things were going ok but...

[mmazz]

Hey guys,

 

Things were going so well but the last strain of strep, summertime hum drum, and the store out of acidopholus has sent us for a tail spin. With battling strep with no acidopholus I thought that things would go ok if I got the acidopholus in him within a week. The product we use is now on back order...its been two weeks +. My mother sits for him while I work and I found that she has been sneaking pasta to him and gives him much more TV than allowed. I guess the bucket got full and he started many things that I did not see since December. I know what I need to do, but I do need to vent because the BAD ATTITUDE is back. The yeast issue is probably at its worst in many months. I picked up another acidopholus in today, not as good but something is better than nothing. Do I hit it hard and double the dose or just do it slowly? Any thoughts?

 

Marie

[Chemar]

Hi Marie......

 

so sorry that you have had this set back and sure hope things turn around real quickly again and that there is a rapid improvement.

 

as to the acidophilus, I wouldnt overdose....just introduce it back at the regular dose and try to increase his good foods and decrease the yeast boosters like the sugars and starches. I really feel that the supplement Caprylate (caprylic acid) is so very beneficial in helping with yeast reduction, and its high magnesium content helps with tics too.

 

here is that special (((hug))) for you

[Andy]

I give my kid alot of probiotics. Not as much as we used to but still alot. I figure that the recommend dosage doesn't fly with a kid with his gut issues for he didn't have the good bacteria in the first place. Just a different view point from Chemar, whose viewpoints I respect very much. As for the food issue, that sucks. It took my wife a year to get it and her mother 2 years to see that yes good food can be bad. Vent to let out the pain or frustration for venting can be good for our health but as you know recovery is a long trip but a trip that needs to be taken and a trip that has unexpected turns and bumps along the way.

[mmazz]

Thanks Chemar and Andy. I think I'll do the regular dose for about a week or two and double it for a while after. I think the die off will be less intense that way. This morning the attitude is much better but the head bending is still there. I will check into the caprylate acid. I think training my mother is the hard part....any supps for that? I have three more weeks until we are back on a normal schedule and for that I am thankful. So these next few will be grueling. Andy I agree that venting is so healthy, especially when my little one uses me as the punching bag when he is like this. It is so hard to keep cool while on the outside you have to be Mother Teresa and inside you feel like a big mess of hot lava. I'm sure many here know that feeling. Chemar, thanks for the much needed hug. You always know when I need one.

 

Be Well;

 

Marie

[ad_ccl]

Hi Marie,

 

Our lives are in sync again, as usual! We are also having a full bucket at our end - I HATE this!!!!!!!!!!!!!!!!!! Things were going so well, perfectly - not a single tic, no behaviour issues etc. We went to the cottage and we started to notice some tics, then some behaviour stuff - ultimately I think there was just something in the change of environment and the complete exhaustion that comes from so much fun!!!! Swimming, golfing, tag, sleeping and living amongst extra people. The bucket overflowed! We are now back home and back on a routine - I started eye drops for him as he said his eyes were itchy - and that is the main tic at this point. It is not too severe but I hate it just the same!!!!!!!!!!

I know we are in a much better place but I still like it so much more when there are no tics etc - since I know he can be at that place - I want him to have a good start to the school year.

I liked your line about your mother and supplements - good you have a sense of humour about it. I would be so livid if someone was giving my son things that I have said are not ok for him - for health reasons. I am lucky that my family has been supportive of our food restrictions - at the cottage we celebrated my nieces birthday with sherbet. The kids all loved it and each got their own candle in their bowl.

I understand the need to vent --- vent away!

 

Hope your son has a quick turnaround.

[Ronnas]

Allison,

 

Hi there! I am back in the city for a short bit as we have been at our cottage for the summer...we leave tomorrow for a family wedding this weekend which is a 6 hour drive...anyways as always I HAD TO check up and see how everyone is doing. Your post about having a waxing of tics while at your cottage caught my eye.

 

I have noticed this with Kurt and overall my conclusion is that it may be a problem with mold as our cottage is older. Kurt has always reacted to mold...he developed asthma as a baby...just a thought

 

...my baby boy is waking up...oh yeah I should mention he is an absolute delight and he is adored by everyone. He is a easy baby and the love of my life right now...BUT...let me tell ya...I'm feeling a bit busy this summer! Today I felt like this ...best wishes! Ronna

[SDK]

Allison,

 

I also wanted to say that molds seem to be an issue with my son too. I have no proof, but his tics are always worse on damp days.

 

I am always keen to hear how your son is going since my son started with tics after a strep infection around the same time as yours. You seem to have more and longer tic free periods than we do. For us, January and February were almost tic free, but then we had continuously mild tics that changed every couple of weeks. A new development was also the onset of vocal sounds (very soft) and sometimes echolalia (repeating the last word of his sentence). Four weeks ago, we had a further increase of tics; tested negative for strep by swab but the titers came elevated again ( they had dropped to normal levels in April). Within the first day of penicillin, tics bacame milder and for a few days dropped to zero (I almost find it impossible to think it was the penicillin that did it). Then, they started to come back at a mild level. I understand your frustration so well --sometimes having problem free days is almost worse! You start thinking that you solved the problem!

 

I was curious what kind of behavioral issues come up with your son. When the tics were at their worst 4 weeks ago, my son was extremely goofy and silly, was talking nonsense all the time, and could not sit still -- constantly bounced a ball or a balloon!

SDK

[SDK]

Allison,

 

I also wanted to say that molds seem to be an issue with my son too. I have no proof, but his tics are always worse on damp days.

 

I am always keen to hear how your son is going since my son started with tics after a strep infection around the same time as yours. You seem to have more and longer tic free periods than we do. For us, January and February were almost tic free, but then we had continuously mild tics that changed every couple of weeks. A new development was also the onset of vocal sounds (very soft) and sometimes echolalia (repeating the last word of his sentence). Four weeks ago, we had a further increase of tics; tested negative for strep by swab but the titers came elevated again ( they had dropped to normal levels in April). Within the first day of penicillin, tics bacame milder and for a few days dropped to zero (I almost find it impossible to think it was the penicillin that did it). Then, they started to come back at a mild level. I understand your frustration so well --sometimes having problem free days is almost worse! You start thinking that you solved the problem!

 

I was curious what kind of behavioral issues come up with your son. When the tics were at their worst 4 weeks ago, my son was extremely goofy and silly, was talking nonsense all the time, and could not sit still -- constantly bounced a ball or a balloon!

SDK

[ad_ccl]

Hi SDK,

 

Glad to report the eye tic is almost gone - and the only thing we have done is started the anti-histimine eye drops - his eyes had been red when pulled down at the bottom and he said the corners were itchy - we have also been experiencing many smog day alerts here so I am sure that is only contributing to things. His behaviour has been fine.

To answer your question about what behaviours we see, it is really mostly being moppy, feeling sorry for himself stuff, hating his "habits" why am I the only kid in the world who can't watch a regular tv, putting himself down - thinking he is not good at anything he is working on - and this is not usually what he is like. He also seems to dwell a little on death right before tics come - I think with PANDAS seperation anxiety is a big one and I think that is how it plays out with him - worrying about people dying, what happens, he will miss them etc. stuff that 7 year olds don't usually think too much about. In the past behaviours related to the PANDAS do include being silly etc - very ADHD like behaviour, lacking focus, handwriting deteriorating, not listening, etc. Overall we continue to do really well in the big picture - we have come a long way - it is hard when we hit a bump in the road - I think the real key for us has been removing the foods and working on his immune system. We did start some homeopathy a few weeks ago in hopes of helping with the photosensitivity - we have seen many changes in him since started the homeopathy all for the good - not sure if it is all coincidental - and in the end it does not really matter - as long as he is happy and doing well, we are thrilled. Improvements over the last few days/weeks include drastic improvement in handwriting, it is really quite unreal the difference, his hand writing is now completely legible, with small letter and spaces between words, he used to write with huge letters and spaces between all letters and no obvious space between words - he has not been practicing all summer but in recent days started writing things on his own - he is also becoming quite crafty - never has he been interested before in crafts - he is creating very cool action figures with tape and cardboard, he made a piggy bank for his money and even tried to make a yo yo with string etc - he was not angry when the yo yo did not work - whereas in the past he would mope for hours about how he can't do anything well. He is playing so well with his brothers -

 

Hope you continue to see some improvements - we are doing the pyroluria test this week - the kit just arrived, I had read a lot about it on braintalk and we want to rule things out - the OAT test is also en-route. We do need to do another ASOT titers test - I will probably do that next week too, we have not done one since January and the numbers were 1800 I think - or maybe it was 1200 - whatever it was it was still really high.

 

Marie - thinking of you and hoping things are getting better!

[mmazz]

Hey Allsion;

 

This is really the first op that I had to reply. My older son took a spill on his motorcycle and broke one arm and sprained the other. It looks likely that they will be able to set it in a cast by Monday. So things are coming around. The little one is doing much better. By Friday night he hit his peak and was a mess. I was so worried. By Saturday he was fine and Sunday not a tic to be had. Oddly enough another tooth has loosened. It seems that the two before this tooth caused tics or so I thought. Perhaps this is all related. I did read somewhere that sometimes tooth loss/growth can cause tics. We shall see. So things that could have made it worse before better is the reintroduction of acidopholis, abstaining from pasta AGAIN or teeth. None the less things are better and thank God for that. Again, I do thank you for your support. I think I count on you more than some of my closest friends. I will be quite busy the next few days by being the arms for my older son, so I may not have time to write. But I will check in and post when I can. Be Well everyone and God Bless.

 

Marie

[ad_ccl]

Marie.

 

I am so sorry for all you are going through - how old is your older son - I know we have kids the same age - and I knew you had one older - but I did not know he was old enough for a motorcycle - YIKES! Hope his arm gets set on Monday and he is on the road to recovery soon. So glad your younger sons tics are much better - you seem to have the same cycle as me - they come and go but when they come it is such a shock and disappointment trying to figure out what caused it makes me crazy - my son is also doing much better - seems the eye drops did the trick again - still some mild stuff but nothing too bad.

I agree about the support found here - I am glad that you feel the same way - I have many very close friends who are wonderful but could never understand exactly what I am going through - I have found much support from this site - I feel like I know Ronna, Chemar. You, and many others - I miss Claire - and it is like a loss of a friend. She helped us so much - guiding our way.

Don't worry about replying - take a break and get your family back on track - I post less these days although I do read every day -( the baby is now 18 months and VERY active - I keep thinking ahead about how much easier things will be in 6 months, a year etc. then stop myself and try to appreciate the craziness of my life right now! ) I still have the first pm you sent me on my list of pm's and am amazed at how far we have both come thanks to this wonderful forum. As I mentioned we are doing a little more testing so I will post any result in weeks to come.

 

Thinking of you and your boys.

[Chemar]

Hi Marie

 

so sorry about your older son's accident and just thankful it wasnt worse. Hope he makes a rapid recovery

 

 

 

Your post about the lose tooth was like a neon light for me....when I first started posting here, that was one of the tic triggers I mentioned frequently.....EVERY time my son has had a tooth issue, his tics intensified, and he even sees a special dentist who is used to treating TS patients so that any dental checkups etc would have minimal impact on him. Thankfully he has reached the age where teeth have less impact and , thanks to the pantothenic acid and royal jelly, he has no more problems with the tooth grinding(bruxism) anymore

 

Glad your little guy is in waning mode again

[SDK]

Hi Allison,

thank you for answering in such detail. I was wondering how many strep infections your son has had since the initial episode last August. I think you are on permanent antibiotic treatment -- right? Does it seem to help to avoid strep infections?

My son had three infections almost in a row last year (one in Sptember, one in October and one in December). Then there was a break until recently. Our problem is that he gets no symptoms, so it is easy to miss them. It is only through the titers that we could tell he had an infection last month (his values were normal in April but high again in July). His throat swab came negative too. He has started a Pfeiffer treatment for low zinc four weeks ago (he seems to be borderline low in histamine too). Not sure if the treatment helps yet. He tested negative for pyroluria. SDK.

[ad_ccl]

Hi SDK,

 

My son has had no confirmed strep infections since being on the antibiotics - we have increased his dose of antibiotics once for a 10 day period when he complained of a sore throat, had a red throat and increase in tics, and large lymph node on neck - strep test (throat swab) was negative - but my doctor wanted to be safe and treat - as the antibiotics could give a false negative - tics increase with viral illness, but this is less and less - my son also showed no real obvious symptoms of strep last August when all of this happened, he did say in passing one night his throat was sore but did not complain again and we thought nothing of it. When I asked my doctor about my own strep history I have had confirmed strep 3 times in the last 2 years - and I complain a lot when my throat is sore. He actually never had ANY signs of illness since he had his surgery at 2 - not one fever, missed day of school etc. Is your doctor (or you) open to the prophylactic antibiotics in light of the regular recurrence of infections? It is such a difficult decision and we are thinking of taking him off the antibiotics but I feel in a way we should leave well enough alone and get him through this winter - I would hate another severe outbreak - yet I also worry about long term effects of the antibiotics. It is hard to be a mom!

 

Marie - hope your guys are going well.

[SDK]

Allison, I was quite intrigued by your statement that your son has had no sign of illness. I always wondered how come my son never gets fever. I asked an immunologist about this, but he did not seem to think it was of any importance. I would be open to prophylactoc antibiotics. Which antibiotic and what dose does your son take? SDK