momtocole1

I have posted quite a bit in the past. In this post I would like to ask for help. My son Ryan who has had PANDAS since he was 7 years old is doing better overall. He has had two IVIG's. He still has some tics and OCD but they are minimal. Anxiety is present at times but is managed much better. He is on prophylactic Zith. His biggest challenge is social skills due to years of lost development due to this illness. Where I am asking for help is I am wondering if anyone can recommend an attorney in the Southern California area. I am going through a very difficult divorce. PANDAS had a lot to do with the disintigration of my 14 year marriage. The money that we have spent trying to diagnose, treat and get services for help with this disease destroyed us emotionally, physically and financially. My husband took a turn this week and started sending emails threatening to take my car away, he closed of access to our bank account, and cancelled all behaviorial social skills services for both my sons with no notice. I also have a little boy 8 years old with Down syndrome and I am homeschooling both boys. This is a definate cry for help. I need to find an attorney that will allow me to make payments. My personal email is: judymendoza@me.com, if anyone has any information that could help. Thank you...

Please watch 20/20 tonight on ABC at 10:00 p.m. PST. I'm not sure what time it is on in other states. I'm in California. 20/20 was at our home back in April filming for 4 days. I chose to use medical marijuana as part of my sons treatment for OCD and anxiety due to PANDAS. He has also had two IVIG's over the last 6 months. Medcial marijuana has been just a component in his healing process, a tool in my toolbox to treat his extreme anxiety and panic attacks while we aggressively are working to stop the autoimmune reaction going on in his body. I was willing to put my son on 20/20 because not only did I want to get the word out about PANDAS. I thought if I can inspire even one parent to consider this alternative treatment for their child (in the states where it is legal) and they find relief from it, then that is a beautiful thing. I want to take away the stigma of this natural medicine. I have formed a group of Mom's that are doing this for their special needs children under a doctor's supervision. I have doctor's from some very well known local medical facilities that are seeking out this alternative treatment for their patients with special needs. It is a beautiful day, change is coming... Wish me luck.... I tried anti-psychotic drugs, I tried SSRI's for my son and they did not work.

Hello, I wanted to take a poll to see who on the forum has received IVIG services from Coram Infusion Services. They are a division of Apria Healthcare. They are nationwide and they did my son's 2nd IVIG for 1/4 of the cost that we had to pay at Denver Children's Hospital. Could people let me know if they have used them, if they are going to use them? I spoke to one of the sales reps for the company, Colin Ruepelle, and I am going to negotiate with him to see if he could offer an additional discount to PANDAS families or possibly set up some type of a grant program, for families that are struggling and cannot get IVIG covered. Has anyone been able to get it covered? He told me that one family in either New Mexico or Arizona? Was able to get it covered by CIGNA. I thought that is wonderful.... My son is doing very well after second IVIG. He still continues to struggle with OCD, but he is 80% better. Not raging like he was. He was competely incapacitated before the IVIG's. Still on high dose Zith 500 mg. He has lost 10 pounds too... He is 12. Thank you, Judy...

I can't remember exact dose but us was Dr k"s, I think it is posted on his website. Brand was Gamunex Wonderful!! Now the qestions... What dosage 2 gr per? What is the type of IVIG? Name?/ Thanks Melanie

I wanted to let everyone know that I found an amazing company that did my son's second IVIG. They are called Coram Healthcare. They have 75 locations across the US. They are infusion centers. Here is the link: http://www.coramhc.com/Map/Default.aspx phone number: 800-423-1411 Just to give you an idea on cost: When I went to Denver to the Center for Cancer and Blood Disorders to get my son's first IVIG, it was $42,000 on paper (what they billed Blue Shield of Calif.) I had a $3,600 deductible which was already met so they paid $31,000 of that submitted bill and the doctor took that as payment in full. Now, for my son's second IVIG (he is 130 pounds, 12 years old). The cost was $8,000 at Coram. I was fortuante to have a pediatrician that understands PANDAS (his son has it) and was willing to write up the orders and referred me to Coram Infusion services. My ped. used Dr. Kovacevic's protocol. I can't believe it was 80% less! Just wanted to share this with all of you... This could mean the difference between someone getting IVIG or not getting it, in this economy especially... I hope this helps these poor suffering kids and families...

I know that is a heavy topic, but I need to hear this. I just posted a little bit ago about my son's post IVIG rages. It helps so much to know that I'm not alone. Please tell me about the worst situations, about when those of you wanted to take your child to a hospital, about when you thought they might not get through it or you might not. Thank you...

Yes we are using Motrin. Dr. is not really experienced in PANDAS. I am going to set up another phone consult tomorrow with Dr. Kovasevic in Chicago. Thank you,

My son 12 years old had his 2nd full dose (Dr. K dose) IVIG this past Wednesday and Thursday of this past week. We are 72 hours out and he is flipping out beyond belief. Threatening suicide, screaming crying, saying he can't take it anymore. Hitting himself in the head. He got out on his balcony and said he wants to jump but said he is too afraid to die that he will go to ######. He also has periods where he is very happy and even though the OCD is there, he is playing and having fun. I am so scared. I don't want to take him to the hospital, but I will if I truly feel that he is trying to hurt himself. He tried to run away and ran up the street in bare feet and I had to chase him down in the car. If he wasn't having periods of calmness and happiness, I would think it was a psychotic break. Please share your stories about post IVIG. He has also had 3 nose bleeds today, from the crying? 5 minutes ago he was on his balcony, saying he was going to jump. Now he is curled up watching TV with his sister, laughing. I know this is an extreme case. He did so well after the last IVIG, it was bumpy, but he got progressively betterover a 2 1/2 month period and then a total backslide. We even almost had him back to school. Please help,

My son had IVIG 36 days ago. There are so many wonderful things that are happening, but so many troubing things too. I remember some people posting about difficulties about a month after IVIG. Can those of you that so a big dip around 30 days please share your experiences. The good things that are happening is that my son is reaching out to friends. He does not have too many any more, but he wants to reach out to the ones that he still has. He is feeling so much of the OCD going away that it is like he doesn't know how to live without it because it has consumed his life for so long. He is longing for a connection with others which is such a great sign. He is still struggling quite a bit with slepp. The OCD seems to be getting more intense right now, he is crying out a lot, but the main difference is that he is able to tolerate me working through some of the OCD with him now. Whereas before that was completly impossible. Does that make sense? Please share your thoughts... Thanks...

One of the most difficult things that my son is going through is issues with sleep. Prior to IVIG (30 days ago) he was having trouble settling down to go to sleep, but he would get to bed at 10:00 or 11:00 vs. 8:00 or 9:00, so I went with it. Since having the IVIG he is literally up the whole night. He can't go to sleep until about 4:00 a.m. Because he is so exhausted I don't want to wake him up the next morning. I know this seems completely crazy, but I am just letting this happen because of his healing process. His OCD symptoms are so much less than they were. I really am able to P U S H him gently through some of the OCD rituals that continue to bombard him. I have tried so many things to help him sleep, Tryptophan, Tylenol PM, Advil PM, Ativan, Calcium/Magnesium. What concerns me is that even on the mornings that I wake up early (normal wake up time for other kids), he still cannot get to sleep at a decent hour. Any suggestions would be appreciated so much! Thanks,

I feel so bad that I have not been on the forum. I have been going through some type post traumatic stress stuff I think! My family and friends have been very concerned that there is something really wrong with me. I really am fine though, just pulling in and really focusing on my son's healing process. It has been 30 days since the IVIG. We have definately seen the "sawtooth" recovery pattern. I will start with the not so good, so I can end with the really good: Old OCD behaviors are cycling back in. They go out as fast as they come in. The hard part is that my son, really has trouble understanding this, so he gets scared. He does not know what is going to hit him next. His days and nights are completely mixed up. He cannont go to sleep at night. I have tried everything: Advil PM, Ativan, Advil, Tryptophan, Cacium/Magnesium. You name it, we have tried it. He just gets very revved up at night and the OCD gets pretty bad. The last couple of nights have been a little bit better though. I don't want to wake him up in the morning because he is so exhausted and his brain is healing so I just let him sleep really late. Then we are back to square one again, but even on days when I force him to wake up early, he still can't settle down at night. Some have mentioned something about micro siezures of the brain or something like this. If anyone has any information or advice on that I would really appreciate it. Now the GOOD. So many OCD behaviors have gone away. I am slowly taking down all of the papers that had to cover the ovens and microwave so that he could not see his reflection in the glass. He can now be anywhere in the house at night and the shades/blinds can be up. It does not matter if he can see his reflection. He will leave his bedroom door open, and the light on and his Xbox on. This NEVER happened before. (It may sound so trivial, but it is huge for him.) Before IVIG he had many rituals involving turning EVERYTHING Off before leaving a room including unplugging things. When he starts to have a hard time about something that he wants me to do to "help" his OCD, I can now talk or joke him through it. This was literally impossible prior to IVIG. Before, if I did not "help" him he would unravel sometimes to the point of slapping himself in the head continuously. He has only hit his head once since the IVIG. He went outside yesterday and rode his razor in the pouring rain. That has never happened before. Also, he has not gone outside to ride his razor in many, many months. He took a shower yesterday on his own. Usually, I would have to stay in his room while he would take a shower. Also he took a shower while there were other people in the house other than our family members. That has also NEVER happened. I really have to better about documenting more specifics so that I can track it all. His rages are way down also, he will go for days without raging. All I can say is Thank God for IVIG...

Dear Gat's Mom, I am just about to start tackling the yeast with my ds12. He just had IVIG 30 days ago and has been on high dose antibiotics for 3 months. I have a DAN dr. that I am working with, but he is so aggressive. He is used to treating yeast with kids that are autistic. My son is not autistic, but I guess yeast is yeast is yeast. I am afraid to do the anti-yeast treatment that it will do something to his brain that I can't bring him back from. Does that make sense. I know I have to tackle the yeast but even when I have just tried small doses of pro-biotics my son really has a backslide, which I'm sure is from the yeast and I probably just have to ride it out. I just feel like it is so inhumane. He has struggled so much with this healing process from the IVIG, Old OCD behaviors are storming back at him, cycling throught and then going out. It is so frightening for him that I feel like I need ot give him a rest, but then I'm afraid if I do, he will suffer from all this candida. The DAN doc wants to do anti-fungals, biofilm, you name it, he wants to throw it at his gut. Can you offer advice from the perspective of a PANDAS child and yeast? Thank you, MomtoCole I'm unfamiliar with the term "conversion" as used in this group but I can tell you in the DAN! world laughing in their sleep and temperature issues mean yeast. Those moms wouldn't bat an eye at it, would immediately label it candida overgrowth. We saw it a lot in my son during his middle school backslide and sure enough, it and many symptoms went away with antifungal therapy. He's not autistic but that condition also deals with inflammatory and BBB issues and I garnered much good information from those genius parents. Best wishes. Gat's mom.

Have any of you contacted your local newspaper or TV stations to request an article/interview on PANDAS? I contacted our local paper on Friday. I want to "go loud" on this disorder. I am really angry that there are so many kids suffering. If it were not for this board I can honestly say I don't know how I would have ever gotten IVIG for my son. When I was coming home from the airport on Friday night, my son was commenting on all the beautiful Christmas lights around our neighborhood. We did not get lights this year because money has been tight and we needed to spend on the trip to Colorado for IVIG. I asked my son if he would rather me use the money for presents or lights and he said "I just wish we had lights". Just as he said it, we rounded the corner to our house and it was lit up from top to bottom. I burst into tears, 14 of our neighbors and friends in our town, pitched in and hire a person to come and put up Christmas lights. Isn't that the sweetest most thoughtful thing. My neighbor coordinated everything and they actually bought all the lights too so we can use them next year. It just touched me so much. My next door neighbor said that they have all been so worried about us because of my son's illness and the trip etc, and that every time I see the lights that I should picture them all hugging me. The reason I am wanting to go to the press about this is because I think it is a good human interest story. I could tell the reporter all about PANDAS, the trip for the IVIG, the doctor (not mentioning names!) that refused to submit to insurance and then about amazing support from our community. I spoke to a reporter on Saturday and he is just about to leave the newspaper but he said that after everything that he heard, he can't imagine them not wanting to do a story on it. I just feel so strongly that we all need to scream out about this. Children and families are suffering so much and some don't even know that there kids have PANDAS so they are not even on the forum. Please share your thoughts... Thanks, Judy...

Will do, Thanks...

Hello Everyone, I have good news, we made it through IVIG. If ANYONE is having any difficulty obtaining IVIG for their PANDAS child or getting it covered by insurance, they need to go to Colorado. I first want to thank Elizabeth (Elizabeth and Keith) for referring us to Dr. Thomas Smith, he is at the Center for Cancer and Blood Disorders at Children's Hospital in Littleton, CO. The staff was amazing, accomodating, a very loving to my son and to me. They were so interested in PANDAS. Dr. Smith has only treated one other child with PANDAS. Ryan did amazingly well on the plane ride. I did not have to give him any medication at all. He was pretty nervous boarding the plane, but did fantastic. He actually really liked it. I would not have not been able to make this trip without out the help of our behaviorist, Joseph Iller from Breakthrough Interventions. He has had a great deal of experience working with children, mostly autistic children, but he now is providing services for my 7 year old son with Down syndrome and my DS with PANDAS. If anybody is concerned about how to get their child on an airplane, or to be able to accept the IVIG treatment and process, please PM me and I can give you his information. He is so concerned about all these kids with PANDAS and has offered to travel where needed if a family needs assistance. As far as the treatment itself... IV insertion was tough, I should have hydrated him better. He did not know until we got there that he would need an IV. They had to stick him in both arms. They could not find a good vein in his hand. What was uncomfortable was the board tha they had to put on his arm to keep it straight. He had to urinate quite a bit during the IVIG, with all the fluid. They did not run a bag of fluid before the treatment, I was very concerned, so I called Dr. K. He said he cannot intervene, and that I should just give him more fluids orally. Easier said than done. I talked to Dr. Smith about it and he was concerned that Ryan's vein was so difficult to put the IV into that if they run a bag of fluid it could blow the vein and what if they could not get another one, so I let it go. They used Gammagard instead of Gamunex. Again, I was worried, they explained that it depends on the insurance and which brand they will cover, but it is the same thing and it was not sugar based, like the Gammunex. Has anyone else gotten Gammagard? Is Immune Globulin, Immune Globuline, Immune Globulin? Are they all pretty much the same? Ryan was a little agitated at times throughout the treatment. Both days, at about 2 hours in. Nothing major that we couldn't handle. Infusions took 6 hours on day one and 5 hours on day two. We started to see things right away, it was really strange. After the first day of treatment we noticed that he was retracing his steps and movements slightly less and that he was making more direct eye contact. He was also completely excited, full of energy, lauging, making many jokes and taking more risks than he ever has before. He was very playful and had a very hard time going to sleep, up until 4:00 a.m. He went down to the jacuzzi and wanted to fill it with some soap and we did, he would normally never have wanted to do that, he would have been much too scared to break a rule. He put the first bottle of soap in! I thought, what the heck, this poor little guy has not had much joy in his life for quite a long time. 2nd morning getting out of hotel was horrific, we could not wake him up easily. He had a fit/rage, that lasted about 30 minutes, and locked himself in the hotel bathroom. He was so loud that I thought that someone would call hotel security. He said that he did not want the treatment and that he was never going to be able to get rid of the OCD, that it was no use and then he said he was afraid that I would not love him anymore if he still had the OCD. It just broke my heart. He also did not want the trip to end because he has no friends anymore. I hate this disease! So that is the detail on the treatment. As far as side effects: Headache started about 3 hours after treatment while on the airplane. Gave him motrin. Headache was pretty bad that first night. On a 1 - 10 scale he was at an 8. Headache the next day was at a 5 and today, which is 2 days after treatment finished, it was at a 3. Now it is gone. I still wonder if that extra fluid would have stopped that from happening???? We are noticing little changes already. My hopes are up... More playful with sister, more loving towards all of us. He had a big rage last night that lasted about 15 minutes over something really silly. He then walked back into the kitchen and said Mom, Dad, I am really sorry that I just did that. Our mouths dropped to the floor. That has never happened before. Also, other little things are changing... He is leaving the toilet seat up, isn't that a strange thing to be excited about. How often do we (the Mom's on this forum) get upset when our boys leave the seat up. Ryan has NEVER left the seat up for as long as I can remember, he has to let it go and it slams down, he does not want to touch it, so he nudges it so it will close. He also left the door open to his bathroom, while he was sleeping. He has never done that either. So I will take every little thing and just keep hoping for some major conversion here. Thank you again to all for your support. Please consider going to see Dr. Smith, he is a wonderful, compassionate doctor and person... What I also like about him is that he asked me point blank, why I had to travel almost 1000 miles from California to Colorado just to get an IVIG for my son! I told him about our local immunologist that refused to even try to get it covered. Guess what he said: That doctor is a LAZY doctor, and I will call him if you want! I love this man! I will be taking him up on that . Goodnight...