Jump to content
ACN Latitudes Forums

New School, new tics


lmcgill

Recommended Posts

Hi, an update on our son.

He has had a great summer, practically tic free save a couple eye blinks once in awhile. About a week ago he started a little humming, then we were away the long weekend and he was great, until we were heading back yesterday. He had a little louder vocal humming, a new nose twitch, some body tics and his eye blinks. It all happened in ONE day! He started a new school today and is going into grade 3. I know he is worried about it, but he seems to have a hard time talking about it. I hope he calms down and doesn't have his tics in class, but we are going to talk to the teacher anyway.

Here is my question: The diet, the supps. all seemed to work well, was it all in vain? These tics seem very "stress induced" and I am wandering still if he has TS or just transient tics that get worse with stress. Once again, I will reiterate, he is very bright with no OCD or AD and no history of TS in our family.

The only other thing that seems to have happened lately is that he was on Penecillin for a staff infection and was done his treatment the day before he started the humming. Any thoughts from members on this board?

Link to comment
Share on other sites

Hi there, don't have much to add except I am sorry that he has this going on this week. Your son sounds like he definately reacts to stress and I hope it calms down in the next couple of days after he gets used to his new school. I would definately follow up on the infection. Is there a test to see if the staff infection is still somewhat lurking? It seems like any type of infection would affect the immune system and could cause problems. Best of luck.

Link to comment
Share on other sites

I am right there with you. Andrew started school too. He is having worse trouble then before also. He has compulsions such as pressing his fingers back and urinating frequency, and hyperness, and yelling out. So far no calls from the school though. I sent a letter about his diet and special snacks. I hope this diet makes a difference because it feels like punishment. Tomorrow they have a birthday at school. I will have to send him GF donut holes. I feel like I am drawing attention to him by not letting him eat the regular snack. I wonder if it could be the supplements, diet, stress, illness, antibiotics. I called the immunologist today to see if he could try him on azithromycin. He has not called back yet. I am yet to convince him that PANDAS responds better to this. He wanted to stay with pennicillin. I told his nurse I would send a copy of the article from NIMH or links from this site. You may want to have your son checked again for his strep titers or a strep test. Keep me posted as to what they tell you to give him.

 

Michele

Link to comment
Share on other sites

Did you give probiotics with the penecilllin? If not - then he may have an overgrowth of yeast - causing the reaction.

 

 

Yes I give four Primodophilus tablets a day. Plus digestive enzymes. Again I talked to Dr. Congeni today infectious disease Dr. He wants proof by way of documentation of research articles that Azithromyacin is better then pennicillin. He says Azith has a 5% resistance rate to strep in our area of Ohio. Penn he says is the better treatment for strep. I tried to explain the PANDAS and the immune help azith provides but he didn't get it. He said if Andrew doesn't have strep now then azith would not help him anyways. I will send him the NIMH article on Pennicillin and Azith but I read the article to state it works as well as Penn but did not state better which is what he would want to see. I begged for a five pill trial but no go yet. Also, I talked to the DAN Dr. the other night on the phone about a few questions and I got a $ 90 bill. How do you get this stuff covered by Blue Cross insurance. I guess Autism treatment is excluded by our insurance. Plus I had all that blood work run. I have to go back to hear all the results and his course of action. I already paid $500 out of pocket on the first visit. I am getting nervous. My husband is not going to like this! Help.

 

Michele

Link to comment
Share on other sites

Did you give probiotics with the penecilllin? If not - then he may have an overgrowth of yeast - causing the reaction.

 

 

Yes I give four Primodophilus tablets a day. Plus digestive enzymes. Again I talked to Dr. Congeni today infectious disease Dr. He wants proof by way of documentation of research articles that Azithromyacin is better then pennicillin. He says Azith has a 5% resistance rate to strep in our area of Ohio. Penn he says is the better treatment for strep. I tried to explain the PANDAS and the immune help azith provides but he didn't get it. He said if Andrew doesn't have strep now then azith would not help him anyways. I will send him the NIMH article on Pennicillin and Azith but I read the article to state it works as well as Penn but did not state better which is what he would want to see. I begged for a five pill trial but no go yet. Also, I talked to the DAN Dr. the other night on the phone about a few questions and I got a $ 90 bill. How do you get this stuff covered by Blue Cross insurance. I guess Autism treatment is excluded by our insurance. Plus I had all that blood work run. I have to go back to hear all the results and his course of action. I already paid $500 out of pocket on the first visit. I am getting nervous. My husband is not going to like this! Help.

 

Michele

 

 

Oh, Michele. I feel for you. I am wanting to try my son on Azith as well (had dreams about it all night long last night), but am afraid to ask my pediatrician since we've been in and out of the office over the past few weeks for strept titres and other questions that he just can't answer. My son's strep titres are normal now so I'm sure he won't give the prescription. I am sure he thinks I am just nuts at this point (and I am!). Watching my son tic all day long, every day will do that to a person. My son's tics look painful- constant grunting and squeaking, head shaking, body jerks, licking, etc... Six months ago this was something I'd never seen in my child. It is crazy... I keep saying that over and over. It's the craziest thing how this could all happen so fast.

I have an appt with a different dr on Thursday. I'm going to beg for the azith just to try it, like you said. If she says no, I'm going to beg my pediatrician and then I'm going to go on and beg someone else. It might not work for us, but WHAT IF IT DOES?

Hang in there. You are doing a great job fighting for your son.

tlk

Link to comment
Share on other sites

I really feel your pain and concern for your little guy. Has he had tic free periods over the past six months? I am thinking and praying Andrew is finally cpming out of his episode. He seems less emotional and easier to persuade. Plus his tics that were every couple moments seem less often. Now we can only guess is it the diet, the new meds, the supplements, the fact the episode may have run its course? I just pray he is getting better. Now if we could only keep them away from other illnesses!

Michele How did he do at school?

 

 

Did you give probiotics with the penecilllin? If not - then he may have an overgrowth of yeast - causing the reaction.

 

 

Yes I give four Primodophilus tablets a day. Plus digestive enzymes. Again I talked to Dr. Congeni today infectious disease Dr. He wants proof by way of documentation of research articles that Azithromyacin is better then pennicillin. He says Azith has a 5% resistance rate to strep in our area of Ohio. Penn he says is the better treatment for strep. I tried to explain the PANDAS and the immune help azith provides but he didn't get it. He said if Andrew doesn't have strep now then azith would not help him anyways. I will send him the NIMH article on Pennicillin and Azith but I read the article to state it works as well as Penn but did not state better which is what he would want to see. I begged for a five pill trial but no go yet. Also, I talked to the DAN Dr. the other night on the phone about a few questions and I got a $ 90 bill. How do you get this stuff covered by Blue Cross insurance. I guess Autism treatment is excluded by our insurance. Plus I had all that blood work run. I have to go back to hear all the results and his course of action. I already paid $500 out of pocket on the first visit. I am getting nervous. My husband is not going to like this! Help.

 

Michele

 

 

Oh, Michele. I feel for you. I am wanting to try my son on Azith as well (had dreams about it all night long last night), but am afraid to ask my pediatrician since we've been in and out of the office over the past few weeks for strept titres and other questions that he just can't answer. My son's strep titres are normal now so I'm sure he won't give the prescription. I am sure he thinks I am just nuts at this point (and I am!). Watching my son tic all day long, every day will do that to a person. My son's tics look painful- constant grunting and squeaking, head shaking, body jerks, licking, etc... Six months ago this was something I'd never seen in my child. It is crazy... I keep saying that over and over. It's the craziest thing how this could all happen so fast.

I have an appt with a different dr on Thursday. I'm going to beg for the azith just to try it, like you said. If she says no, I'm going to beg my pediatrician and then I'm going to go on and beg someone else. It might not work for us, but WHAT IF IT DOES?

Hang in there. You are doing a great job fighting for your son.

tlk

Link to comment
Share on other sites

Imcgill,

My vote is for the penecilin being finished as you say humming started shortly after that? How long was he on that?

 

I just want to mention again that I see my son "start and stop" certain tics. They are on my list of "minor" or not too noticeable ones, like I see him pointing to things purposely because I am sure he wants to jet his arm out, but he doesn't do it all day an some days I don't see it hardly at all. So just putting that out there because I know the feeling of seeing a new tic start and thinking it will escalate and your heart sinks and the blood rushes to your feet......sometimes a tic is just a minor compulsion and I believe the more of the health strategies we employ, the milder and shorter-lived some of these things will be........Today was first day of school for us and he seemed great all morning. I thank the Lord for His mercy, and believe all our prayers together are blanketing us all with strength........... :D

 

Michele,

if you are seeing a less frequency of certain tics, that could definitely be a sign that things are calming down and may be on the way out. Keep up what you are doing, sometimes the healing process takes some time to take hold. Did I read correctly - are you starting meds or were you referring to the penecilin?

 

 

Faith

Link to comment
Share on other sites

Imcgill,

My vote is for the penecilin being finished as you say humming started shortly after that? How long was he on that?

 

He was on it for two weeks, as I mentioned earlier, it was for a minor staff infection he got from his cousin. We did give him some probiotic yogurt, but I am not sure if ending the penicillan would have anything to do with the new tics. He seemed better this morning, the first day of a new school took a toll on him. I don't think he has ever had strep, but perhaps it would be a good idea to get him tested.

Link to comment
Share on other sites

We have started the Actos about three weeks ago. We have worked up to half a pill a day. It seems to be a popular new drug in the Autism/biomedical world. It works well for mental clarity. Also has immunity benefits. You can check it out on Autism 1 or the biomedical Yahoo boards. There is some articles online about it too.

 

Michele

 

 

 

Imcgill,

My vote is for the penecilin being finished as you say humming started shortly after that? How long was he on that?

 

I just want to mention again that I see my son "start and stop" certain tics. They are on my list of "minor" or not too noticeable ones, like I see him pointing to things purposely because I am sure he wants to jet his arm out, but he doesn't do it all day an some days I don't see it hardly at all. So just putting that out there because I know the feeling of seeing a new tic start and thinking it will escalate and your heart sinks and the blood rushes to your feet......sometimes a tic is just a minor compulsion and I believe the more of the health strategies we employ, the milder and shorter-lived some of these things will be........Today was first day of school for us and he seemed great all morning. I thank the Lord for His mercy, and believe all our prayers together are blanketing us all with strength........... :D

 

Michele,

if you are seeing a less frequency of certain tics, that could definitely be a sign that things are calming down and may be on the way out. Keep up what you are doing, sometimes the healing process takes some time to take hold. Did I read correctly - are you starting meds or were you referring to the penecilin?

 

 

Faith

Link to comment
Share on other sites

School is always hard when it starts...I know when I was in school especially a new school I had massive episodes of tics. From beating my chest to loud screeches. I went through it all.

I can say it gets better but not perfect. Tics are brought on by stress more than anything....meaning when there is stress they get worse. School gets easier as you get used to your surroundings.

Just remember the little dude is getting stronger than most people ever become. My mom always called me her little trooper...I firmly believe all TS kids are troopers and it gets hard at times and better at others but remember no matter how bad things look your little trooper dude is going to be very strong....It may be later than most kids get to the maturity level they should be at...but they will be very strong adults.

I can take more abuse than anyone I have seen in my profession. My days (and nights) are very stressful and I can take it all in stride....where others go home and you can see the tension radiating off them when I can take more abuse, more alarms can go off, more complants can be filed and everything can feel like a catastrophic meltdown and I can get through it better than most supervisors.

Once a trooper always a trooper.

Remember this can be how strong your little dudes can be and take everyday in stride and help them get through the most difficult problems and melt downs and he will be as strong as they come.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...