coco

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

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.

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 age nine did ivig w/Dr K in August. Day one was fine, end of day 2, bad headache, vomiting, slight fever, all lasting about 6 hours. Then, one week later the same symptoms, again lasting 6 hours or so. In the meantime we have discovered my daughter has SAID and will be receiving ivig locally starting this month. This immuno uses gammagard. Given that my daughter had the above symptoms with Gamunex, I'm not sure if I should request the same stuff or feel ok to switch??