HELP,HELP,HELP! Feel like losing battle

[lismom]

Hello, I feel like we can't get rid of strep. My son is 12 and has been sick for 4 months. Long story short, he has recently been on zith for just over two weeks. He has tics but more debilitating is his fatigue. We saw some improvement for 2 days after the first week of the zith but then he tanked again. He showed improvement just again for 5 days and then yesterday he tanked. Does this sound like anyone at the beginning of this battle? I feel so scared this isn't going to work for him. I am trying to stay strong but it is hard. Has anyone one had steps back like this before seeing a steady improvement?

 

Any experiences and advice and encouragement is really appreciated right now. Thanks, Kathy.

[dcmom]

Yes! Hang in there! A quick synopsis:

 

DD's pandas (with strep) episode. She had 4 weeks of symptoms (anxiety, ocd, rage) before we discovered pandas. She went on cefadroxil and had an immediate response. She was almost back to herself for one weekend. Then she backslid (it was heartbreaking) and was stuck in a somewhat better, but not herself phase for about 6 weeks (lots of anxiety, some ocd, no appetite, pale and almost sickly looking). All of that time she was on the cefadroxil, then amoxicillin, then zithromax. After 20 days on the zithromax she was really good (but if you add that up she was on about 2 mos of antibiotics total). I think you should give it 2 months on the zithromax before you get frustrated.

 

Also, consider a steroid burst. My dd has gotten a little worse in the last couple of days (she just reduced to prophylactic zith), if this trend continues then I will try the steroid burst for her.

[ShaesMom]

Kathy,

 

I can't give you much advice but hopefully some encouragement. No "official" dx of PANDAS but my dd started Pen VK three days ago and I've seen her symptoms get worse over the course of the last three days. I'm gonna give it a week and then see about getting her abx changed. We are also at the beginning of this journey; saw a Ped. Rheum. on tuesday who at least believes that PANDAS does exist but does not seem like he will be quick to give the dx. We are waiting on a EKG & Echo next Friday and then an MRI on June 5th.

 

It is terribly hard to watch your "baby" battle something that no one seems to have control of. Keep your faith, your hope up, and your courage strong. You are on the right road to getting him better but it may take some time and trial and error. Remember that you are not alone on this journey. Please email or call anytime even if it just to cry. 402-435-9247 CT

 

Sam

[colleenrn]

Kathy-

I am sorry to hear about your son. How much does he weigh and what is his daily Zithromax dose?

Colleen

[lismom]

Kathy,

 

I can't give you much advice but hopefully some encouragement. No "official" dx of PANDAS but my dd started Pen VK three days ago and I've seen her symptoms get worse over the course of the last three days. I'm gonna give it a week and then see about getting her abx changed. We are also at the beginning of this journey; saw a Ped. Rheum. on tuesday who at least believes that PANDAS does exist but does not seem like he will be quick to give the dx. We are waiting on a EKG & Echo next Friday and then an MRI on June 5th.

 

It is terribly hard to watch your "baby" battle something that no one seems to have control of. Keep your faith, your hope up, and your courage strong. You are on the right road to getting him better but it may take some time and trial and error. Remember that you are not alone on this journey. Please email or call anytime even if it just to cry. 402-435-9247 CT

 

Sam

 

Sam, that is so kind of you. I can't believe I still have tears to cry I have cried so much. I have tried amox,aug,clindamycin and most recently zithromax after some wonderful mothers telling their story how zith was the only thing that made a difference. Thanks for the kind words. Kathy

[lismom]

Yes! Hang in there! A quick synopsis:

 

DD's pandas (with strep) episode. She had 4 weeks of symptoms (anxiety, ocd, rage) before we discovered pandas. She went on cefadroxil and had an immediate response. She was almost back to herself for one weekend. Then she backslid (it was heartbreaking) and was stuck in a somewhat better, but not herself phase for about 6 weeks (lots of anxiety, some ocd, no appetite, pale and almost sickly looking). All of that time she was on the cefadroxil, then amoxicillin, then zithromax. After 20 days on the zithromax she was really good (but if you add that up she was on about 2 mos of antibiotics total). I think you should give it 2 months on the zithromax before you get frustrated.

 

Also, consider a steroid burst. My dd has gotten a little worse in the last couple of days (she just reduced to prophylactic zith), if this trend continues then I will try the steroid burst for her.

 

Thanks, for input. It is just so hard to understand why this thing is so stubborn for some. Trying to stay positive. I am hesistant about the steroid burst because I don't know whether his tics would improve or get worse like some on the tourettes board posted. Although his tics get better when the antibiotics seem to work. Waiting... Thanks again, Kathy

[lss]

Kathy,

 

I understand your worries about the steroid burst possibly making the tics worse. I too was worried about it, but I took a leap of faith, and my son's tics actually got better with the burst. We didn't notice it at first, then a few days later we noticed the tics didn't go away, but got ALOT better. I've heard the tics are hardest to get rid of. We also noticed improvements in other areas, like drawing, his attitude as well.

 

Linda

[lismom]

Kathy-

I am sorry to hear about your son. How much does he weigh and what is his daily Zithromax dose?

Colleen

 

 

My son weighs 90lbs. I have given him 375mg here and there but basically he is 250 per day. Should it be higher? I was scared to go higher because my previous pediatrician(has been replaced with one who believes in PANDAS) scared me about the effects on the liver with this antibiotic.

Kathy

[lismom]

Kathy,

 

I understand your worries about the steroid burst possibly making the tics worse. I too was worried about it, but I took a leap of faith, and my son's tics actually got better with the burst. We didn't notice it at first, then a few days later we noticed the tics didn't go away, but got ALOT better. I've heard the tics are hardest to get rid of. We also noticed improvements in other areas, like drawing, his attitude as well.

 

Linda

 

Thanks, I will keep that in mind if the abx take longer again to kick in. Kathy

[colleenrn]

Kathy,

The "treatment dose" for strep is as high as 12mg/kg of body weight, which would be 490mg for a 90 lb. child. Most doctors routinely give that size child 250mg as a treatment dose, which is usually high enough, BUT, sometimes they need the full 12mg/kg. My sister's pediatrician, who is very conservative and will NOT give her Zithromax prophylactically, but will give it to her when her kids have strep (They are PANDAS also) insists that even in a 65 lb. child, the treatment dose for strep should be 500mg. I have researched this to death and cannot find anything on the Internet to support this, but this doctor says it is relatively new research. Given that, maybe your child needs a short course of a higher dose and then you could bump it back down to 250 per day.

Colleen

[lismom]

Kathy,

The "treatment dose" for strep is as high as 12mg/kg of body weight, which would be 490mg for a 90 lb. child. Most doctors routinely give that size child 250mg as a treatment dose, which is usually high enough, BUT, sometimes they need the full 12mg/kg. My sister's pediatrician, who is very conservative and will NOT give her Zithromax prophylactically, but will give it to her when her kids have strep (They are PANDAS also) insists that even in a 65 lb. child, the treatment dose for strep should be 500mg. I have researched this to death and cannot find anything on the Internet to support this, but this doctor says it is relatively new research. Given that, maybe your child needs a short course of a higher dose and then you could bump it back down to 250 per day.

Colleen

 

I will try upping a little. I just don't understand the rollercoster effect right now. I have spent forever on the internet just trying to make sense of this start and stop of improvement. Kathy

[ShaesMom]

Kathy,

 

I have probably cried just as many tears as you have! Last night was so horrible that my 9 year old son felt he had to come check on me! LOL Somedays I feel like all I want to do is curl in a ball and just let it all out. I have been at the bank, grocery store and church when we emotions have taken over. this whole thing is so overwhelming but we can get through it.

 

Good luck girl!

 

Sam

[EAMom]

Hi Lismom,

I agree with colleen (disregard my post on another topic asking your son's weight/dose!). My dd started taking Azith at 250mg/day last June when she weighed 45 pounds. (Now she is 55 and continues on that same dose.) The immunologist felt that this was a safe her to be on for years! We checked her liver values recently and all was good. If your doc is concerned he about liver he should do a liver panel (and then recheck periodically) for piece of mind.

 

I would also add on advil (ibuprofen) if you aren't already doing so. The immunologist also felt that it would be safe to do this for years as well.

[lismom]

Hi Lismom,

I agree with colleen (disregard my post on another topic asking your son's weight/dose!). My dd started taking Azith at 250mg/day last June when she weighed 45 pounds. (Now she is 55 and continues on that same dose.) The immunologist felt that this was a safe her to be on for years! We checked her liver values recently and all was good. If your doc is concerned he about liver he should do a liver panel (and then recheck periodically) for piece of mind.

 

I would also add on advil (ibuprofen) if you aren't already doing so. The immunologist also felt that it would be safe to do this for years as well.

 

 

Why the start and stop of recovery. That is what has me so frustrated and upset. I am going to up the dose to 375mg for the weekend and maybe couple more days. This is going into week 3. I was doing advil, only once a day because I am concerned his stomach is on overload. Kathy.

[EAMom]

Our dd had significantly improved OCD/mood after 2 weeks of Azith. (remember, our relative dose was double yours since our dd was only 45 pounds at the time!). Tics took longer...6 weeks. At 6 weeks we were much much better but still had an "edginess." We didn't have fatique as a symptom (except that associated with malnutrition). How much advil are you giving? I would give a 90 pounder 2x 200mg tablets. If he takes it with food (I personally) would feel comfortable giving that 2-3 x daily short term (1 week). Then you could go down to 1x daily long term (which is what we are doing).

 

Stress or exposure to strep could be 2 explanations of why your son hits bumps in the road. Have you checked family members for strep (make sure you don't have a carrier?). Our PANDAS dd will react to strep in the environment (eg. when a family member is positive) even though she's on Azith. She doesn't get an infection but she does react. Thankfully, it is not full blown (like last spring...b-4 we discovered azith).