2nd IVIG- how do we decide?

[sptcmom]

We are 5 weeks post IVIG with Dr. K. DS8.5 has been flipping the pages pretty bad some days, good other days- the usual. On the bad days its really scary as we visit the dark places again. I am very confused about when and how does one decide if a 2nd IVIG is needed? Dr K. says to wait and watch for 12 weeks and look for the conversion after that.

How many have seen that conversion to a normal state after 1st IVIG? or at all?

How long should I consider flare ups to be flipping and let them go as part of the post-IVIG process?

If he does get a bonafide re-exposure should I just increase meds or go for another IVIG? or both?

When should dilated pupils get better?

Its just very nerve racking right now. The specialist doctors are sooooooooooooooooo hard to get a hold of and the exchange is so minimal/brief. This forum has been my life line for months. Am still struggling to find a sympathetic local doc who is accessible in times of dire need.

[Iowadawn]

The trend to healing will often be bumpy, but the trend (even with setbacks) should be in a positive direction. (Big picture) If it appears that you eventually backslide & spiral, you need to ask yourself if there is a reason for this. Could there be strep in the family & is this making it difficult for him to heal. Mycoplasma pneumoniae, too? Did your son have an active infection at the time of the IVIG? We are on IVIG #2, still not knowing if this will be the last one. There were serious strep issues in our family and recently MP came to light in my son via blood test. We have him on Biaxin now. I have to believe this is helping. Dr. K is.....I honestly do not know where he stands, so you may have to call your own shots. That's all I'll say. Others should chime in. Dawn

[sptcmom]

The trend to healing will often be bumpy, but the trend (even with setbacks) should be in a positive direction. (Big picture) If it appears that you eventually backslide & spiral, you need to ask yourself if there is a reason for this. Could there be strep in the family & is this making it difficult for him to heal. Mycoplasma pneumoniae, too? Did your son have an active infection at the time of the IVIG? We are on IVIG #2, still not knowing if this will be the last one. There were serious strep issues in our family and recently MP came to light in my son via blood test. We have him on Biaxin now. I have to believe this is helping. Dr. K is.....I honestly do not know where he stands, so you may have to call your own shots. That's all I'll say. Others should chime in. Dawn

Thanks so much. That makes sense. If the regression is staying for a while I know its genuine slide back not just flipping. DS did have Myco and we did do Biaxin before IVIG and after too. The western blot for lyme was negative except band 41. I didnot know about Igenex testing and coinfections etc until after IVIG. Dr. K says to wait 12 weeks before drawing blood for new tests. DS also had leg pains and limping off and on for a year last year so I want to do lyme. The MRI shows abnormal bone marrow signals lumbar thru pelvis and femurs. Dr K says this is bone marrow hyperplasia due to strep autoimmune process but to get bone marrow biopsy anyways at 12 weeks post ivig.

I wonder how does Lyme present itself?

I know with the rages and aggression its supposed to me Myco most probably. Is there any indications like that for lyme?

Also another thing I ask is when there is a real slide back- Do I try ABX, if it works we're fine or do I have to go back to IVIG because we did it before.

I'm sorry I sound so dumb, its so confusing to me. DS has had Pandas since age of 22 mos as we found out ( he flipped back to eye blinking which started at 22 mos) and I've made SO many mistakes that I'm trying to be ocd about this now.

[LNN]

IVIg doesn't help Lyme. Lyme is an infection, not an autoimmune response. So rule out Lyme first. From what I understand, rage can be part of Lyme. "Cure Unknown" talks about a few patients being misdiagnosed with Alzheimers and other neurological conditions. With the limping issues, definitely pursue. That's not being OCD - that's being smart.

[Iowadawn]

Sptcmom-

 

Repeat after me: "I have done the very best I can, over the years for our son, with the knowledge I have been afforded. I have always had my son's best interest at heart. No "woulda, coulda, shoulda's" I will only look forward towards getting him well." That's about as good a "couchlady" imitation as I can do! Much cheaper, too!

 

Our son was definitely having issues by 22mo., also. Alphabet kid/parenting skill deficits! until a PANDAS dx at age 8 1/2.. He's 11 now and we are still working to get on top of his symptoms even after 2 IVIG's. We are planning on Lyme testing this week, too.

 

blessings.

Dawn

[sptcmom]

Thanks Dawn. You're an angel. I appreciate your kind words. I beat myself up daily. I did spot the eye blinking at 22 mos and have been seeing specialists for everything with NO clue about Pandas. I mean language delays, air sucking tics, gross and fine motor regression, sensory issues, OCD etc etc- all have been treated as individual symptoms. At one point I thought he was probably Aspergers and kinda even accepted that DS was going to be quirky. As long as he was overall happy, making reasonable progress I was happy.

The thing that kills me is I have not been an easy mother. When I was growing up, I was physically abused as a child almost daily. As a result, I have been a strict no-nonsense mom, loving but also the yelling and screaming type over the years with the occasional slap or two. I wish I could just kill myself and know I'm going straight to a bad place when I die. My poor son got yelled at so much. I thought if I kept him focused he would just snap out of it. The poor little guy is such a good kid overall and now I know so much more and am able to tell why he did all those weird things he got yelled at for over the years. It caused a lot of strain on the marriage too but thank God DH and I are both together still and trying to help our child thru this.

DS is making fair progress in some areas after the ivig and abx. He's now able to swing a bat, catch a ball, run properly, jump properly, talks better... I am patiently waiting as the post ivig weeks go by.......

[Megs_Mom]

Thanks Dawn. You're an angel. I appreciate your kind words. I beat myself up daily. I did spot the eye blinking at 22 mos and have been seeing specialists for everything with NO clue about Pandas. I mean language delays, air sucking tics, gross and fine motor regression, sensory issues, OCD etc etc- all have been treated as individual symptoms. At one point I thought he was probably Aspergers and kinda even accepted that DS was going to be quirky. As long as he was overall happy, making reasonable progress I was happy.

The thing that kills me is I have not been an easy mother. When I was growing up, I was physically abused as a child almost daily. As a result, I have been a strict no-nonsense mom, loving but also the yelling and screaming type over the years with the occasional slap or two. I wish I could just kill myself and know I'm going straight to a bad place when I die. My poor son got yelled at so much. I thought if I kept him focused he would just snap out of it. The poor little guy is such a good kid overall and now I know so much more and am able to tell why he did all those weird things he got yelled at for over the years. It caused a lot of strain on the marriage too but thank God DH and I are both together still and trying to help our child thru this.

DS is making fair progress in some areas after the ivig and abx. He's now able to swing a bat, catch a ball, run properly, jump properly, talks better... I am patiently waiting as the post ivig weeks go by.......

 

Everyone that is given a child that has neurological challenges, feels that they have failed that child in the past. Everyone. Certainly your history did not give you a great blueprint for how to parent - and yet, you are overcoming one of the greatest challenges and finding your child help for PANDAS. This is not easy under any circumstances. You need to be kinder to yourself to start!!! Dragging that kind of guilt around is going to make you feel stressed & it is hard enough to parent without that kind of additional stress. Start fresh - say you are sorry to your son, if appropriate, and then tell him how happy you are that you have learned together how to best help him & that you will never quit. Then start celebrating what a great mom you are! Many marriages don't survive this stress - so celebrate that as well. You have accomplished a lot.

[Fixit]

Thanks Dawn. You're an angel. I appreciate your kind words. I beat myself up daily. I did spot the eye blinking at 22 mos and have been seeing specialists for everything with NO clue about Pandas. I mean language delays, air sucking tics, gross and fine motor regression, sensory issues, OCD etc etc- all have been treated as individual symptoms. At one point I thought he was probably Aspergers and kinda even accepted that DS was going to be quirky. As long as he was overall happy, making reasonable progress I was happy.

The thing that kills me is I have not been an easy mother. When I was growing up, I was physically abused as a child almost daily. As a result, I have been a strict no-nonsense mom, loving but also the yelling and screaming type over the years with the occasional slap or two. I wish I could just kill myself and know I'm going straight to a bad place when I die. My poor son got yelled at so much. I thought if I kept him focused he would just snap out of it. The poor little guy is such a good kid overall and now I know so much more and am able to tell why he did all those weird things he got yelled at for over the years. It caused a lot of strain on the marriage too but thank God DH and I are both together still and trying to help our child thru this.

DS is making fair progress in some areas after the ivig and abx. He's now able to swing a bat, catch a ball, run properly, jump properly, talks better... I am patiently waiting as the post ivig weeks go by.......

 

I understand...especially if this is your first child....and you see other kids just towing the line.....

i grew up with strict decipline and i am firm also.....and....even though ,..God granted me the wisdom,...as i watched this child..to realize...he cant' control it....and i would try to explain that to others....and they would say why are you letting this or that go....and i reply ...he Can't control...it.

And even though i was able to see what others coudln't......I WOULD LOOSE IT!!!..it is trying on a no nonsense personality....

Now you know more and do better...and you are getting your sons health back

when i think of all the time i have not been there to love him, and my other boys...and sit here focused on this!!!!!

But i console myself with....i will sacrifice this time,,and i believe they know i love them...for finding the path to a healthy young man...and a lifetime of health

 

HOw old is your boy???

[sptcmom]

Thank you Meg's mom. I appreciate your postive outlook and agree. Yes, dh and I did apologize to our son for not believing he couldn't help his behaviors, bad handwriting, walking weird etc. He has forgiven us that sweet little boy in as much as he understands this strep business. The stress level in the house has been down to almost zero this last few months and we're all trying. Stress affects my son's autoimmune very badly. His vitilio at age 4 was due to his language delays stress and no one wanting to be friends with him at preschool due to his ocd and rages........ The no pressure environment seems to help keep him on an even keel.

[sptcmom]

I understand...especially if this is your first child....and you see other kids just towing the line.....

i grew up with strict decipline and i am firm also.....and....even though ,..God granted me the wisdom,...as i watched this child..to realize...he cant' control it....and i would try to explain that to others....and they would say why are you letting this or that go....and i reply ...he Can't control...it.

And even though i was able to see what others coudln't......I WOULD LOOSE IT!!!..it is trying on a no nonsense personality....

Now you know more and do better...and you are getting your sons health back

when i think of all the time i have not been there to love him, and my other boys...and sit here focused on this!!!!!

But i console myself with....i will sacrifice this time,,and i believe they know i love them...for finding the path to a healthy young man...and a lifetime of health

 

HOw old is your boy???

 

Thanks so much for your input. My son is 8.5.