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momtocole1

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  1. 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...

  2. 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.

  3. 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...

  4. I can't remember exact dose but us was Dr k"s, I think

    it is posted on his website.

     

    Brand was Gamunex

     

     

     

    :wacko:

     

    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...

     

    Wonderful!!

     

    Now the qestions...

     

    What dosage 2 gr per? What is the type of IVIG? Name?/

     

    Thanks

    Melanie

  5. :)

     

    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...

  6. 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...

  7. 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,

  8. 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,

  9. 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...

  10. 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,

  11. 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...

  12. 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

     

    My dd went to bed normally as usual tonite about 9:00 and fell asleep within 15 minutes. At 11:30 I heard her in her bedroom laughing hysterically very loudly (I call it the "bats in the bellfree" laugh that she had prior to any pandas treatment -- still haunts me), she was speaking nonsense...I thought she was dreaming. I went in to check and she was wide awake acting completely bizarro. I told her to go back to sleep and that it was very late. She proceeding to continue with the laughing, made up words, potty talk, screeches, squeaks, banging the wall with her foot, occasional "what are you doing, mom?" This continued for over an hour and a half. She has not been like this since last summer at her worst. She then said she was "hot" and came out here to the sitting room where I am. She was all sweaty and flushed and drank a huge glass of water. She seemed pretty lucid, and watched a bit of tv with me. She went back to bed about a half hour later and is sleeping soundly. I had posted a few days ago after reading some threads where kids complained of being very hot as they were perhaps close to or going through conversion. My dd10 has had 5 ivigs treatments and for the past month has awakened in the middle of night very sweaty (she is in light cotton pjs and regular quilt) or in the mornings with that matted damp hair. This has now happened for the 5th time in the last month. "Conversion" is one of those funny words to me in all this...a bit ethereal, and not something that I have read much about. Have any parents further up the chain seen this as their children's brains were healing?

     

     

    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.

  13. 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...

  14. 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. :unsure:

     

    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...

  15. I can't believe it is finally here. We are taking our son to Colorado tomorrow for IVIG at The Children's Hospital in Littleton, CO with Dr. Smith (Thank you Elizabeth!!!).

     

    We told our DS yesterday and it was really rough. He is afraid to fly, but we are having success with calming him with Advil PM, I tried it last night and tonight to see how he would react first.

     

    I have to say it is the only thing that has helped calm him, since I can remember. I did not realize, until the nurse at Dr. Smith's office told me today that advil pm is just ibuprofen with Benadryl. I double checked the active ingredients and was that a suprise. I thought my son could not handle Benadryl, but he can. Also, it has been a long time since we tried it with him.

     

    He was moving around upstairs for hours last night, jumping off furnitre, hiding in between his mattresses, crying out and just all around inconsolable with so much worry. I gave him the two 200 mg. tabs (safe dosage per label) and within 30 minutes he was completely calm. Just laying on the bed, using his laptop. He said "Mom, I'm ready to go to sleep now". I was practically jumping up and down with glee (In my head of course).

     

    It did not actually make him sleep right away, but he went to sleep a couple of hours earlier than he has in the past couple of weeks.

     

    Wish us luck...

     

    I cannot wait to get this part of the journey over!

     

    I'll keep you all "posted", literally!

     

    Thanks for all the support leading up to this, We would not be where we are today without this amazing Forum.!

  16. Dear Peglem,

     

    Does the valium calm her? Do you notice that it works to help her be less reactive?

     

    Can you share her weight and the doses you have used?

     

    Thanks,

     

    Judy...

     

     

    Dear Peglem,

     

    Thank you so much for forwarding this. You may have mentioned it elsewhere, but what have you been using to sedate your daughter on the airline?

     

    We've never flown before, but what we are going to use is diazepam, which we have used for dental appointments and presurgery (T&A). So we know somewhat, what dose she can tolerate and how high we can go. She also has had an "as needed" script for this for several years now, only at a lower dose. I believe diazepam is the generic of valium.

  17. Dear Peglem,

     

    Thank you so much for forwarding this. You may have mentioned it elsewhere, but what have you been using to sedate your daughter on the airline?

     

    Thanks,

     

     

    U.S. Department of Transportation Reminder

     

    The Toll Free Hotline for air travelers with disabilities has been in operation since August 2002 and is available for callers from 7 a.m. to 11 p.m. Eastern Time, seven days a week. It is currently not being fully utilized. The Hotline serves two main purposes: (1) education, and (2) assistance in resolving disability-related air travel problems.

     

    * Many air travelers with disabilities are not aware of their rights and the Hotline, in part, exists as an educational service to inform air travelers with disabilities about their rights under the Air Carrier Access Act and the Department's implementing regulations 14 CFR Part 382 (Part 382). Hotline operators are well versed in the ACAA and Part 382 and can provide callers with on the spot general information about the rights of air travelers with disabilities. The Hotline operators also respond to requests for printed consumer information about air travel rights for people with disabilities.

     

    * The Hotline can also assist air travelers with disabilities in resolving real time or upcoming issues with air carriers. The purpose of "real-time" assistance is to facilitate airline compliance with DOT's rules by suggesting to the passenger and the airline involved alternative customer-service solutions to the problem. The airline remains responsible for deciding what action will be taken to resolve the issue in accordance with the ACAA and Part 382. Generally, if a caller has a real time problem or an upcoming issue with an air carrier, a Hotline Duty Officer will contact that air carrier and attempt to resolve the issue. For example, there have been a number of incidents in which Hotline Duty Officers have contacted air carriers and convinced them to accept service animals and electric wheelchairs on board flights, to stow folding wheelchairs in the cabin, and to provide requested wheelchair assistance.

     

    Air travelers who want information about the rights of persons with disabilities in air travel or who experience disability-related air travel service problems may call the Hotline to obtain assistance at: 1-800-778-4838 (voice) or 1-800-455-9880 (TTY).

     

    I called these people this morning and they were very nice and helpful! I explained that my child has an anxiety disorder, and although she would be on a sedative, we still were not certain that she would not freak out mid flight. One of the things they said (because my daughter is apt to look drunk and disoriented w/ the sedative) is to get a note from her doctor stating that she will be able to complete the flight without needing medical intervention. Apparently the airlines can use their own discretion in deciding if a person is unfit for travel, and if they feel a traveler may become a medical emergency in air, they can refuse to transport. I'm not sure what kind of a reaction you get from your son when he is distressed, or how your son may appear to others when sedated- but this might be something you want to do. My biggest fear is that my daughter will freak out and they'll land at the nearest airport and put us off the plane...

  18. Thanks Faith, We are planning to take him to the airport and other things to get him ready...

     

    Thanks for the sweet note. I can't wait to get this done!

     

    Love, Judy...

     

    Judy,

    wow, you're finally on your way... :) This is the childrens hospital you were speaking of?

     

    How about a little visit to the airport terminal this weekend to kind of get him prepared, so that when he goes next week, he'll be familiar with the surroundings. you won't be able to go into the gate area or by the planes, but at least you can get the feel of things and show him the big planes and talk about how fun and relaxing it will be........ :wacko:

     

    Good luck and blessings my friend,.....

    Faith

  19. Is it possible that Dr. Lattimer wants to see you because the Cunningham tests are showing outside of the normal range? So many of our kids are getting "abnormal results" on these tests, i.e., high cam kinase, anti-dopamine, etc. I would email Dr. Cunningham. If you don't have her email, feel free to pm me.

     

    I would also try to email Dr. Lattimer. I have heard that it takes her a little while to respond, but that she does. It is too much stress to wait to see her I think.

     

     

     

    We've been waiting for our results from the test we took in October. We got a call from Dr. Latimer's office today. She wants us to come up, our results were abnormal and she needs to see us to discuss the results. Does anybody know what else the Cunningham test could results could show? I'm scared to death and don't have any idea what else could even show up in this test. Did anyone else have abnormal results?
  20. We are taking our son with PANDAS on an airplane next week to Colorado for IVIG. He has never been on a plane before and I am nervous.

     

    Has anyone tried a sedative type of medication. I can't use the "standard" type of med. like benadryl, because it revs him up vs. calming.

     

    I have close friend that has a son who is on ativan and that calms him quite a bit. This child has cerebral palsey and siezures so I don't know if the doc would prescribe.

     

    If anyone has any tips, I would really appreciate it.

     

    Thanks,

  21. Dear Dr. T.,

     

    Thank you for letting us now. I had hoped to be on TV this week talking about PANDAS. I have a 12 year old son that I am taking to Colorado next week for IVIG. I live in Southern California (Diana Pohlman mentioned my son to you).

     

    Beth Maloney (Saving Sammy author) asked my son's pediatrician, Dr. Thomas Lin from Irvine, California to appear with her on the Bonnie Hunt show which is taping this Thursday, December 10th and airing on Friday, December 11th.

     

    Dr. Lin, contacted me and asked me to join him because he felt that I had so much up to date information on PANDAS and that I knew more about it than him. He asked me to contact the producer of the show to see if I could join him.

     

    I decided to ask Beth Maloney first since it is her book and her appearance. She responded back to me telling me that the producers had decided to just air the segment with her, no doctors or other parents.

     

    I was so dissapointed because I wanted to talk about IVIG and PEX because it seems that Beth is talking so much about just antibiotics.

     

    Please try to add that into your 60 seconds.

     

    Thank you,

     

    I just wanted to let the community know that I am scheduled to appear tomorrow 12/8 on TV as follows:

     

    1. On the NBC "Today Show" at approximately 8:09-8:13 AM EST with Lauren and her mom. I am supposed to be interviewed by Dr. Nancy Snyderman and Meredith Viera.

     

    I've been told I have 30-60 sec to explain PANDAS and its treatment ....

     

    2. On the "Dr. Nancy" show on MSNBC at approximately 12:30pm EST. This is supposed to be a longer segment.

     

    I'm going to try my best to paint a "fair and balanced" picture of things. What "textbook PANDAS" is, possible variants, things parents should look for, and areas for research. The idea is to disseminate good information and that many valid treatment options are possible depending on many factors.

     

     

    Please let me know how you think things went, what we can do in the future.

     

    Dr. T

  22. I just received a phone call from a family member that was asking questions about the immuno doc that I saw at UC Irvine. This is my brother-in-law, he is a very bright and informed person. He has his Phd from UC Berkely in Bio Chemistry.

     

    He was concerned that when he did a google search on Dr. Gupta and PANDAS and IVIG, my post from this forum came up. He felt that it was not appropriate for me to be saying bad things about this doctor on this forum.

     

    I told him that that is what this forum is for, a place for us parents to vent, openly about our struggles, our frustrations.

    I also said that I was so upset with this doctor that not only did I put it on the forum that I thought about contacting a news reporter to put it on the news. I actually was so upset after I saw him, that I thought about that.

     

    Here is a doctor that is in the next town over that is willing to do an IVIG, but won't use the Dr. K dose or make any attempt to get it covered by insurance and will not contact Dr. Lattimer, Dr. K or anyone.

     

    I would never have really gone to a reporter, I was just emotional and I'm worn out.

     

    So, my question, isn't this forum the only place where we can be candid and not worry about backlash.

     

    My brother-in-law felt that if I ever needed this doctor again that I could not go back because of writing this. He said that it could only hurt me and hurt my son and it would not help me in any way to write this on the forum.

     

    It does not help that my brother-in-law, went to this UC Irvine, so I think my post felt like punch to the academic world there.

     

    Please be honest, I need to know if I made a mistake her. Maybe I have lost my perspective and should be more careful and not use any doctors names if it is derogatory. My Brother-in-law thought that if another doctor googles my name, that they could find this forum and then they would not help us.

     

    Am I paranoid? I am angry and I know that I have some pretty strong reactions lately, but I feel this is the place to vent them.

     

    Please share your thoughts...

     

    Thank you...

  23. Okay, this may seem strange, and it may be my imagination, but my son seems to have better days on a the TEVA brand of Zith. He is on 500 mg. a day so I have to mix a new bottle every few days and my pharmacy does not always have the TEVA brand in stock so we will get the Greenstone Brand. I know this must sound really strange, but he really does seem better when he is on the TEVA brand. The pharmacist said they are exactly the same medication.

     

    I do think sometimes that the brand name medications are better than the generic, so wouldn't the same principal apply to different brands within a generic family of antibiotics.

     

    You can all just tell me I'm officially crazy now, because I am grasping at straws here...

     

    Just wanted to get others input on this...

     

    Thank you,

     

    Judy...

  24. I woke up this morning and Beth Maloney and Sammy were on the Good Day LA show, Fox channel 11 (southern cal).

     

    I think it is a great thing that Beth wrote the Saving Sammy book and that she is getting the word out. I just wish that when she was

    being interviewed she would make a statement about the fact that antiobiotics do not work for ALL kids with PANDAS. They certainly help as we know, but for some of the more severe cases, IVIG and or plasmapherisis is necessary.

     

    Also, I think that Augmentin does not work for everybody. It helped my son for quite a few weeks and then he really had a backslide, could have been dental work, etc, not sure.

     

    He is now on Zith and slowly working his way back, but we still are working toward IVIG and we know we have a road ahead here.

     

    Will those of you that would like to comment on this, send me back a message. I am going to compile our "feedback" on this and send a "really nice" email to Beth and ask her. It might not be something she is willing to do, but it is worth a try. I will keep all the comments confidential and send her a synopsis.

     

    Thanks,

     

    Judy...

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