update...seems to be the week :)

[bgbarnes]

We found out about PANDAS March 29, 2010....RAGES were his biggest issues- He had had transient tics in his life but not at the time of this exacerbation. I did not think he had any OCD- I thought we ONLY had the rages....the more I learned the more I was wrong. I learned that the cognitive inflexibility, the repeating himself, the being stuck was all OCD. Then I noticed he had a "touchy" thing that he had to touch things evenly or in a pattern- my heart sunk- I had been very very very naive that we did not have any of these things. Through these boards I also learned about sensory processing issues- had an OT test him- yep, we qualify for that too- however I I can now see it is worse when exacerbated-but I have the OT's report and it is with the school to get him help when needed.

I took aggressive action-spent a lot of money but I would do it all again because we got results- we did Cunningham, Igenex, Mycoplasma testing, allergy testing etc... among a lot of other tests the immunologist ( who has become the local PANDAS doc) wanted to see .... I am convinced my ds8 has had it for years. His titers were high, igg, mycoplasma and Cunningham test showed him in the high PANDAS range. What is sick is I was relieved that he was in PANDAS range because I knew in my gut this was it as I had been searching for years for a reason- TRUST YOUR MOMMY GUT- it is the most powerful too you have. We also tested with a Gastro to see if strep was in his stomach, saw his ENT and discussed his sinuses- they were clear. We did a phone consult with Dr K. We eventually got to a double dose of zith per day ( 500gm for his weight is considered twice the normal script- but what the ###### is normal anymore when you are talking about PANDAS.)

We did an IVIG July 13th &114th 1.5 over 2 days as per Dr K's dosage- had our local Doc consult with Dr K and he does it to a T- which saves a TON of money!! The "touchy" went away after a couple weeks- my son was more relaxed, had little defiance( my son is a challenge on his best day but you could REASON with him) We kept him on the double dose antibiotic until about 2 months ago- dropped it to 25-gm 3 days a week. Did great until a couple of weeks ago- started having that defiance, some cognitive inflexibility, problems in school ad in the last days or so some really subtle "touchy" that he was trying to hide etc... he was changing before my eyes again. I upped the antibiotic to everyday this week and scheduled an IVIG for Tuesday and Wednesday of next week. When I talked to him about it he said Mommy I can feel the strep around me, I said what do you mean- he said- you know it is that time of year when everyone gets sick and I feel different I feel anxious and I have to act bad when I don't want to......

So looking back at it- the problems probably started shortly after the 3 month park post IVIG and that is when the antibodies die off- so it makes sense. We are no where close to where we were- he has had only 1 major cognitive flexibility episode and NO rages so we have made huge progress- a month ago I would have said the monster had left- at least temporarily . Let's see what this IVIG does and see more progress-but I am so grateful I have done the IVIG because that really did more than the antibiotics alone did. I will keep you all posted!!

 

Oh the most important thing is the day after the second day of his first IVIG I asked my ds8 how he was feeling ( he had a headache the first night)and he looked at me with those sweet blue eyes and flashed those amazing dimples and said- "it's gone Mommy- it's all gone."

Brandy

Edited November 7, 2010 by bgbarnes

[kimballot]

Brandy -

 

Thank you so much for sharing. Your last quote from your son makes everything so clear. Recovery is saw-tooth and it is never really all gone... but how I would love to hear my son say "it's all gone" for a while. You've done an awesome job!!

[Fixit]

We found out about PANDAS March 29, 2010....RAGES were his biggest issues- He had had transient tics in his life but not at the time of this exacerbation. I did not think he had any OCD- I thought we ONLY had the rages....the more I learned the more I was wrong. I learned that the cognitive inflexibility, the repeating himself, the being stuck was all OCD. Then I noticed he had a "touchy" thing that he had to touch things evenly or in a pattern- my heart sunk- I had been very very very naive that we did not have any of these things. Through these boards I also learned about sensory processing issues- had an OT test him- yep, we qualify for that too- however I I can now see it is worse when exacerbated-but I have the OT's report and it is with the school to get him help when needed.

I took aggressive action-spent a lot of money but I would do it all again because we got results- we did Cunningham, Igenex, Mycoplasma testing, allergy testing etc... among a lot of other tests the immunologist ( who has become the local PANDAS doc) wanted to see .... I am convinced my ds8 has had it for years. His titers were high, igg, mycoplasma and Cunningham test showed him in the high PANDAS range. What is sick is I was relieved that he was in PANDAS range because I knew in my gut this was it as I had been searching for years for a reason- TRUST YOUR MOMMY GUT- it is the most powerful too you have. We also tested with a Gastro to see if strep was in his stomach, saw his ENT and discussed his sinuses- they were clear. We did a phone consult with Dr K. We eventually got to a double dose of zith per day ( 500gm for his weight is considered twice the normal script- but what the ###### is normal anymore when you are talking about PANDAS.)

We did an IVIG July 13th &114th 1.5 over 2 days as per Dr K's dosage- had our local Doc consult with Dr K and he does it to a T- which saves a TON of money!! The "touchy" went away after a couple weeks- my son was more relaxed, had little defiance( my son is a challenge on his best day but you could REASON with him) We kept him on the double dose antibiotic until about 2 months ago- dropped it to 25-gm 3 days a week. Did great until a couple of weeks ago- started having that defiance, some cognitive inflexibility, problems in school ad in the last days or so some really subtle "touchy" that he was trying to hide etc... he was changing before my eyes again. I upped the antibiotic to everyday this week and scheduled an IVIG for Tuesday and Wednesday of next week. When I talked to him about it he said Mommy I can feel the strep around me, I said what do you mean- he said- you know it is that time of year when everyone gets sick and I feel different I feel anxious and I have to act bad when I don't want to......

So looking back at it- the problems probably started shortly after the 3 month park post IVIG and that is when the antibodies die off- so it makes sense. We are no where close to where we were- he has had only 1 major cognitive flexibility episode and NO rages so we have made huge progress- a month ago I would have said the monster had left- at least temporarily . Let's see what this IVIG does and see more progress-but I am so grateful I have done the IVIG because that really did more than the antibiotics alone did. I will keep you all posted!!

 

Oh the most important thing is the day after the second day of his first IVIG I asked my ds8 how he was feeling ( he had a headache the first night)and he looked at me with those sweet blue eyes and flashed those amazing dimples and said- "it's gone Mommy- it's all gone."

Brandy

 

Thanks for posting...i'm glad things are on the up trend and give him a squeeze from the board...

please continue to update!!!

[amy s]

Brandy,

It's good to hear your update and wishing you and your family the best with the upcoming ivig.

Regards,

Amy s

[thereishope]

Thank you for the update. I appreciate when people share what their kids say and how they express their feelings and thoughts. It helps me learn ways to ask my son's questions if I ever worry about him. Good luck with the upcoming IVIG!

[SarahJane]

Thanks for the positive news! So interesting that he can "feel" strep around him & that he can verbalize that feeling. And how great for you to hear "it's all gone." Good luck with the next IVIG & hearing "it's all gone" again.