cara615 Posted February 21, 2014 Report Share Posted February 21, 2014 Should i ever expect a full recovery? I am just feeling so deflated right now. My son is not back to baseline yet and I am feeling like he never will get there. He is much better than he was during his last episode so we know he has responded to abx but why can't we get rid of the tics? Is it possible that he may for the rest of his life and if so then is it Tourettes? i am very confused and doubting everything. its so hard for me to live with all this anxiety and fear for the future and yes I am on an SSRI to help with this. Ds's last episode was in Nov. Am I not giving it enough time?? Link to comment Share on other sites More sharing options...
beeskneesmommy Posted February 21, 2014 Report Share Posted February 21, 2014 Cara, it can be a very long journey. I do not know your son's story, so it is hard to comment. There are other things that you can do in addition to abx. For us, it took a combo of interventions...and peeling the onion layers.Do you have a good specialist? Link to comment Share on other sites More sharing options...
Mommy2MCL Posted February 21, 2014 Report Share Posted February 21, 2014 Cara, I have learned it is trial and error... We had a horrible flare in January... We tried all kinds of thing to help her. Stop Zith, put back on Augmentin. Stop Augmentin back on Zith... New supplements ect... Doc wanted to try her on combo Zith and Augmentin. It's been so good! Her OCD is at almost Zero... She still has the anxiety but she was always anxious even bf this... Her tics are almost non existent too... Every once in a while I will catch her eyes roll but I have to really watch hard... You may need to talk to your doctor about trying something new or different. And I can't remember have you tested for co-infections? That may be something too... If there is an infection hiding in your son, treating him will be more difficult. Our doc also told us to watch for waxing and waning... Since being on the combo she has had one day of increased OCD, one day of increased liability and about 12 ours of some of the older tics coming back... Luckily those didn't last long and she was back to baseline... Link to comment Share on other sites More sharing options...
Lydiasmum Posted February 21, 2014 Report Share Posted February 21, 2014 I could have written your post myself about my daughter! We too are at about 85% - OCD and mood much better, separation anxiety has mellowed but still there - however those damn tics! I am sure we have days without any at all but she is hyperactive by nature so goodness knows there are probably motor tics in the mix somewhere but I am noticing two specific (annoying!) vocal tics - a loud gulping and vibrating lips just like a horse! I wonder about TS so much it consumes me with worry. I too feel discouraged at times but I keep reminding myself of how bad things were for us at the end of 2012 with initial episode. It was horrendous and my daughter (4.5 yrs at the time) couldn't even walk properly or function at school for 3 months. We have never been to that level since. She is taking preventative abx which seems to be keeping symptoms mellow. She will have mild flares with colds/viruses which seem to be shorter and much more manageable. I totally understand how you are feeling but remember that TS/PANDAS/OCD/ADHD etc etc. is a bunch of labels to describe a set of symptoms. They are not 'things' you get. This is why symptoms are so variable and overlap so much. If abx are helping, it is a sure immune thing and what goes into the gut and breathed in from the environment all have an effect on immune functioning and thus resulting symptoms. It really is about a combination of immune support - healthy eating, keeping hydrated, regular exercise, a good supplement (without anything artificial), abx to prevent strep (our biggest enemy number 1), plenty of sleep and keeping stress to a minimum. What I can tell you about our situation is that this is the best my daughter has been in 18 months. She has been taking abx for 5 months and even though we are not 100% neuro-typical, we are heading in the right direction. I guess she may always be 'quirky' but I'm starting to have faith that she won't resemble the worst case of tourettes that you see on the documentaries because really that's what scares me the most. Stay positive and notice the gains, however small. Good luck to you and yours. Link to comment Share on other sites More sharing options...
LNN Posted February 21, 2014 Report Share Posted February 21, 2014 I agree that TS is nothing more than a label a doctor uses for "I don't know why your child is making these movements or noises". It comes with no known "cause" and offers no adequate treatment. It's a useless term and you do yourself a disservice worrying about it, IMO. I know - because I used to turn myself inside out over tics. Tics, in my experience, as just the canary in the coal mine. They tell you something is amiss. But they can be triggered by many things. For my son, they tell me his body is having a hard time getting rid of toxins - toxins released by dying bacteria (a herx), from toxins released by yeast, from toxins released by mold. My son, who had lyme and strep-triggered symptoms, spent 4.5 yrs fighting to get well as we unraveled that onion. I had to let go of my insistence that antibiotics alone would get rid of them. Once I did, I started finding other triggers and then solutions - cures, if you will. He's been off abx for 11 months now. All symptoms that once plagued him are gone. But he's had an eye blink tic that waxes and wanes. We finally found mold/mildew on his bedroom and bathroom windows (fish tank and hot showers were the culprits) and once we cleaned that up, the eye blink stopped. It has just returned, so I'm waiting for Amazon to deliver a dozen petri dishes so I can do a poor man's mold test in every room. We'll then do intense cleaning and inspections in any room that shows mold as an issue. 3 times in the past 5 years, mold has been the cause of his tics, not Pandas or lyme. And I'm not talking tons of black mold from a flood. I'm talking small amounts of mildew on the windows, damp boxes in the basement, and mildew on the inside of the washing machine. Things that didn't bother the rest of the family. Every house, no matter how clean or new, can have mold issues in places you'd never thing to look. So yes, kids heal and leave their issues behind. Many of the parents who joined this forum around the time I did have all made it out of the woods. No, I don't believe your child will have to endure lifelong tics. But I do believe he may have become ultra sensitive to toxins (the same way you can become more and more allergic every time you're stung by a bee). And toxins can come from multiple sources. Remove the toxin and I think you could very well see the tics stop. But you may need to look beyond strep and antibiotics to find the solution. Link to comment Share on other sites More sharing options...
MaryAW Posted February 21, 2014 Report Share Posted February 21, 2014 My DD had bad tics with allergic reactions and giving her Zyrtec clears up the tics within days. Could there be an allergen causing this? Do you supplement with D3 and omega 3s? Link to comment Share on other sites More sharing options...
qannie47 Posted February 22, 2014 Report Share Posted February 22, 2014 When my son had his 3rd episode, it took a very long time for him to move out of all the symptoms. I have found that each episode is unique onto itself. It took awhile for me to find threads of predictability. Have you considered IVIG? If you cant move him out of those tics perhaps you should start thinking about that if it is an option. In the words of Dr. Swedo, "All kids recover from Pandas". Link to comment Share on other sites More sharing options...
cara615 Posted February 22, 2014 Author Report Share Posted February 22, 2014 Just met Dr. T!! He is so nice. He seems to think my son is an abx responder (from what I told him) but thinks there are co-infections that we need to test for. I agree and will certainly get moving on that soon. " peeling back the layers " Link to comment Share on other sites More sharing options...
cara615 Posted February 23, 2014 Author Report Share Posted February 23, 2014 Do you all think that because the azithro has stopped working for my son that he is not a esponder anymore? Or does it seem like we really just need to find the right one and treat possibly other infections? His first real episode was last May 2013 but before that he had tics 2 years prior. Does this mean that we are too far gone? That i waited to long to get the PANDAS diagnosis and now we have to live with this? Anyone else out there see inprovement/resolution after having symptoms for 3 years or so? i feel like we may have missed the wondow of opportunity to help my son. I realy really hope I am wrong. Link to comment Share on other sites More sharing options...
ibcdbwc Posted February 23, 2014 Report Share Posted February 23, 2014 I think several of the old timers on this forum were successful in treatment primarily because with age, their children's immune system became stronger and more functional in terms of regulation. I am not sure we are all destined to end up in Dr. T's chronic stage 4 scenario. Our path has been so twisty turny. I agree with quannie, the episodes and their responsiveness can change depending on triggers but I'm not sure once a non-responder always a non-responder. Jury still out. Link to comment Share on other sites More sharing options...
cara615 Posted February 24, 2014 Author Report Share Posted February 24, 2014 I upped his probiotic from 50 bill to 80 bill yesterday at noon. i saw a marked difference in tics from the AM to the PM. I wonder if that had anything to do with it. Link to comment Share on other sites More sharing options...
cara615 Posted February 24, 2014 Author Report Share Posted February 24, 2014 Time for a change in Doctors as well. Our current PANDAS specialist has let me down bigtime. She wants my son to come in for her to look at him and charge me $220 in order to decide if he needs a med change. Are you kidding me? All she does is observe him for 1 hour. She will not trust me that his tics are getting worse, she needs me to pay $220 in order for her to decide. I call BS on that. Link to comment Share on other sites More sharing options...
smartyjones Posted February 24, 2014 Report Share Posted February 24, 2014 cara -- not sure what you mean by 'marked difference' in tics with upping of probiotic -- do you mean improvement or worsening? my ds12, mild pandas, had severe trouble with a certain probiotic --that was high in billions and had many strains. I can't remember now b/c I think it was 3 years ago, but he had symptoms that are usually only seen in those with short-bowel restruction surgeries. you can google that or try to find old posts of mine discussing it. if you are seeing trouble when you upped probiotic - it could be that that particular probiotic is making things worse. may not be your situation but just thought I'd mention it. Link to comment Share on other sites More sharing options...
cara615 Posted February 24, 2014 Author Report Share Posted February 24, 2014 No, it improved significantly. Sorry i did not specify which way it went Link to comment Share on other sites More sharing options...
LexMom Posted February 26, 2014 Report Share Posted February 26, 2014 I felt there was no hope for my son until my daughter was diagnosed with h. pylori. They treated our whole family since it is contagious and now my DS has been doing fantastic. Now I'm wondering if this was his problem all along. Link to comment Share on other sites More sharing options...
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