hey worrieddad

[EAMom]

I saw you just posted...and that your son has had more IVIG. How is he doing? How are you doing?

[Worried_Dad]

Hi, y'all:

 

Have to admit I've been just lurking lately, for several reasons. First, this latest exacerbation has been the worst yet and had sucked all the energy out of my wife and me. (I know everybody on here can relate!) Second, was waiting until (I hope) I could share a success story.

 

So far, no such luck.

 

Per Dr. K's recommendation, we did 2 additional full rounds of IVIG 28 days apart (in June and July) in Chicago. He felt the "double dose" gave us the best chance of seeing major improvement, given our son's age (13) and symptom severity. We never did find a local doc willing to order this for us in our area and gave up waiting. Dr. K also administered steroids (decadron - sp?) to try to speed the healing process / reduce the inflammation.

 

This time around, we just have not seen the rapid, dramatic improvement we saw in the first 3 weeks after round 1 of IVIG (last October). We've seen some progress, definitely signs of hope, but it's been slow and subtle compared to the 1st time. We figure the damage is more severe this time and will take longer to respond. Dr. K did tell me not to expect the steady upward trend to kick in for at least 2-4 weeks after IVIG round 3, so we're praying it's still going to happen.

 

Wish to heck we had better news to share at this point. We really want to provide hope for others whose children appear to need a 2nd or 3rd round of IVIG. Again, things have gotten better... but we have a very long way to go to get to 80-90%.

 

I promise to post another update on the forum soon. Just didn't want to discourage anybody or bring 'em down - we all need "pick-me-up" stories, eh?

 

Take care, y'all, and best of luck to all of us living through this nightmare for our kids and families!!!

[ShaesMom]

WorriedDad,

 

So sorry to hear that your son has not improved much. I sincerely hope that you see more improvements as the weeks go by. I'll keep your family in my thoughts and prayers.

 

Sam

[EAMom]

Hang in there Worried Dad. We're all rooting for you and your family.

 

Have you repeated Dr. Cunningham's blood levels since the last 2 IVIG's?

 

You might also check with NancyD as her dd is older and has had several IVIG's...she is seeing results but you'd have to check her posts (or ask her) as to how long it took to see an improvement.

[NancyD]

Hi Worried Dad,

 

I'm happy to talk with you any time you'd like. Hang in there with the IVIG -- and give it a little longer. My daughter is 13 and started her infusions last fall. We did not see any results until ~ the third infusion and what we saw was amazing. The rages and emotional dysregulation were gone, the tics about 90% gone, and she began sleeping through the night for the first time all by herself. We were even able to take her off Risperdal for the first time in 10 years. I cannot say the infusions have helped her OCD, though for her the only thing she is compulsive about is talking (non-stop). She does get obsessive thoughts in her head and it's hard for her not to think (or talk) about them.

 

We did have to stop the infusions after the third one due to an insurance problem and we saw about 40% of the symptoms come back slowly over a 3-month period. This was a bit disheartening, though I was warned about it. We started back up in February and she is back to where she was when she was at her best. She continues with the IVIG every 28 days and she has one or two minor motor tics but none of the vocalizations ever returned. She is holding very steady emotionally. I don't know how long she will have to continue the infusions but if it's for the rest of her life it will be worth it compared to where we were. At some point soon I may bring up plasmapheresis to her doctors. I would really like to find something that will help with the OCD. NAC is not helping. I do find that diet plays a big role though. For her, dyes and additives made the tics much worse. And, of course, stress plays a big role. I try to minimize the amount of stress in her life, but at 13 (as you know), that is really difficult!

 

We did see a neuroendocrinologist last year to test her hormonal levels so we could rule that out. Everything came back normal. However, I was told that many kids (particularly boys with ASD) have very high levels, which can really exacerbate their symptoms. May be something for you to check out.

 

Keep us posted on how you're doing.

 

Nancy

 

Hang in there Worried Dad. We're all rooting for you and your family.

 

Have you repeated Dr. Cunningham's blood levels since the last 2 IVIG's?

 

You might also check with NancyD as her dd is older and has had several IVIG's...she is seeing results but you'd have to check her posts (or ask her) as to how long it took to see an improvement.

[michele]

Worried DAD,

I pray things improve for your son soon. I am right there waiting for any sign of improvements with my son. It has been our worst exacerbation yet since June. I feel your sadness.

 

Nancy your daughters symptoms seem so familiar. I would love to talk to you about meds because we are having such trouble with moods and emotional dysregulation. I was wondering if you did steroids since my sons anger and agitation seem worse on them. Does your daughter have aspergers? I am not sure if this is true ASP or just PANDAS symptoms that resemble ASP. I am excited to get your book!

 

Michele

Hi Worried Dad,

 

I'm happy to talk with you any time you'd like. Hang in there with the IVIG -- and give it a little longer. My daughter is 13 and started her infusions last fall. We did not see any results until ~ the third infusion and what we saw was amazing. The rages and emotional dysregulation were gone, the tics about 90% gone, and she began sleeping through the night for the first time all by herself. We were even able to take her off Risperdal for the first time in 10 years. I cannot say the infusions have helped her OCD, though for her the only thing she is compulsive about is talking (non-stop). She does get obsessive thoughts in her head and it's hard for her not to think (or talk) about them.

 

We did have to stop the infusions after the third one due to an insurance problem and we saw about 40% of the symptoms come back slowly over a 3-month period. This was a bit disheartening, though I was warned about it. We started back up in February and she is back to where she was when she was at her best. She continues with the IVIG every 28 days and she has one or two minor motor tics but none of the vocalizations ever returned. She is holding very steady emotionally. I don't know how long she will have to continue the infusions but if it's for the rest of her life it will be worth it compared to where we were. At some point soon I may bring up plasmapheresis to her doctors. I would really like to find something that will help with the OCD. NAC is not helping. I do find that diet plays a big role though. For her, dyes and additives made the tics much worse. And, of course, stress plays a big role. I try to minimize the amount of stress in her life, but at 13 (as you know), that is really difficult!

 

We did see a neuroendocrinologist last year to test her hormonal levels so we could rule that out. Everything came back normal. However, I was told that many kids (particularly boys with ASD) have very high levels, which can really exacerbate their symptoms. May be something for you to check out.

 

Keep us posted on how you're doing.

 

Nancy

 

Hang in there Worried Dad. We're all rooting for you and your family.

 

Have you repeated Dr. Cunningham's blood levels since the last 2 IVIG's?

 

You might also check with NancyD as her dd is older and has had several IVIG's...she is seeing results but you'd have to check her posts (or ask her) as to how long it took to see an improvement.

[NancyD]

Hi Michele,

 

We have not done steroids. My daughter was diagnosed with mild-moderate PDD-NOS (not Asperger), though technically she is not considered to be on the autism spectrum anymore. Her primary issues are PANDAS-related, however she still misses some of the subtle social cues and she has auditory processing deficits. I am happy to talk with you any time. Just email me through the forum and we can schedule a time.

 

Nancy

 

Worried DAD,

I pray things improve for your son soon. I am right there waiting for any sign of improvements with my son. It has been our worst exacerbation yet since June. I feel your sadness.

 

Nancy your daughters symptoms seem so familiar. I would love to talk to you about meds because we are having such trouble with moods and emotional dysregulation. I was wondering if you did steroids since my sons anger and agitation seem worse on them. Does your daughter have aspergers? I am not sure if this is true ASP or just PANDAS symptoms that resemble ASP. I am excited to get your book!

 

Michele

Hi Worried Dad,

 

I'm happy to talk with you any time you'd like. Hang in there with the IVIG -- and give it a little longer. My daughter is 13 and started her infusions last fall. We did not see any results until ~ the third infusion and what we saw was amazing. The rages and emotional dysregulation were gone, the tics about 90% gone, and she began sleeping through the night for the first time all by herself. We were even able to take her off Risperdal for the first time in 10 years. I cannot say the infusions have helped her OCD, though for her the only thing she is compulsive about is talking (non-stop). She does get obsessive thoughts in her head and it's hard for her not to think (or talk) about them.

 

We did have to stop the infusions after the third one due to an insurance problem and we saw about 40% of the symptoms come back slowly over a 3-month period. This was a bit disheartening, though I was warned about it. We started back up in February and she is back to where she was when she was at her best. She continues with the IVIG every 28 days and she has one or two minor motor tics but none of the vocalizations ever returned. She is holding very steady emotionally. I don't know how long she will have to continue the infusions but if it's for the rest of her life it will be worth it compared to where we were. At some point soon I may bring up plasmapheresis to her doctors. I would really like to find something that will help with the OCD. NAC is not helping. I do find that diet plays a big role though. For her, dyes and additives made the tics much worse. And, of course, stress plays a big role. I try to minimize the amount of stress in her life, but at 13 (as you know), that is really difficult!

 

We did see a neuroendocrinologist last year to test her hormonal levels so we could rule that out. Everything came back normal. However, I was told that many kids (particularly boys with ASD) have very high levels, which can really exacerbate their symptoms. May be something for you to check out.

 

Keep us posted on how you're doing.

 

Nancy

 

Hang in there Worried Dad. We're all rooting for you and your family.

 

Have you repeated Dr. Cunningham's blood levels since the last 2 IVIG's?

 

You might also check with NancyD as her dd is older and has had several IVIG's...she is seeing results but you'd have to check her posts (or ask her) as to how long it took to see an improvement.