I'm haveing a rough day!

[Fixit]

Could this be rebounding!!! or Die off!!!!....Vocal screech/scream bad!!!!

 

I went to Dr K site and was looking at ADEM

would he treat adem differently??/

 

then i was looking this up http://adem.org/

 

PATHOGENS ¡X ADEM usually follows an infection, often of the upper respiratory tract. Numerous pathogens have been associated with the disorder. Viruses that have been implicated include measles, rubella, varicella, influenza, Epstein-Barr, coxsackie, coronavirus, HIV, herpes simplex, cytomegalovirus, and West Nile virus [5,6,10-23]. Other organisms associated include group A hemolytic streptococcus, Mycoplasma pneumoniae, chlamydia, Rickettsia, and leptospirosis [4].

 

what would be the difference between that and pitands...not sure if son failed steriod or not we are 22 days past...i know it can take up to 4 weeks

we've had some good days...

we started clarith 1 day before 5 days burst...2-3rd day screech started...they were almost gone to a small sound then that night lost filling...had tooth refilled next day and following day vocals were back up..

pollens have been in the 400's already down here in GA

 

Dr T started us on saving sammy dose in conjuntion with clarith...w/i 24 hours things seemd 10% better...stayed that way, then on 3/23,

2 days ago was great..it was weird because the first time ever his teacher initiated contact with me to tell me, he'kkkk,chchchc, and snorting alot

i was ready to run away...ds comes home...i don't here anything and the tics were down to a 5.....assuming when we started, we were calling his condition a 10 and trying to work our way down the scale......I know she emailed me...but i couldn' understand.....i was on sunshine....the best day in months

 

3/24 things are backsliding

3/25 his screams are about every 10 minutes-20 and with the most intensity i've ever heard....I CANT TAKE IT

 

I emailed dr t last night and called 2 times today and nothing?

dr k has be mia since phone consutl 2/17....called multiple times...faxed results 2 times...i emailed and he replied he was out of town..

I just emailed him now...will he return something to me tomoorw or will i have to wait until monday?...I fiugred since dr t was working with me i would update dr K as things progressed and he could get a fuller picture

 

So i have 12 days of clarith left,,,2 days of aug to get me to saturday moring...

 

Any thoughts....so always responded to abx the other 10-15 onsets...we had 4 almost 5 months between tic episodes...this has been a year since onset and i believe it's myco p came up 300 pts outside of range(i'm afraid all those other streps really messed up his t-cells------or is MYco p a different monster!!!!

[Suzan]

My dd8 had a severe reaction after having some dental work and allergies do trigger her. Maybe these two combinations are causing trouble? I am sorry this is happening and you are having trouble getting some help!!

 

Susan

[CSP]

(((((fixit,)))))

 

My heart goes out to you I remember those days as if it were yesterday. I will be leaving for the weekend other wise I would tell you to pm me and we could talk. I won't be home until last Sun.

 

Hold strong it will always go down again.

 

CP

[thereishope]

Let's hope it's temp and he'll rebound from this setback.Can he take Ibuprofen? Does that help?

 

When you speak to a doctor, let them know about the dental visit. I remember, I think Lyme Mom?, mentioning the metal filling being ingested could possibly cause issues. Ask about that possibility to the doctor.

 

Also, keep him inside for next few days with the windows closed to avoid to much exposure to pollen. How many days has he been taking allergy meds and which ones is he taking?

Edited March 26, 2010 by Vickie

[Fixit]

Let's hope it's temp and he'll rebound from this setback.Can he take Ibuprofen? Does that help?

 

When you speak to a doctor, let them know about the dental visit. I remember, I think Lyme Mom?, mentioning the metal filling being ingested could possibly cause issues. Ask about that possibility to the doctor.

 

Also, keep him inside for next few days with the windows closed to avoid to much exposure to pollen. How many days has he been taking allergy meds and which ones is he taking?

 

i started him on zyrtec a couple of weeks ago...and i'm not sure,even from prior springs if that just makes him more active....not meaing tic, because he starts the spring with no tics, towards the end he usually does tic, but he will present with other illness and would get abx and get better...

But this year we're ticcing going into the season...so is it just doubling down on him!!!!!

 

i stopped zyrtec a couple of days ago and decided to just goe withe clear benendry....i think that was the right move......every spring i go through this and i always suspect the allergy med making him more hyper

about 2 hours after he got home with the sreams...i remembered the ibf....so i gave him 2 instead of the usual 1 i give...i never "noticed" it helping before, but maybe because i wasn't giving enough......about 2 hours after i gave hime ibf( about an hour after i posted this thread) 8pm.things lighted up.....

He is 10...so his bed time is definitely by 9.....was it because he was just finally settling down...was it the ibf

 

this moring things were pretty good.....a couple little screeches he tried to tuck into his sleeve....movements way down...

i guess did the vocal replace a motor.....because if it weren't for the vocal things would be about 30-40% better

with the vocal???? you can't hide a vocal...even if someone isn't looking at you they know you are doing something

And vocals aren't considered "worse" on a tic scale.....it's a personal perception....it's the larenex contracting or other mucsles doing something

but more consistant good sleeping...mood is very good...not that as he's grown i can't contribute some of it to that...but just more pleasant moments,

i would always say he's a happy kid....but there are just more smiles...you know what i mean???

AM i seeing any improve.....anyone else out there questioning what they are seeing.....is it all just hope and dispare???

 

Dr K gave a brief reply last night......i'm not sure he's getting the whole picture....any thoughts on that...its friday...i don't think he takes phone calls and all the paper work, as pere prior calls are in a different office on fridays.

I guess i will try to call Dr T again....my aug runs out Saturday moring....i felt like the doulbing gave me the more noticable improvement

He put me on saving sammy dose....i'm trying to read the book...anyone know how long till tics went away for sammy...I'm spoiled from ds' other remissions!!!

 

PS this moring says it feels like something is itching or at the roof of his mouth???

also his left hand that has been raw since nov...got better with polysporing...started augmenton about 8 days ago...i notice it's healed acouple of days ago...he flaps his left hand the most and he is right handed????? all titers still good a/o a few weeks ago...myco still hight

Edited March 26, 2010 by Fixit

[thereishope]

This is me brainstorming, not saying any of these things are a problem with him...

 

Ibuprofen...like you said maybe you weren't giving enough in the past. How much does he weigh? With my son, he gets liquid IB and by increasing it by 1/2 tsp (per direction of a dr) it made a difference.

 

Itching on his roof of his mouth....either allergies or thrush. I had horrible itching on the roof of my mouth last night. I'm guessing it was allergies. Never had allergies before but I think I'm starting to get them since we moved to the Ohio valley area. Pollen and such gets trapped here. How does his tongue look? Does it have a white coating? Do you give him probiotics spaced out from antibiotics?

Edited March 26, 2010 by Vickie

[Fixit]

This is me brainstorming, not saying any of these things are a problem with him...

 

Ibuprofen...like you said maybe you weren't giving enough in the past. How much does he weigh? With my son, he gets liquid IB and by increasing it by 1/2 tsp (per direction of a dr) it made a difference.

 

Itching on his roof of his mouth....either allergies or thrush. I had horrible itching on the roof of my mouth last night. I'm guessing it was allergies. Never had allergies before but I think I'm starting to get them since we moved to the Ohio valley area. Pollen and such gets trapped here. How does his tongue look? Does it have a white coating? Do you give him probiotics spaced out from antibiotics?

 

i give him the probiotics after school and i switch them around

 

son is 80 lbs..i gave 2 soft gels=total of 400mg...i didn't look at mouth...i've got 3 boys and was trying to everyone out door with health food and proper meds each...2yr old just gets under my feet....

 

i will look when he gets home...yesterday 7 year old said throat hurt..he said that last week...did swabs, they dropped thw long culture one and told me to come back...he's seemd fine till yesterday, today he says he's fine...could all just be post nasal drip...and maybe that is making throat tic more????

i've got to really figure out these allergies...they are thorn bush in my side....i'm affraid of giving him allergy shots

 

for the 4 th or so time...anyone use sublinguals....not homeopathic

here are some links included in this site......

 

http://www.allergychoices.com/se3bin/clien...mp;geniesite=13

 

thanks for being there vickie!!!!!

[thereishope]

Sorry, I know nothing about sublinguals. You guys will have to teach me about that. According to my liquid dosing chart for Ibuprofen, an 80 pound person gets 300mg. However, sometimes you can give more. You can always put a call in and ask if 400 mg is okay. Unless someone on here knows? If you stay with the 400 mg, I probably wouldn't do that long term. If it means anything, looking at it from allergy aspect (not saying allergies is the cause of the setbacks, but I look at all angles), when my son was VERY early on in recovery of exacerbation #3, allergies hit and boy did they knock him down. His PANDAS went over the top. I was giving him Benadryl a few times a day and Ibuprofen a few times a day. Further on in the season, I was able to spread out the Benadryl more and eventually he only needed one dose in the morning. Also, it can take a few days to over a week to get the full effect of allergy meds. This year, I started the Benadryl the second I thought allergies were hitting. He seems to be okay with only getting it twice a day and his PANDAS symptoms are not surfacing from them! His brother's allergies, I waited for full fledge allergy symptoms. Sure enough, they hit him about a week and a half after I started them for my PANDAS son.

 

Side note...my son does well with Benadryl, but some have said their kids get hyper from it (my son gets hyper from claritin). So, just keep an eye on it. Give it a chance to work, but I don't want to make it sound like it's the right med for everyone.

Edited March 26, 2010 by Vickie

[Fixit]

Son just got home from school....he has hives

could it be the augmenton today is 9th day, tomoorow moringin is last dose

could it be...and i waw worried about this....i made them a fruit smoothie w/ frozen rasberries, blueberries, coconut milk..a little oj

I think he is allergice to salciales ..(the rasberries are my guess)..i do give him blueberry waffles sometimes....but in general he says fruti makes his mouth itch....he can eat apple sauce...cooked apples, some pears...canned fruit

the throat thing bothering him in morning was before...the smoothie...

 

i can't get ahold of doc T....does anyone know if he's ok???

i might try to call doc K....

 

good day at school...says teacher...and he looks good now....other than him rubbing his eyes and hives.....

 

CAN SOMEONE CUT ME A BREAK!!!

[Fixit]

I got ahold of doc T....he emailed he is slammed

 

he's going to be speaking with Beth Maloney and Sammy in NJ on 4/2...i think!!!.....not sure if it's all confirmed

[thereishope]

Fixit, is your son the one with the geographic tongue? Oh man, everyone's blurring together again!

 

And...he has hives while on Benadryl?

[tpotter]

For the record, I stopped going to Dr. T last year (he originally diagnosed my son with PANDAS 1/08), because I could NEVER get him to call me back. We went 3 months without abx just before he ended up hospitalized for 4 days with + rapid strep, severe tics, 104 fever, and chorea (which he had already seen). He saw my son a few weeks after hospitalization, and said he had PANDAS, then for some strange reason (never told me), he claimed that my son did not have PANDAS. Incidentally, DS has since been tested by Dr. Cunningham, and definitely has PANDAS (current Dr. says it is moderate to severe case, and he has been treated with IVIG, then PEX, and is being scheduled for another round of PEX...which has made a huge difference for him.)

 

It was after that I found this connection, and started with Dr. K, and then Dr. Latimer (who is much closer to home.) We have been with Dr. Latimer since then, and she is wonderful (Dr. K is too, but as I said Dr. Latimer is driving distance from us.) I have held off saying anything about Dr. T, since seeing his name on this forum, but since you asked about his lack of returning calls, I felt it was necessary to weigh in.

[colleenrn]

Fixit,

Is there any possibility your son could be EBV positive, b/c amoxicillin/augmentin will cause hives if person has EBV. Just a thought.

 

My daughter, years ago, developed hives after months on prphylactic dose of Augmentin. We thought she was allergic, but allergy tests were negative. She has since (3 years later) taken it without problems.

Now, I wonder, did she have EBV at the time and that caused the hives.

 

Yes, you can give an #80 child 400mg of ibuprofen, but the "normal" dose would be about 300mg.

Colleen

[7upMom]

Fixit, is your son the one with the geographic tongue? Oh man, everyone's blurring together again!

 

And...he has hives while on Benadryl?

 

Vickie,

What is geographic tongue??

[thereishope]

A geographic tongue is just a tongue that isn't smooth. It's kind of hard to explain. It's not pitted or anything, but it looks like there's some areas that are flatter than the rest on the tongue. So, it looks like a geograhy map, hence geographic tongue. This is not caused by an infection, or virus, or anything. It's just the way some people are. They can develop it at any stage in life. My husband has this. It isn't bad unless he eats acidic foods. Then it worsens, burns, and bothers him. So, he has to watch how much OJ he drinks, how much pineapple he eats, etc. The dentist said he can use a tongue scraper when it acts up and that might help. I think I read you can get a mouth rinse to help to, but he's never needed that.

 

 

Fixit, is your son the one with the geographic tongue? Oh man, everyone's blurring together again!

 

And...he has hives while on Benadryl?

 

Vickie,

What is geographic tongue??