Update on Allie

[peglem]

First the background:

 

Allie is 15 yo- nonverbal, severe autism (believe that PANDAS and/or immune dysfunction caused all that). She has been suffering with this since about 1yo. Major symptom that interefered most w/ functioning and learning was severe Self injurious behaviors (head banging, biting hands mostly). Last summer we had the Cunningham test done on her- CamK=242, very high antiD2, this was during what we thought was not exacerbation, but we really have no idea what non-symptomatic looks like. At any rate she was not as crazy as she'd been and was on prophylactic zith, so we thought she was doing better.

September 1st, she tested + for strep. With that and the Cunningham results, was able to get the pediatrician to begin getting more aggressive w/ treatment. We saw a good response to 5 days of prednisone at the end of September, then had dental work and was cutting 4 molars at the beginning of Oct. October and November- no mistaking that she was in exacerbation! Finally, in December, pediatrician decided to try treatment to clear carrier state (10 days rifampin w/ high dose augmentin) and things began to turn around. Then she was placed on a higher dose of zith (500mg every other day, after 5 day "loading" dose). By January things had improved dramatically and we were seeing very little self-injury (maybe twice/week, but very brief even then) or aggression.

March 24th we finally had her 1st IVIG, but I was hesitant because the immuno would only give the standard dose to treat immune deficiency (which she has). We went ahead anyway...the first week saw slight increases in aggression and SIBs, but for the last 2 days she's been back to her pre-IVIG improvement levels. That's a relief, I was so worried we'd made things worse! She will be getting IVIG ,at this dosage level, every 3 weeks.

As I said, we don't really have any idea what "baseline" should look like, but right now, she's doing better than she has since about 2 or 3 years old, and I'm happy with her progress. Still not seeing an independent future for her, but this has made the difference between a certain institutionalized (and very drugged) adulthood and a future where she will probably be able to live in an assisted living setting. I have hope for her future for the 1st time in 10 years and I'm not afraid of that hope anymore. We feel hugely blessed!

[dut]

(got tears) so very, very glad for you that you are seeing improvements and a more hopeful future for your daughter. I've got the utmost respect for those parents whose kids are facing such difficult situations and yet keep going and do what needs to be done for their children.....

[thereishope]

You are one amazing Mother!

 

I am so happy you are seeing improvement. It's still early and you will probably see even more good things popping up. Keep us updated!

[tired mom]

First the background:

 

Allie is 15 yo- nonverbal, severe autism (believe that PANDAS and/or immune dysfunction caused all that). She has been suffering with this since about 1yo. Major symptom that interefered most w/ functioning and learning was severe Self injurious behaviors (head banging, biting hands mostly). Last summer we had the Cunningham test done on her- CamK=242, very high antiD2, this was during what we thought was not exacerbation, but we really have no idea what non-symptomatic looks like. At any rate she was not as crazy as she'd been and was on prophylactic zith, so we thought she was doing better.

September 1st, she tested + for strep. With that and the Cunningham results, was able to get the pediatrician to begin getting more aggressive w/ treatment. We saw a good response to 5 days of prednisone at the end of September, then had dental work and was cutting 4 molars at the beginning of Oct. October and November- no mistaking that she was in exacerbation! Finally, in December, pediatrician decided to try treatment to clear carrier state (10 days rifampin w/ high dose augmentin) and things began to turn around. Then she was placed on a higher dose of zith (500mg every other day, after 5 day "loading" dose). By January things had improved dramatically and we were seeing very little self-injury (maybe twice/week, but very brief even then) or aggression.

March 24th we finally had her 1st IVIG, but I was hesitant because the immuno would only give the standard dose to treat immune deficiency (which she has). We went ahead anyway...the first week saw slight increases in aggression and SIBs, but for the last 2 days she's been back to her pre-IVIG improvement levels. That's a relief, I was so worried we'd made things worse! She will be getting IVIG ,at this dosage level, every 3 weeks.

As I said, we don't really have any idea what "baseline" should look like, but right now, she's doing better than she has since about 2 or 3 years old, and I'm happy with her progress. Still not seeing an independent future for her, but this has made the difference between a certain institutionalized (and very drugged) adulthood and a future where she will probably be able to live in an assisted living setting. I have hope for her future for the 1st time in 10 years and I'm not afraid of that hope anymore. We feel hugely blessed!

I am happy for you too! I hope you will continue to be blessed and so glad hope has gotten back into your heart. God Bless..

[Megs_Mom]

(tears too). I'm so happy for you and for Allie. What wonderful news.

 

You make me remember all that we have to be thankful for and why hope is so important for us all.

 

Hoping for more good things for you all.

[justinekno]

What great news. I'm so happy for you and Allie.

Edited April 2, 2010 by justinekno

[Fixit]

Great news....you get my vote for mom of the year!!! or maybe 2 years!!!

 

were you part of the party committee once all these illnesses get recognized....if not you join if you want to

 

First the background:

 

Allie is 15 yo- nonverbal, severe autism (believe that PANDAS and/or immune dysfunction caused all that). She has been suffering with this since about 1yo. Major symptom that interefered most w/ functioning and learning was severe Self injurious behaviors (head banging, biting hands mostly). Last summer we had the Cunningham test done on her- CamK=242, very high antiD2, this was during what we thought was not exacerbation, but we really have no idea what non-symptomatic looks like. At any rate she was not as crazy as she'd been and was on prophylactic zith, so we thought she was doing better.

September 1st, she tested + for strep. With that and the Cunningham results, was able to get the pediatrician to begin getting more aggressive w/ treatment. We saw a good response to 5 days of prednisone at the end of September, then had dental work and was cutting 4 molars at the beginning of Oct. October and November- no mistaking that she was in exacerbation! Finally, in December, pediatrician decided to try treatment to clear carrier state (10 days rifampin w/ high dose augmentin) and things began to turn around. Then she was placed on a higher dose of zith (500mg every other day, after 5 day "loading" dose). By January things had improved dramatically and we were seeing very little self-injury (maybe twice/week, but very brief even then) or aggression.

March 24th we finally had her 1st IVIG, but I was hesitant because the immuno would only give the standard dose to treat immune deficiency (which she has). We went ahead anyway...the first week saw slight increases in aggression and SIBs, but for the last 2 days she's been back to her pre-IVIG improvement levels. That's a relief, I was so worried we'd made things worse! She will be getting IVIG ,at this dosage level, every 3 weeks.

As I said, we don't really have any idea what "baseline" should look like, but right now, she's doing better than she has since about 2 or 3 years old, and I'm happy with her progress. Still not seeing an independent future for her, but this has made the difference between a certain institutionalized (and very drugged) adulthood and a future where she will probably be able to live in an assisted living setting. I have hope for her future for the 1st time in 10 years and I'm not afraid of that hope anymore. We feel hugely blessed!

[KeithandElizabeth]

What wonderful news!!! You have worked so hard and for so long for your daughter. I have watched your struggle since I began reading this forum and I am so happy for your family.

 

Elizabeth

[MomWithOCDSon]

That is fabulous news! I continue to be amazed by the moms like you on this forum who persevere and remain strong and never say "Never!" when it comes to finding good answers for helping their kids be the best they possibly can! Not to be cliche, but it really is awe-inspiring!

[melanie]

OMG!!!!! SOOO happy Peg..I feel like Ive known Allie forever.Im very happy to hear that things are going well you deserve this and so does your daughter.

 

melanie

[mama2alex]

This is SO good to hear!! I am so happy for you and Allie. You are an incredible mom. I second the "Mom of the Year" motion!

 

Jennifer

[peglem]

Thanks for all the hurrahs and pats on the back!

But, I don't see myself as a supermom at all. I'm pretty much the same as you all are...just trying to get my kid what she needs. There have been an incredible lot of failures, gave up many times. In the end, more than anything, God has sent what was needed at the right time. Online support from other parents and a wonderful pediatrician (our angel). Allie's siblings (all older than her) are great and this last year especially, hub has been terrific as well. You know, nobody can do this all by themselves- though I did try that for awhile as well. (hence the failures and giving ups!)

[momto2pandas]

Thank you for sharing! I am so glad for Allie and for you. It's always so great, so inspiring, to hear of the breakthroughs after all of the trials and errors.

 

 

 

Thanks for all the hurrahs and pats on the back!

But, I don't see myself as a supermom at all. I'm pretty much the same as you all are...just trying to get my kid what she needs. There have been an incredible lot of failures, gave up many times. In the end, more than anything, God has sent what was needed at the right time. Online support from other parents and a wonderful pediatrician (our angel). Allie's siblings (all older than her) are great and this last year especially, hub has been terrific as well. You know, nobody can do this all by themselves- though I did try that for awhile as well. (hence the failures and giving ups!)

[EAMom]

I'm keeping my fingers crossed for continued improvement. You both deserve it!

[Stephanie2]

Hi Peglem,

 

After reading your post I was wondering if you have ever gone down the road of DAN with Allie? I don't really know your history, except that she has autism and pandas, so I am sorry if this has been discussed already. I don't mean to be a nosy mom, but there is so much that can be done for kids with autism beyond treating their pandas.

 

I have both of my kids with a DAN doctor (Scott Smith, PA who is with the Bradstreet group in Melbourne, FL). The DAN approach is what lead us to the dx of pandas in both of my boys. Without it I would still be spinning my wheels with two very wild boys on my hands (2 and 5 yo).

 

Anyway, I would say we started losing my youngest by the age of 4 months and by 12 months the pediatrician and I were really scared. I got him into the DAN protocol immediately ( and DC'd vaccines of course) and he turned around very rapidly (something to be said for early intervention here). One year later he has NO signs of autism but is still speech delayed and has pandas, but is doing ok on antibiotics.

 

As for my 5 yo, he was always a borderline kid with signs of autism. I think PANDAS is what pushes him on and off the spectrum. We have yet to get control of his pandas, but we just started IVIG, so I am hopeful. He used to have quite an auditory processing problem with stuttering and that is 100% gone due to Methyl B12 shots that I give him every 1-3 nights.

 

So, we still have a ways to go with my kids, but we have seen very steady gains with this protocol.

 

Anyway, when I was at our DAN office yesterday for my son's first IVIG tx, I asked Scott (who also has two pandas/autistic boys, one of which is fully recovered from autism)if they had many older kids/adults in the practice and he said they have quite a few. He told me that the most astounding day of his life was when he treated a 32 year old man with "secretin" and as soon as the first treatment was done he looked at his mom and said "thanks, mom". He said those were his very first words ever and they were spoken as clear as day!

 

I'm sure you have heard/considered this many times in your journey, but couldn't help putting in my 2 cents!

 

Stephanie