more IVIG or Lyme

[pathfinder]

Hello pandas parents

My son17 is doing fantastic after 3HD IVIGs and 6 months of augmentin. Before pandas treatment, all I ever wanted was my son to be free of OCD and live a peaceful life but now I want more. I want 100% of my son not 90 or 95% but a whole and complete human as he can be.

 

 

what he has gained from his pandas treatment

1)skin rashes all gone. diarrhea gone.

2) OCD almost gone if any, very short duration

3)ADHD gone --still restless but when he studies, he stays task for hr or even 2hrs at times/ unheard of before IVIG and even when he was on highest possible dose of concerta

4)incredible turn around attitude towards school and friends (His headmistress thinks it is nothing less than a miracle )

5)goes to sleep 11pm and gets up 6 or 7am everyday ( had a severe sleeping problems)

 

here are things that are keeping him from 100%

1)occasional unreasonable rages --- 3times total post 6 weeks of IVIG lasting 3 to 5 minutes. He had red bulging eyes every time that occurred----- I see those red bulging eyes before and after IVIG

2)severe daytime fatigue, constant thirst/urination not related to diabetics---IVIG or augmentin did not make differences.

 

4)carb/sugar/salt craving remain

 

Here are things I considered as my options

1) Do more HD IVIG

2) explore lyme possibility with Lyme Dr. ( many of my mentor members who helped and guided me through pandas protocol when I first started pandas journey moved to lyme territory and they make total sense to me ( I salute to those who are pioneering pandas/lyme together as they are giving us more materials and informations to fight for our kids)

3) wait out for couple of more months

4) switch Agu to Azithro

I went to see my son's pandas dr today to sort out his opinion and they were to hold off on IVIG and lyme but go after other means of immune modulator and revisit yeast med.

I am going to sleep on it.

 

 

 

Michelle

Edited January 13, 2011 by pathfinder

[MomWithOCDSon]

here are things that are keeping him from 100%

1)occasional unreasonable rages --- 3times total post 6 weeks of IVIG lasting 3 to 5 minutes. He had red bulging eyes every time that occurred----- I see those red bulging eyes before and after IVIG

2)severe daytime fatigue, constant thirst/urination not related to diabetics---IVIG or augmentin did not make differences.

 

4)carb/sugar/salt craving remain

 

Michelle

 

Michelle -- I'm no expert, but items 2 and 4 are shouting "yeast" to me, particularly for #2 in the face of neither IVIG or Augmentin making any discernable difference. And I'm pretty sure the carb/sugar craving is a yeast-related behavior because that's what the yeast feeds on, after all. Maybe upping his probiotics or adding an anti-fungal would help nudge him along some more?

 

Other than that, I tend to think time is another major factor in our kids' recovery. Because some of them declined so rapidly, we'd like to think they can heal just as rapidly, but the anecdotal evidence seems to generally run contrary to that notion.

[dcmom]

I will concur with Nancy about time as a big factor.

 

My dd continued to heal, and we saw symptoms continue to resolve for quite some time post treatment.

 

Especially, mood/ temper issues and some hyperactivity- took a little longer bot did resolve. I think we were also able to see these issues more clearly once the debilitating OCD was gone.

 

I feel, if you are in a pretty good place, ride it out a little longer in hopes of seeing some slow improvement.

 

I think, if lyme is a possibility, when things are calm is a good time to explore it, and look at things with a clearer mind.

 

Wishing you continued healing!

[EAMom]

Hi Michelle,

do you live (or used to live/spend time) in a Lyme-y (or tick-y) area? Is there a history of tick bites (yes, I know that many lyme victims don't recall a bite). If that is the case, I would lean towards checking for Lyme at some point, esp. with the fatigue. Is there any neuropathy, tingling? or joint issues?

 

I suppose if you switch to Azith, and you see herxing, that might be a clue. I don't think there is much harm in switching to Azith. for 1-2...if he backslides then you can always go back to Augmentin sooner. BTW, my dd's ped seemd to think that yeast would be more of an issue with Augmentin (vs. Azith.)....I don't know if this is true.

 

I also agree that healing takes time...as long as the overall trend is in the right direction, that is good.

 

I also wonder if the carb craving could be due to low serotonin. Assuming your son isn't on an SSRI, maybe tryptophan or 5-htp might help?

[eljomom]

I have wondered about trying 5 HTP with dd--since ocd is linked with it. but with everyone saying it's not a good idea for pandas kids to take SSRI's, I have not tried it yet. Wouldn't they do the same thing?? Why would SSRI be bad but 5 HTP be okay?

 

Hi Michelle,

do you live (or used to live/spend time) in a Lyme-y (or tick-y) area? Is there a history of tick bites (yes, I know that many lyme victims don't recall a bite). If that is the case, I would lean towards checking for Lyme at some point, esp. with the fatigue. Is there any neuropathy, tingling? or joint issues?

 

I suppose if you switch to Azith, and you see herxing, that might be a clue. I don't think there is much harm in switching to Azith. for 1-2...if he backslides then you can always go back to Augmentin sooner. BTW, my dd's ped seemd to think that yeast would be more of an issue with Augmentin (vs. Azith.)....I don't know if this is true.

 

I also agree that healing takes time...as long as the overall trend is in the right direction, that is good.

 

I also wonder if the carb craving could be due to low serotonin. Assuming your son isn't on an SSRI, maybe tryptophan or 5-htp might help?

[PhillyPA]

Honestly, who doesn't have carb cravings? Not many teenagers or even adults for that matter crave a bowl full of vegetables. Practically everything is a carb. It is comfort food. Carb - sugar- salt ...that pretty much describes the American diet. We must have a whole country with yeast problems. When people want to lose weight, no matter what the diet is, it is necessary to cut back on carbs. People love carbs! I don't know if it is anything to worry about unless he is eating a loaf of bread in one sitting. Eating lots of carbs is not unusual. And don't read this wrong - I am not trying to be a jerk. I'm just sayin' - lots and lots of people overdose on carbs.

[pathfinder]

Thank you guys

 

 

Fatigue has been a major issue even when he was on high dose of concerta (54mg) and 100mg of zoloft. He practically slept through his life during junior high and high school years. ( Abilify (3mg) was added somewhere in 9th grade and it made him almost non functional so we gave it to him as sleeping med at 8pm but it helped his impulse )

 

We live in S. cal but we went to a camping trip to Redwood area for 1week one summer 12 yrs ago.--- We actually camped in a national forest for 3 nights where deers were roaming.

My son did have chronic toe pain for last 3yrs. ( He used to limp severely at one time) His toe was x-rayed and they found nothing with it.--He had Mycoplasma P 3times between 2008 to 2009. ( I was thinking it was Mp that was giving him toe pain as toe pain has been gone with minomycin.

 

As I am writing I am really beginning to see Lyme connection with my son's symptoms but I promised Dr that I would wait 2more months and give a chance for IVIG to settle in and try TSO therapy to control yeast problem while waiting.

Michelle