15 weeks post ivig

[sf_mom]

Coco,

 

Congratulations on finding your daughter the right treatment and her current successes!!!!!! I absolutely think you should move forward with the monthly IVIG. I have an e-mail into Dr. K this morning regarding the topic of immunological deficiencies and potential further IVIG treatment. I just know you'll see great success. How old is your daughter now?

 

-Wendy

 

Hi Coco:

 

Good question. Our son was given Gammaguard (spelling?) for his first IVIG at Dr. K's dose, but with a local doctor and he did not have any symptoms. He is having his second IVIG, at a much lower dose, this Tuesday and will be given Gamuenex. I will let you know if we see any difference.

 

How is your daughter doing now? Do you mind if I ask what immunological deficiencies your daughter has?

 

Elizabeth

Hi Elizabeth,

 

We are seeing good progress since our first two-day ivig treatment with Dr. K. We are at the 8-week mark right now. The healing has been sawtooth. There are up days and down days, but the ups are longer and the downs are shorter. Tics and OCD are now about 50% better. Let me share a little history before I continue with recovery stuff:

 

My daughter was diagnosed with pddnos at age 5, after many doctors couldn't really come up with a diagnosis that was solid. We were uncomfortable with that but had no choice at that point. According to Dr. K. and her immunologist we realize now that she most likely has had pandas since she was 2 years old. She had many ear infections as a toddler, but was never tested for strep. Ever. In her case, the "sudden onset" was failure to hit developmental milestones...not terribly obvious, but subtle things that we would notice. She also developed what we now know were OCD tendencies, i.e., could not walk on mats, had trouble running straight across asphalt as it changed to concrete (color difference) and she carried a little red lego with her wherever we went...for years. I had red legos in the car glovebox, in my purse, coat pockets...you get the picture. She also failed to develop fine motor skills very well and her language was behind. She was fearful/panicked over the strangest things, pegboard holes behind supermarket shelving, men with beards, etc. Very sensitive to noise. She was also diagnosed with mild MR, which we feel was not true either. Outside of standard testing she was bright and quick in so many other areas, but alas, that's not taken into anyone's consideration. She was also very connected to people and had great eye contact.

 

In the past three years the OCD became more and more debilitating. Tics stronger and longer. Family life was falling apart. This child of mine was turning into a person I did not know. If pandas has not come come along we were headed for psycho drugs and who knows what else.

 

So, here is a little girl that has had pandas for most of her little life. The big mystery here is does ivig work as well for kids who have had it for 7 years? How far can we bring her back? Are the learning disabilities related to all the malfuntioning in the basal ganglia? I asked Dr. K. where does the PDDnos stop and the Pandas start, symptom wise? He told me: "You tell me!" He believes that all this pddnos garbage is all pandas, to a great degree.

 

A year and a half ago she was hospitalized for a URI. Given heavy IV antibiotics for 3 days in hospital. When she came home, it was unbelievable. ALL sypmtoms were gone for several months. School could not believe the change in this girl. Learning concepts were being introduced and mastered in a week, which used to takes months. That was a good run for all of us. Then she got another infection, and bam, right back where we were. No one in the hospital ever did a strep test. No one mentioned Pandas. Her pediatrician wanted to put her on depakote....I revolted. Some of these doctors truly do not know what they are talking about.

 

Some numbers: Her CamK was 188. Her DNASE was 965. Her ASO titer was 295. She failed 13 or the 14 pneumo strep 14. She failed the tetnus and is borderline fail on Lyme's. Her IGG subclasses were passing 1 and 3, failing 2 and 4. Her immunologist diagnosed her with SAID, "Specific Antibody Immune Deficiency" and recommends ivig monthly for at least 6 -12 months.

 

Dr. K. wants us to wait for another month before trying another ivig. Our immuno says if it was his daughter he would do it now. We feel like we have wasted enough time already and are scheduled for this wednesday to do another treatment. we finally got insurance to cover so I think we would be foolish not to go ahead.

 

Sorry for the l-o-n-g post...believe me I could go on forever We saw Dr. Leckman at Yale, and her referred us to our immuno, who is a livesaver. you guys gave me Dr. K!!! I feel like I should put this on a separate thread because I am so interested in communicating with parents who have a child with a similar diagnosis.

 

I did chat with one gal whose daughter was the same as mine and is now FULLY RECOVERED, she did her ivig with Gupta. But, sadly, I have not heard from her in a while.

 

YOU PARENTS have been a Godsend to us! I owe all my knowledge and awareness to each of you!!!

 

hugs to each of you,

coco

 

P.S. Her handwriting is now AWESOME and she always had horrible handwriting. That in and of itself is a miracle!!

[KeithandElizabeth]

Hi Coco:

 

I had chills reading your story! I am so happy that you are now getting the right treatment. I feel crazed when I think of how many kids are misdiagnosed and are horribly suffering.

 

We were so torn between doing just the one dose of Dr. K's IVIG, which we did on Sept 1st, and doing the 6 months of IVIG. We have finally decided to do the 6 months. We are currently at 6 weeks post our first IVIG and I would say our son is 60% better. He was pretty debilitated before the first IVIG with such severe anxiety and OCD that we could not leave the house or go to school. We were once this social family who became so alienated from our friends and community.

 

Who is your immunologist? Is he in Connecticut? I know Dr. Leckman often refers to an immunologist in Connecticut.

 

Thank you for sharing your story. I, too, feel that I could talk forever about all of this.

 

Let us know how your second IVIG goes!!!

 

Elizabeth

[coco]

Coco,

 

Congratulations on finding your daughter the right treatment and her current successes!!!!!! I absolutely think you should move forward with the monthly IVIG. I have an e-mail into Dr. K this morning regarding the topic of immunological deficiencies and potential further IVIG treatment. I just know you'll see great success. How old is your daughter now?

 

-Wendy

 

Hi Coco:

 

Good question. Our son was given Gammaguard (spelling?) for his first IVIG at Dr. K's dose, but with a local doctor and he did not have any symptoms. He is having his second IVIG, at a much lower dose, this Tuesday and will be given Gamuenex. I will let you know if we see any difference.

 

How is your daughter doing now? Do you mind if I ask what immunological deficiencies your daughter has?

 

Elizabeth

Hi Elizabeth,

 

We are seeing good progress since our first two-day ivig treatment with Dr. K. We are at the 8-week mark right now. The healing has been sawtooth. There are up days and down days, but the ups are longer and the downs are shorter. Tics and OCD are now about 50% better. Let me share a little history before I continue with recovery stuff:

 

My daughter was diagnosed with pddnos at age 5, after many doctors couldn't really come up with a diagnosis that was solid. We were uncomfortable with that but had no choice at that point. According to Dr. K. and her immunologist we realize now that she most likely has had pandas since she was 2 years old. She had many ear infections as a toddler, but was never tested for strep. Ever. In her case, the "sudden onset" was failure to hit developmental milestones...not terribly obvious, but subtle things that we would notice. She also developed what we now know were OCD tendencies, i.e., could not walk on mats, had trouble running straight across asphalt as it changed to concrete (color difference) and she carried a little red lego with her wherever we went...for years. I had red legos in the car glovebox, in my purse, coat pockets...you get the picture. She also failed to develop fine motor skills very well and her language was behind. She was fearful/panicked over the strangest things, pegboard holes behind supermarket shelving, men with beards, etc. Very sensitive to noise. She was also diagnosed with mild MR, which we feel was not true either. Outside of standard testing she was bright and quick in so many other areas, but alas, that's not taken into anyone's consideration. She was also very connected to people and had great eye contact.

 

In the past three years the OCD became more and more debilitating. Tics stronger and longer. Family life was falling apart. This child of mine was turning into a person I did not know. If pandas has not come come along we were headed for psycho drugs and who knows what else.

 

So, here is a little girl that has had pandas for most of her little life. The big mystery here is does ivig work as well for kids who have had it for 7 years? How far can we bring her back? Are the learning disabilities related to all the malfuntioning in the basal ganglia? I asked Dr. K. where does the PDDnos stop and the Pandas start, symptom wise? He told me: "You tell me!" He believes that all this pddnos garbage is all pandas, to a great degree.

 

A year and a half ago she was hospitalized for a URI. Given heavy IV antibiotics for 3 days in hospital. When she came home, it was unbelievable. ALL sypmtoms were gone for several months. School could not believe the change in this girl. Learning concepts were being introduced and mastered in a week, which used to takes months. That was a good run for all of us. Then she got another infection, and bam, right back where we were. No one in the hospital ever did a strep test. No one mentioned Pandas. Her pediatrician wanted to put her on depakote....I revolted. Some of these doctors truly do not know what they are talking about.

 

Some numbers: Her CamK was 188. Her DNASE was 965. Her ASO titer was 295. She failed 13 or the 14 pneumo strep 14. She failed the tetnus and is borderline fail on Lyme's. Her IGG subclasses were passing 1 and 3, failing 2 and 4. Her immunologist diagnosed her with SAID, "Specific Antibody Immune Deficiency" and recommends ivig monthly for at least 6 -12 months.

 

Dr. K. wants us to wait for another month before trying another ivig. Our immuno says if it was his daughter he would do it now. We feel like we have wasted enough time already and are scheduled for this wednesday to do another treatment. we finally got insurance to cover so I think we would be foolish not to go ahead.

 

Sorry for the l-o-n-g post...believe me I could go on forever We saw Dr. Leckman at Yale, and her referred us to our immuno, who is a livesaver. you guys gave me Dr. K!!! I feel like I should put this on a separate thread because I am so interested in communicating with parents who have a child with a similar diagnosis.

 

I did chat with one gal whose daughter was the same as mine and is now FULLY RECOVERED, she did her ivig with Gupta. But, sadly, I have not heard from her in a while.

 

YOU PARENTS have been a Godsend to us! I owe all my knowledge and awareness to each of you!!!

 

hugs to each of you,

coco

 

P.S. Her handwriting is now AWESOME and she always had horrible handwriting. That in and of itself is a miracle!!

My daughter is 9. Thanks for the vote of confidence in doing it again on Weds. I feel like sticking a line in her myself!! Right now!! Believe me, if I could, I would! I don't know if Dr. K is all that familiar with the immunology side of this...and I mean no disrespect, but it's just not what he does primarily. I think he mostly deals with kids who have been developing normally until age 5, 7, 8...whatever, and then get the sudden onset. In our case, it's a different sotry, and we feel he immuno system was compromised a long time ago, and we gotta get that fixed.

[peglem]

CoCo,

 

My daughter is 15, severely autistic and I too think all this misery and loss of development is PANDAS. The chaos in the basal ganglia impaired her ability to make sense out of things, recognize patterns in language and social/emotional areas, develop fine motor coordination...she made some developmental gains along the way, only to have them lost later...No speech anymore, crippling OCD and associated anxiety.

 

We hopefully will be getting IVIG soon and I hope that we'll be able to redevelop some function once the chaos is reduced.

[KeithandElizabeth]

My heart goes out to you peglem!!!!

 

Elizabeth

[coco]

CoCo,

 

My daughter is 15, severely autistic and I too think all this misery and loss of development is PANDAS. The chaos in the basal ganglia impaired her ability to make sense out of things, recognize patterns in language and social/emotional areas, develop fine motor coordination...she made some developmental gains along the way, only to have them lost later...No speech anymore, crippling OCD and associated anxiety.

 

We hopefully will be getting IVIG soon and I hope that we'll be able to redevelop some function once the chaos is reduced.

Peglem,

 

You hang in there. I know how strong and broken we are at the same time. I am seeing HEALING before my eyes and she is 9. I hold out hope for each and every one of our kids. Get that ivig and I know that it will get better. BIG HUG to you!

 

Our immunologist is Dr. Denis Bouboulis in Darien, CT. Dr. Leckman referred us to him for local follow-up. Dr. B. and Dr. K have consulted with each other. Most importantly, Dr. B is open to reading and learning from the parents and his ego is left outside. He responds to emails and calls you without ever making you feel rushed, stupid, or annoyed.

 

Additionally, we spoke to him about PEX vs. ivig. His opinion, PEX is much like "dialysis" -- removing and cleaning all the blood. He feel that you would still need to do ivig post pex for a period of time, because it does not build up the immune system. I hope I am phrasing that correctly.

 

Coco

[peglem]

CoCo,

 

My daughter is 15, severely autistic and I too think all this misery and loss of development is PANDAS. The chaos in the basal ganglia impaired her ability to make sense out of things, recognize patterns in language and social/emotional areas, develop fine motor coordination...she made some developmental gains along the way, only to have them lost later...No speech anymore, crippling OCD and associated anxiety.

 

We hopefully will be getting IVIG soon and I hope that we'll be able to redevelop some function once the chaos is reduced.

Peglem,

 

You hang in there. I know how strong and broken we are at the same time. I am seeing HEALING before my eyes and she is 9. I hold out hope for each and every one of our kids. Get that ivig and I know that it will get better. BIG HUG to you!

 

Our immunologist is Dr. Denis Bouboulis in Darien, CT. Dr. Leckman referred us to him for local follow-up. Dr. B. and Dr. K have consulted with each other. Most importantly, Dr. B is open to reading and learning from the parents and his ego is left outside. He responds to emails and calls you without ever making you feel rushed, stupid, or annoyed.

 

Additionally, we spoke to him about PEX vs. ivig. His opinion, PEX is much like "dialysis" -- removing and cleaning all the blood. He feel that you would still need to do ivig post pex for a period of time, because it does not build up the immune system. I hope I am phrasing that correctly.

 

Coco

 

Thanks, the most horrible thing is that once she got the autism dx, doctors acted as though that explained everything, thought I was in denial @ her dx when I wanted things investigated. Now that we finally know what it is- well, there's a lot of anguish for me that her entire childhood was lost to this. My new mantra is AUTISM IS NOT A DIAGNOSIS!!!! It is symptoms of something, not necessarily PANDAS, but objectively, its just a description of behaviors (or lack of them) that psychiatrists got together and decided to call a disorder of unknown origin!

Anyway, I finally have some real hope that we'll be able to do things that will help her...

[coco]

CoCo,

 

My daughter is 15, severely autistic and I too think all this misery and loss of development is PANDAS. The chaos in the basal ganglia impaired her ability to make sense out of things, recognize patterns in language and social/emotional areas, develop fine motor coordination...she made some developmental gains along the way, only to have them lost later...No speech anymore, crippling OCD and associated anxiety.

 

We hopefully will be getting IVIG soon and I hope that we'll be able to redevelop some function once the chaos is reduced.

Peglem,

 

You hang in there. I know how strong and broken we are at the same time. I am seeing HEALING before my eyes and she is 9. I hold out hope for each and every one of our kids. Get that ivig and I know that it will get better. BIG HUG to you!

 

Our immunologist is Dr. Denis Bouboulis in Darien, CT. Dr. Leckman referred us to him for local follow-up. Dr. B. and Dr. K have consulted with each other. Most importantly, Dr. B is open to reading and learning from the parents and his ego is left outside. He responds to emails and calls you without ever making you feel rushed, stupid, or annoyed.

 

Additionally, we spoke to him about PEX vs. ivig. His opinion, PEX is much like "dialysis" -- removing and cleaning all the blood. He feel that you would still need to do ivig post pex for a period of time, because it does not build up the immune system. I hope I am phrasing that correctly.

 

Coco

 

Thanks, the most horrible thing is that once she got the autism dx, doctors acted as though that explained everything, thought I was in denial @ her dx when I wanted things investigated. Now that we finally know what it is- well, there's a lot of anguish for me that her entire childhood was lost to this. My new mantra is AUTISM IS NOT A DIAGNOSIS!!!! It is symptoms of something, not necessarily PANDAS, but objectively, its just a description of behaviors (or lack of them) that psychiatrists got together and decided to call a disorder of unknown origin!

Anyway, I finally have some real hope that we'll be able to do things that will help her...

Peglem,

 

I can tell you that about one week post ivig, my daughter's launguage popped....longer sentences, bigger thoughts articulated, more back and forth on topic conversation...we were shocked to hear some of the things that she said. Ex. at dinner my husband asked her if she wanted more cranberry sauce and instead of the usual yes or no, she replied, "No, but thanks for asking!" I am encouraged and I agree wholheartedly with your prior statements. I feel like shouting to every parent, DON'T SETTLE FOR THAT ANSWER!!

 

coco

[EAMom]

I don't know.

 

My dd had typical flu like symptoms for 2 days post IVIG. .we kept up the tylenol, benedryl during that time.

 

I don't know if Gammugard would be better. I vaguely remember someone on this forum had gammaguard and the side effects were pretty bad.

 

What does the immunologist think?

[EAMom]

Coco...is your dd on antibiotics? I hope so. What one?

[sf_mom]

Again, I think you are ABSOLUTELY heading down the right path for your daughter especially if she is 9. I understand your perspective, regarding Dr. K..... I think he has been treating, treating, treating and not paying much attention to the immunological side of things. AND, of course the immunological deficiencies in the STREP PNEUMOCOCCAL ANTIBODY TITER is a fairly new but consistent link that he is unclear about at this time. I am actively pursuing monthly IVIG until ALL symptoms subside, immune system is boosted and PANDAS is a distant memory. I would say that 'sudden on-set' is less likely the case or first exposure. Our son was exposed to Scarlet Fever, got really, really sick and went untreated..... six months later he got his first TIC of a cough/clearing of throat (delayed response and potential re-exposure to strep similar to SC) that we were never able to eradicate fully. Almost exactly one year later from start of cough we had our first full blown episode of TICs/mild OCD or as some would say a 'sudden on-set' from strep throat.

 

You made me laugh about sticking a line in her arm today if you could. I know the feeling..... OUR KIDS DON'T NEED TO BE THIS WAY, THEY ARE JUST SICK. THERE IS A TREATMENT THAT IS WORKING!!!!!!!! Some may need more help then others........ BUT I WANT TO SCREAM IN FRUSTRATION 'JUST HELP'

 

-Wendy

 

 

My daughter is 9. Thanks for the vote of confidence in doing it again on Weds. I feel like sticking a line in her myself!! Right now!! Believe me, if I could, I would! I don't know if Dr. K is all that familiar with the immunology side of this...and I mean no disrespect, but it's just not what he does primarily. I think he mostly deals with kids who have been developing normally until age 5, 7, 8...whatever, and then get the sudden onset. In our case, it's a different sotry, and we feel he immuno system was compromised a long time ago, and we gotta get that fixed.

[Worried_Dad]

Hi, Greeneyes:

 

I believe Dr. K's folks at OBSC used dextrose solution before and to flush after Ig? Not positive about that, though....

 

 

EAmom, yes Dr K uses Gamunex. What does that mean it is not compatible with saline? Is there another substance they hydrate with via IV? Maybe I got it wrong, Worried Dad, do you know? You did it with Dr. K. too. All I know is that before and after the infusion they gave him fluids via the IV (a bag before and after) to hydrate him. Dr K said it was because the better hydrated he was, the lower the likelyhood of headaches as a side effect. I'm not in the medical field, so maybe it was something else...but now you have me worried...but Dr. K has been doing this nine or ten years, I would have to think he would know that.....oh my....

[melanie]

CoCo,

 

My daughter is 15, severely autistic and I too think all this misery and loss of development is PANDAS. The chaos in the basal ganglia impaired her ability to make sense out of things, recognize patterns in language and social/emotional areas, develop fine motor coordination...she made some developmental gains along the way, only to have them lost later...No speech anymore, crippling OCD and associated anxiety.

 

We hopefully will be getting IVIG soon and I hope that we'll be able to redevelop some function once the chaos is reduced.

Peglem,

 

You hang in there. I know how strong and broken we are at the same time. I am seeing HEALING before my eyes and she is 9. I hold out hope for each and every one of our kids. Get that ivig and I know that it will get better. BIG HUG to you!

 

Our immunologist is Dr. Denis Bouboulis in Darien, CT. Dr. Leckman referred us to him for local follow-up. Dr. B. and Dr. K have consulted with each other. Most importantly, Dr. B is open to reading and learning from the parents and his ego is left outside. He responds to emails and calls you without ever making you feel rushed, stupid, or annoyed.

 

Additionally, we spoke to him about PEX vs. ivig. His opinion, PEX is much like "dialysis" -- removing and cleaning all the blood. He feel that you would still need to do ivig post pex for a period of time, because it does not build up the immune system. I hope I am phrasing that correctly.

 

Coco

 

Thanks, the most horrible thing is that once she got the autism dx, doctors acted as though that explained everything, thought I was in denial @ her dx when I wanted things investigated. Now that we finally know what it is- well, there's a lot of anguish for me that her entire childhood was lost to this. My new mantra is AUTISM IS NOT A DIAGNOSIS!!!! It is symptoms of something, not necessarily PANDAS, but objectively, its just a description of behaviors (or lack of them) that psychiatrists got together and decided to call a disorder of unknown origin!

Anyway, I finally have some real hope that we'll be able to do things that will help her...

Peglem,

 

I can tell you that about one week post ivig, my daughter's launguage popped....longer sentences, bigger thoughts articulated, more back and forth on topic conversation...we were shocked to hear some of the things that she said. Ex. at dinner my husband asked her if she wanted more cranberry sauce and instead of the usual yes or no, she replied, "No, but thanks for asking!" I am encouraged and I agree wholheartedly with your prior statements. I feel like shouting to every parent, DON'T SETTLE FOR THAT ANSWER!!

 

coco

 

 

I agree we saw the same results with s=danny

[coco]

Coco...is your dd on antibiotics? I hope so. What one?

 

yes, she is on 500 mg of Azithro. Dr. K. had her on 250 mg of Augmentin, but our immuno switched it about 4 weeks ago.

[coco]

I don't know.

 

My dd had typical flu like symptoms for 2 days post IVIG. .we kept up the tylenol, benedryl during that time.

 

I don't know if Gammugard would be better. I vaguely remember someone on this forum had gammaguard and the side effects were pretty bad.

 

What does the immunologist think?

 

 

I will speak with him tomorrow. I know he uses Gammagard, but at our last visit with Dr. K. I told him we used Gamunex and would like to stick with it (like I know what I'm talking about!!)