crazy acting. He sat for along time today and colored nicely while he waited patiently for his food in a restaurant. Then he ate all his meat and fries. He is so much improved. It may be the Omniseph and the GABA but wow! IT is like I have a different kid. One who can behave again.

 

My ped called today and sad she looked at the blood tests the DAN Dr. ran and said they were out of her realm to comment on. She said she is on board to up the antibiotic during flares which is great.

 

Also the school sent home a letter to everyone in his class stating that a student in class can have a bad reaction to streptococcal infections and would they inform the school office if their child has a positive throat culture. I thought it was nice of them to try to protect Andrew. That way they can let me know. Also they wanted me to put his diet in writing as far as what he eats and is not eating. It seems we are making progress.

 

Michele

Michele, Now I am not only confused about my situation, I am confused about yours too. I hope the doctor has some suggestions for you. It seems for PANDAS you need Omega 3 and not Omega 6; for pyroluria you need Omega 6 and not Omega 3. If your child has pyroluria, though, perhaps he is not getting a lot of Omega 6, so supplementing would be OK.

 

Nordic Naturals makes ProEfa which has Omega 3 with just a tiny bit of Omega 6, so that might be an option. This is close to the same formula that is used by Equazen in England for their ADHD studies with children. They gave a group of children their Eye Q product, which also has primarily Omega 3, but also a small amount of Omega 6. According to the studies, the children using the product had documented improvement with ADHD. You can order the Equazen product from the website, and the pills are tiny, which is great -- but the shipping is expensive. They also have an emulsion (like Coromega) called Eye Q Smooth.

 

I googled pyroluria and omega, and found this:

 

Beneficial supplements Vitamin B6, zinc, manganese and evening primrose oil

Potentially harmful supplements Histidine, copper and omega-3 fatty acids

 

Emma

[emma1]

Michele, I am totally new to this. I have just been researching this way too much!!! It is exhausting trying to figure out what is best. I started my daughter on Bontech before I figured out the strep connection. I saw some improvement -- but most of the improvement came with the antibiotic. The biggest concern I would have with your child is how to get him to take these huge pills. Does he swallow pills? I have a younger child who wouldn't be able to swallow them. Someone did just recommend that you empty the capsule and mix with peanut butter.

 

I use the Bontech instead of a multi right now. My daughter can easily swallow pills, but there are so many, she does complain! She doesn't take the recommended dose though -- she takes less. I also have her take a probiotic (Culturelle), omega 3, and inositol.

 

I think it is amazing your school would send that note -- it is so helpful. I just posted elsewhere on the board that I was reading there are home strep tests -- with the recommendation that family be tested more frequently, that sure would be fabulous if they really work.

 

Flaxseed is supposed to be a good source of omega 3 (but not as good as fish oil, for some reason). I think it may also have some omega 6. You can get it at the health food store, and grind it up, and mix it in food. Would the grapefruit seed and coconut oil be to combat yeast? I did start probiotics because of the antibiotics, but was afraid to also add an anti-yeast supplement because I had already started the Bontech and the antibiotics. I thought I might see die off symptoms, and not know which new thing had actually caused them.

 

I think I may order GABA Calm, though. My daughter is doing OK during the day, but has a difficult time winding down and getting to sleep. It sounds like this might help that.

[faith]

Michele,

re writing out your son's diet and the letter re strep,

is that part of the process of the IEP, you are going through that, right? I am only in the first stages and he has not been evaluated yet, did you do that already? I am just wondering what the process will be like and how much input I will have as far as my "alternative" treatments? How will go about having them implement any accomodations that I feel could be beneficial, but may seem "unorthodox" to them?

 

Also, if anyone has 504 plan for their child, how does the "alternative" things come into play, if any?

 

Thanks

Faith

[michele]

Hi Faith,

I am also new to this process. I think the school may have had its first IAT meeting about Andrew on Thurs. I have not heard from them yet. This is like a brainstorming session with all the key players Principal, nurse, OT, special ed, teacher speech. I had already requested an evaluation for speech and occupational therapy. I sent in his Dr. reccomendations and precription for OT. They called me for information on diet and meds and treatments. I figured they were getting ready for the meeting. They might just want everything documented for their protection. The letter was their idea because I asked them to inform me if there was any strep in the classroom. They said they are not aloud to ask for this over the phone by law so they explained it in a letter instead. In preschool we reported reason for absence and they hung it outside the door on a note with the date. It was a nice reference. We will see what the outcome shall be. I wassurprised they asked me to send in a list of his meds. They already knew about the pen v so I am guessing they were wondering if he was on any ADHD meds. I just listed vitamin supplements and probiotics. I don't think they need to know every supplement he is on it is not as if they give it there. At least they are trying to protect him. We are in a great school district and I know the principal personally so I will see if it makes a difference.

 

Michele

Michele,

re writing out your son's diet and the letter re strep,

is that part of the process of the IEP, you are going through that, right? I am only in the first stages and he has not been evaluated yet, did you do that already? I am just wondering what the process will be like and how much input I will have as far as my "alternative" treatments? How will go about having them implement any accomodations that I feel could be beneficial, but may seem "unorthodox" to them?

 

Also, if anyone has 504 plan for their child, how does the "alternative" things come into play, if any?

 

Thanks

Faith