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Update on son, some improvement (finally!)


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Hi all,

I just wanted to give you an update on my son that's somewhat more positive than the downers I've been posting lately. As you know, he's 5 yrs old and exploded with vocal and motor tics last spring. They subsided for about a month (last May; looking back, it was probably due to the amox.), and then came back in June and haven't quit. They have been really bad since Aug- never really letting up. His vocals have been loud and constant. His strep titres have been normal since early July so I'm not able to get anymore antibiotics right now.

 

Anyway, I went ahead and sent him to his first day of Kindergarten on Tues (cried all the way back to my car as I was so worried about him). I talked to his teachers ahead of time and let them know what was going on. They are so wonderful and just such a blessing for him. Since he just turned 5 this summer, I had planned all along to enroll him in the K-program at the Methodist Church preschool he attended; it's smaller and a better fit for him since he's not quite ready for the bus and the "big" school. I am SO glad we did this now that we are having these issues with the tics as I think I would be homeschooling him if he was enrolled in the big public school. He is doing great so far, and his teachers tell me that although he makes noises all day, they are not the loud ones that I described to them. He must be holding them in as best he can. The first day I picked him up, he was ticcing like CRAZY during the ride home. I am just so relieved that he is happy and doing well in K so far.

 

I started him on Coromega on Tues night and we noticed that he seemed a *little* better on Wed. I'd say his tics were down about 10%. The biggest difference was in the morning when he woke up: typically, he starts ticcing before his feet hit the floor from his bed. I know when he's waking up because I can hear him start grunting/yelling. Wed. morning, he was awake and interacting with his sister for a good 5 minutes before I heard his first vocal. I kept holding my breath thinking that maybe the tics had just all disappeared and he was his "old" self again, but no such luck. LOL. Today, however, was even BETTER! His teachers even told me that they looked at eachother during morning work and whispered, "It's quiet!" I also had some peace and quiet in the car. YAY! And the best change of all has been in his temperment. Prior to today, he has been so angry, contrary, short-tempered, disagreeable, etc. Today, he was so pleasant, funny, happy, cooperative... lots of "Yes, M'am"! It was such a great day with my boy. I don't know if the Coromega was a coincidence or not, but we are going to continue and PRAY that things don't ever get as bad as they have been this past month.

 

One last update (sorry this is so long): we had our long-awaited appt with the Environmental Dr. today. I finally feel like I've found a dr that will listen to my concerns, observations, beliefs, etc about what is going on with my son. The dr was very caring and let me know that we were in the right place. He didn't make any promises, but he did tell me that he has seen patients who have had moderate to complete success with tic issues such as this. He wants to do testing (as do I)- a hair test for metals, an expanded stool test for yeast (other things tested here, but I can't remember all of it), and a urine and blood test (ION test) to test for fatty acids, vitamins and mineral levels, IgG food, and amino acids. I am so looking forward to having some answers- I just pray that these tests provide some kind of direction for us that makes a difference for ds. I still think there is some of the PANDAS stuff lingering around, but I also believe that he has some food issues or something else that is out of "balance" inside.

 

Thank you for reading all of this and again, sorry it's so long. I am just so thrilled that we had such a nice day with ds today and that the appt went well. Hope you all are doing well. Blessings to all of you.

 

tlk

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I am so glad you've seen some change and improvements. What is Coromega? Where did you find it? I've never heard of it. Is it a supplement? It sounds like you and Iare at the same place right now. I'm about two weeks ahead of you. We've had the labs run except for the Pyrole because the lab is on shut down for holiday. Now we wait for results. Beware a phone call to these Biomedical Dr. is expensive. I got a billfor $89 when I called and asked the secretary a question ad the Dr. called me back. I have had no luck with Anthem coverage so far. Hopefully if we get the answers we are searching for it will be well worth the expenses. Best wishes.

 

Michele

 

 

 

 

 

Hi all,

I just wanted to give you an update on my son that's somewhat more positive than the downers I've been posting lately. As you know, he's 5 yrs old and exploded with vocal and motor tics last spring. They subsided for about a month (last May; looking back, it was probably due to the amox.), and then came back in June and haven't quit. They have been really bad since Aug- never really letting up. His vocals have been loud and constant. His strep titres have been normal since early July so I'm not able to get anymore antibiotics right now.

 

Anyway, I went ahead and sent him to his first day of Kindergarten on Tues (cried all the way back to my car as I was so worried about him). I talked to his teachers ahead of time and let them know what was going on. They are so wonderful and just such a blessing for him. Since he just turned 5 this summer, I had planned all along to enroll him in the K-program at the Methodist Church preschool he attended; it's smaller and a better fit for him since he's not quite ready for the bus and the "big" school. I am SO glad we did this now that we are having these issues with the tics as I think I would be homeschooling him if he was enrolled in the big public school. He is doing great so far, and his teachers tell me that although he makes noises all day, they are not the loud ones that I described to them. He must be holding them in as best he can. The first day I picked him up, he was ticcing like CRAZY during the ride home. I am just so relieved that he is happy and doing well in K so far.

 

I started him on Coromega on Tues night and we noticed that he seemed a *little* better on Wed. I'd say his tics were down about 10%. The biggest difference was in the morning when he woke up: typically, he starts ticcing before his feet hit the floor from his bed. I know when he's waking up because I can hear him start grunting/yelling. Wed. morning, he was awake and interacting with his sister for a good 5 minutes before I heard his first vocal. I kept holding my breath thinking that maybe the tics had just all disappeared and he was his "old" self again, but no such luck. LOL. Today, however, was even BETTER! His teachers even told me that they looked at eachother during morning work and whispered, "It's quiet!" I also had some peace and quiet in the car. YAY! And the best change of all has been in his temperment. Prior to today, he has been so angry, contrary, short-tempered, disagreeable, etc. Today, he was so pleasant, funny, happy, cooperative... lots of "Yes, M'am"! It was such a great day with my boy. I don't know if the Coromega was a coincidence or not, but we are going to continue and PRAY that things don't ever get as bad as they have been this past month.

 

One last update (sorry this is so long): we had our long-awaited appt with the Environmental Dr. today. I finally feel like I've found a dr that will listen to my concerns, observations, beliefs, etc about what is going on with my son. The dr was very caring and let me know that we were in the right place. He didn't make any promises, but he did tell me that he has seen patients who have had moderate to complete success with tic issues such as this. He wants to do testing (as do I)- a hair test for metals, an expanded stool test for yeast (other things tested here, but I can't remember all of it), and a urine and blood test (ION test) to test for fatty acids, vitamins and mineral levels, IgG food, and amino acids. I am so looking forward to having some answers- I just pray that these tests provide some kind of direction for us that makes a difference for ds. I still think there is some of the PANDAS stuff lingering around, but I also believe that he has some food issues or something else that is out of "balance" inside.

 

Thank you for reading all of this and again, sorry it's so long. I am just so thrilled that we had such a nice day with ds today and that the appt went well. Hope you all are doing well. Blessings to all of you.

 

tlk

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We use Nordic Naturals Childrens DHA 100% Artic Cod Liver Oil 250 MG . My son hates the smell of them. Anyone else have their children complain about the smell or taste of fish oils. The label says great strawberry taste. My son doesn't agree. We have ti leverage over taking them daily. Thanks for the info. I will look for Coromega next.

 

Michele

 

 

We use Coromega, too.

 

For Michelle who asked about it- It's a fish oil supplement that comes in little packets and can be found at any health food store or easily online.

 

Vitacost has it for very cheap!

 

http://www.vitacost.com/Coromega-Omega-3-Fish-Oil-Supplement

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Michele, I tried Omega Kid DHA, Omega-3 fish oil before I tried the Coromega. It is a lemon-flavored liquid- my son really didn't like taking it and I didn't see any change in his behavior. He hasn't really complained much about the Coromega. It is a lemon-lime flavored gel (kind of like a paste or pudding) that we squeeze out onto a spoon. He takes it and then gulps a scoop of ice cream or a drink to wash it down. We call it "Shrek Pudding" b/c it is neon green. It comes in other flavors as well. Dr. Jane Mutch (from Shands- she works with Dr. Murphy) told me about it. She said that it's the first thing that Dr. Murphy tells her patients to try. It may be a coincidence, but this is the first break we've had from non-stop tics in over 2 months. He is still ticcing, but it is down by about 50%. His teachers told me that he didn't make the throaty noises at all today which is what he's been doing in school to let his tics out. They did notice the loud tics that I had warned them about, but he only did them 4-5 times, not back to back all day like he has been doing at home.

 

As far as our testing goes, I was told at yesterday's visit that the tests we are going to run total about $2100. They will then interpret the results and put us on a supplement program. I am going to double check to be sure, but if I remember correctly, they told me that the $2100 is the only cost, other than the cost of my supplements. I would hate to have to pay $$ every time I call with a question! The dr I spoke with sounded very sincere when he told me that I could email him or call the office with any problems or questions. I will check into that, but I'm going to be very discouraged if they charge me every time I have a question. :)

 

I am anxious to hear how your results turn out. Please keep us posted. I hope things are going well with you all.

 

tlk

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Michelle I just read your comment above

 

Beware a phone call to these Biomedical Dr. is expensive. I got a billfor $89 when I called and asked the secretary a question ad the Dr. called me back.

 

i find that reprehensible that you were billed for the doctor answering a question for you by phone!! It would be one thing not to be able to make an appointment and to have a "phone consult", but getting a reply from either the doc or nurse ona question is something different!

 

thankfully that is not standard procedure....if I were you, I would protest, especially as they didnt have the courtesy to inform you that the Doc would charge to answer a question

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I was shocked too. In fact I couldn't figure out what the bill was for at first. I did call his sectretary. I told her I shocked to get the bill as I couldn't remember exactly what I had even asked him specifically. She just said he usually charges $89 for phone calls. I asked what his parent advocate charges out of Columbus for phone calls. He had told me at the first visit this was alot and I might want to call her for advice.

His secretary did not know her fees. I feel I should appeal the bill as it doesn't seem right when I didn't know I was being charged for the calls. However I still need him to interpret the tests and give solutions.

 

I have heard of that pudding Coromega fish oil DHA . Do the kids like it better? At first I wondered if the Nordic Naturals Fish oils could be making his tic/compulsions worse. I have read that about fish oils. I am still giving them though because they seem so important for brain development.

 

I did get back some tests from Great Plains. Andrew does have elevated yeast fungals were elevated arbinose and citralic, hippuric was elevated, hydroxyhippuric was elevated. red blood cells elements were normal. What do you think?

 

Michele

 

 

 

Michelle I just read your comment above

 

Beware a phone call to these Biomedical Dr. is expensive. I got a billfor $89 when I called and asked the secretary a question ad the Dr. called me back.

 

i find that reprehensible that you were billed for the doctor answering a question for you by phone!! It would be one thing not to be able to make an appointment and to have a "phone consult", but getting a reply from either the doc or nurse ona question is something different!

 

thankfully that is not standard procedure....if I were you, I would protest, especially as they didnt have the courtesy to inform you that the Doc would charge to answer a question

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