20 year old with CIDP
-
-
June 28, 2009 at 12:52 pm
hi
My son, Ryan, is 20 years old and was a sophmore at Central Michigan University this past fall. Very active kid. In October 2008 he got a cold (so we thought) the next thing I know he is calling me almost daily with reports that something strange is happening to him. First, it was burning in his calves at first he thought he pulled something because he had placed racket ball the night before but the burning continued for days and then hand tremors then numbness and tingling in hands and feet. He was also turning yellow. Then came the scary stumbling when walking. All of his friends started thinking he had been drinking but he doesn’t drink. He looked as if he was drunk and couldn’t get his balance. He lives on the 3rd floor of his dorm and it was becoming very hard for him to climb the stairs. toward the end of November he had to crawl up them. He went to the campus doctors but they couldn’t find anyting wrong. He finally came home a week after seeing the campus docs and he had a doctors appointment that day. Our doctor did blood work and ordered a MRI the next day. she was very worried as he had no tendon reflexes at all. she called us the next day and told us he had an appt with the neuro that next day. we went and he did a EMG and then a spinal tap teh sinal showed his protein levels were around 260 normal is aorund 60. we got the call the next day and was told to come in so we did. here we sat the neuro came in and handed us a print out from the internet. he said Ryan had CIDP. he had only had one other patient in all of his year of practice who had it. So I feel blessed that it only took 4 days from the time he got home to get dx. he told us Ryan would be getting IVIG and then he could go back to school in a few weeks.
Well that didn’t happen. Ryan got IVIG and ended up in the hospital a few days later due to the fact that he was now so yellow he practically glowed and he was urinating biliruben. He was in the hospital for 2 weeks while they tried to figure out what caused him to turn yellow (they never figured it out. They said he had hemolytic anemia but don’t know what causes it) during htis time he was becoming a lot weaker and trouble controlling his heart rate. if he stood up his heart rate would sky rocket the nurses came running thinking he was coding, which he was not. well they never figured it out but did comfirm the CIDP dx. then he was sent to rehabilatation to help build up his strength since he was so weak and couldn’t hardly walk. He spent 3 weeks at Mary Freed Bed and came home at the end of Jan. walking with a cane. In February he lost the insurance since he had not gone back to school (in the hospital). so we had to get him on medicaid since he was medically needy. During that time he had gone 9 weeks with no IVIG and he was going down hill fast. no hospital would do IVIG with no ins, then medicaid denied IVIG since it wasn’t FDA approved so they said. Our neuro called medicaid and fought with them and then they agreed to give it to him for 6 months as long as home health care gave it to him. so he switched to gammunex and got it but it was too late he was so weak he couldn’t walk any longer so he was put back into the hospital. he spent 3 weeks there and received PE 5 times and then IVIG after and had a little bit of improvement so he was sent to Mary Free Bed again for more rehab. He was there for 2 months and is still in a wheel chair. Thats the hardest is that he works so hard and has no real improvement. His endurance is better but thats it. his feet are paralyzed and he is very weak in his trunk and hips and buttocks. His hands are getting more numb and tingling and sometimes his fingers lock when he is typing. I noticed when he is trying to itch somethig he used his knuckles to do it cuz he can’t feel his fingers. He has been having problems with feeling light headed and has passed out a few times. Our rehab doctor says thats normal for patients who are no real mobile cuz when they sit up or stand up the blood rushes away from the heart.
IVIG doesn’t seem to be doing much for him. Our neuro finally agreed to start giving it to him every 4 weeks instead of every 6 weeks. he gets it for 3 days when he gets it plus he uped the dose too. so we are praying that every 4 weeks does it for him. we made an appointment to go to detroit to see Dr. Richard Lewis on July 21st. I am hoping he can help Ryan. Some of you talk highly of him so thats why we decided too try him. I did read once a lady who’s nurse used to work for him and said not to go to him but I figure we need to see for ourselves how good he is or not. Please be praying for Ryan that he gets strong enough to get out of that chair and that he is able to go back to school this fall. He wants too go back even if he is still in the chair which I agree but I have to know he has enough strength to be able to take care of him self. As I help him dress (mainly pants and shoes and sock). also he has to be able to handle the course load. He has it set up that his classes are on Mon, wed friday with tuesday and thursday off to rest.
Is there any other CIDPer’s in or around the Holland/Zeeland, Grand rapids area? Ryan would like to talk to someone with CIDP. he also comes on this sight and reads but hasn’t posted anything yet. so I told him I would so we could find out if there was anyone around here. Ryan worries alot about his future and what it going to be like living with this illness. So far even though this has been a night mare we do feel blessed that he was dx so fast and that he received medicaid fast and he even got approved for social security and disability the firs ttime. It ook 5 months and then they back paid him. so that was huge for him because so many told us that it may take a lawyer and years before he got it. God has been good to us and we are praying for a healing. I have also prayed for many of you over the past several months. your stories are touching and hit so close to home.
Sorry for the book but felt like I needed to put this out there in case others had the same problems as Ryan and also to see if anyone else lived close by. Thanks Rhonda (Ryan’s mom) -
June 28, 2009 at 1:22 pm
[SIZE=”4″]Sorry to hear this. By the way you discribed the events, it almost sounds more like GBS by the speed of his decline. Of course, a lot of GBS cases morph into CIDP. IVIG didn’t work for me either. It made me worse. Because of me, they found out there are different strands of CIDP. The only thing I can take is steroids. I would like to hear more about Gamunexx. That was approved by the FDA.[/SIZE]
-
June 28, 2009 at 2:21 pm
Hi there! I’m in MI too but on the other side of the state.
I’m glad you are going to see Dr. Lewis. From what I’ve read about him he seems to know his stuff.
I too think it sounds more like GBS than CIDP. CIDP’ers tend to gain back things they lost much quicker than GBS’ers. I’m sure you’ve read on here that people say “GBS stands for get better slowly”.
It would also explain why the IVIG isn’t working so well on him.
Hopefully Dr. Lewis will be able to offer some insight & help your son get back to living his life.
I think it would be great for your son to be able to go back to school. Is there anyway he could go part-time to begin with? With GBS & CIDP it’s very easy to get fatigued. It might be better for him to not push himself too much too quickly. He’ll probably end up being able go back to being a full time student in the future though.
My daughter is 7 & has had CIDP for 3 1/2 years now. We try to make her life as “normal” as possible. She isn’t treated like a sick kid. I think that’s key in helping people deal with having any chronic illness – try to treat them like they are any other person.
Good luck with Dr. Lewis. Make sure you update us after you meet with him.
Kelly -
June 28, 2009 at 2:45 pm
Hi Ronda and welcome. I live in Howell Mi. I would have thought he would get his treatment closer together than every 6 weeks. If he still isnt walking after this long . My Gbs was quick. In the hospital friday then to Uof M saturday. Ivig on monday. buy tuesday could not walk wednsday they were talking possible vent, and telling my wife to get our will together. There is a guy ,Jerimey who is the Michigan leason who has cidp that I spoke with That was very encoraging for me.I will find his number and pm you with it.
Take care
Ron -
June 28, 2009 at 3:12 pm
[FONT=”Arial Black”][SIZE=”5″][/SIZE][/FONT]Sorry to hear about your son’s struggles… Rehabilitation took me a long time, and I still continue to get better some one and a half year later… I hope your son is patient, and things can work out for him.. I would be careful about a heavy course load and focus on getting better, if possible.. Stress can be a big enemy of our immune system, as well as fatigue.. I had gbs, that left me in a hospital for a week.. I was treated with ivig, and for about the last few months was weaned off the ivig, and a prescription of pulse steroids… Some things that helped me: get seen by a specialist/neurologist that will listen and follow up with a correct diagnosis… Also, he should try to eat healthy, get plenty of rest, exercise/stretch.. etc…. Try to stay away from stress, alcohol, drugs etc anything that compromises the immune system.. Hope for good outcome… DEANO
-
June 28, 2009 at 11:16 pm
I have a 20 year old daughter with CIDP or CMT – we still do not have a sure diagnosis. She had the opportunity to see Dr. Lewis when we were at Wayne State to see Dr. Shy. We were not scheduled to see Dr. Lewis, but he was kind enough to come down and take a look at my daughter. He even conducted the EMG on her. He is too far away for us to see him on a regular basis, so he referred us to a doctor at Ohio State. I think you will really like Dr. Lewis – he spent a lot of time with us and was very personable.
My daughter is attending college full time as a pharmacy major. It has been a tough two years for her, but she is doing very well.
I wish your son well and hopefully they can get this turned around for him soon!
-
June 29, 2009 at 1:04 am
well I want to start off saying thank you for all of your comments. Also we are pretty sure my son does not have GBS it is difinitely CIDP. If it were GBS he would have been paralyzed and on a vent in two to 4 weeks. Ryan got sick in October and it took 8 weeks for him to get sick enough to go into the hospital and he was never on a vent or paralyzed. He was dx in Dec and ended up in the hospital at the end of Dec, which put him around the 8 week mark. He was at first on IVIG and predisone which he did get better and was walking with a cane by the end of January. Our neuro took him off predisone and moved his IVIG to every 6 weeks but it was at that time he was kicked off our ins due to not being a fulltime student. It took 9 weeks to get his next dose of IVIG that is why he got so bad. It is just frustrating because we thought he would get better fast this time but its not going very fast. we think its because he was getting IVIG every 6 weeks he needed it closer together. so for 3 months now we have been trying to get the neuro to change it back to every 4 weeks and he finally decided to do it. but he doesn’t want to put him back on predisone cuz of the bad side effects. so that is why we want to see Dr lewis we are hoping he will get things moving along. Maybe he has another treatment or maybehe will just put him back on predisone with the IVIG. We are also hoping he will be able to figure out why RyaN goes through hemolytic anemia. we don’t know what triggers it, is it IVIG or something else. He will somtimes have it after IVIG and sometimes he doesn’t. Its just weird.
Its just very frustrating for him because he used to be so active and he isn’t any longer. Its beenn hard on him. he was BIOMEDICAL SCIENCE MAJOR until December. His hope of being a surgeon went down the toilet. His hands tremor too badly. so now he is taking all the science classes he had taken adn turning it into a another science major and going to be a science teacher. big changes adn big decisions.
Carla how is your daughter dealing with all of this? is she able to walk? how long has she been sick? what is CMT?
Again thank you to all of you for being so caring. -
June 29, 2009 at 9:57 am
Hi Rhonda:
Glad we can be of some help for you.
I was diagnosed gbs. I was never on a vent, and my symptoms came on within a few weeks and pow, I started walking like I had polio, I had severe back pain, and other symptoms.. I went into the Emergency, and they did a lumber puncture/mri/reflex/nerve conductions etc… These are all tests doctors can use to determine if there is ongoing nerve damage and what he has.. Is it possible the prednisone and ivig are counterproductive taken at the same time for your son? It has been so long since I have read up on this stuff…. Be very active in your son’s treatment plan and diagnosis..
-
June 29, 2009 at 10:15 am
My daughter started this journey in 2005. She started 2005 with what she called pinching under her toes. About mid 2005 it very painful calves. By August 2005 she started falling and when it was cold she had trouble with her hands. She had been very active all of her life. She was involved in Color Guard and Winter Guard. When we took her to the doctor she did not have reflexes in her knees. The first Neuro that we saw diagnosed her with CMT (Charcot, Marie, Tooth). That is usually a hereditary disesase, but you can acquire it through a mutation. The symptoms are very similiar to CIDP. There was not any history in our family. We then took her to the Mayo Clinic and they ran all the tests and she had elevated protein in spinal fluid. They started her on IVIG. The only difference we saw was her fatigue was a little better. One year later they added Cellcept. Still no changes. We went back to Mayo and they said it could be CMT. We went to Johns Hopkins this year and they think CIDP. We also went to Wayne State University and they think CMT. We are now at Ohio State. They have taken her off the Cellcept and are spacing apart her IVIG treatments. She had been getting them weekly for 3 years. They are now going to be every three weeks. They are going to try to wean her off in September and see what happens.
She has had AFO’s since January of 2006. With the AFO’s she can walk pretty good. Without them, she trips and falls because she catches her toes. My daughter is a very positive person. She tries really hard not to let this get her down. It has been a really rough 4 years. Despite all of this, she graduated high school with a 4.0 and is in the top 15% at Ohio State. Our new doctor has promised her that he will make changes and try to get to the bottom of this. She has been on the same treatment for 3 years with no changes. She is happy the new doctor will make changes and try new things.
-
June 29, 2009 at 11:23 am
He has had 2 neuro’s since dx in Dec and they each did their own EMG and Lumbar puncture and both said he had CIDP. so we are pretty sure that is what he has. symptoms began around mid October and he was dx 2nd week of Dec and then had IVIG Dec 22,23,24th went into the hospital becAUSE he was so juandice On Dec 26th. went to mary Free Bed Rehabilatation Hospital on Jan 5th and came home Jan 23rd walking with cane. Got IVIG again last week of Jan. went off predisone Feb 15th started getting weaker. loss his ins and had to stop using cane begining of March and switched to walker. continued to get weaker. Meanwhile no IVIG cuz no insurance called neuro office repeatedly since end of Feb no response from neuro. finally April 9th had enough and called neuro and told his staff that I was bringing him in that day weather they had room for him or not. It had been almost 3 months since his last IVIG treatment. he was set up to get the IVIG, now that he had ins through medicaid but he was so weak he could no longer use his walker for more than a few steps so I wasn’t waiting any longer and took him in to see the neuro. He admitted him to hospital.
They did another lumbar puncture (3rd one) still has CIDP. did plasma exchange every other day for 10 days (5 treatments) and then a week later did IVIG for 3 days saw his strength come back and a little bit of movement in his toes. so they sent him back to rehabilatation hospital for 2 months. during that hospital stay he had another IVIG treatmetn for 3 days. He seems to do well strength wise until the end of the 4th week after his treatment then he starts losing that strength but then has to wait 2 more weeks before getting another IVIG treatment, during those 2 weeks he gets real weak. so we are now hoping that with getting treatment every 4 weeks we will see more improvement because he won’t get so weak but I do think he needs to either be put back on predisone along with the IVIG or they need to do both IVIG and PE. ivig alone doesn’t seem to do much for him other than give him a little more strength. He wants out of the chair and wants to walk again but he has burning in his buttocks and hips which he is very weak there and if you want to walk that area has to be stronger.
Yes we do watch how much Physical therapy he gets we do not want to wear him out. He gets it twice a week for 1 hour each day he goes. he also has 1 hour each time he goes for Occupational therapy. Physical therapy they concentrate on building up his strength and stretching and occupational therapy he works on dressing himself, practices fine motor skills (since he has numb fingers and hand tremors) the rest of the week when he is not at physical therapy we only stretch it seems to help with his foot and leg pain and we work on dressing so he can feel independent. He has the hardest time with socks and shoes since its hard for him to bend over to put them on. He gets stiff in his joints. and then his pants or shorts are hard to put on cuz he has a hard time liftinghis butt up so he lays on the bed and rolls onto his stomach and pulls them up that way.
we don’t do hardly any pt at home. he gets lots of rest and drinks lots of fluids.
he is just frustrated cuz he wants to be out of the chair now not later and the fact that he doesn’t have a lot of significant results from IVIG by its self we feel like its not doing much for him. He does get the migraines from IVIG and has to be premedicated with predisone and benedryl and then gets topamax daily for migraines but also gets maxalt during the week of IVIG and for four days after because he gets aseptic menegitis from IVIG and also sometimes goes through hemolysis following IVIG and biliruben spikes. the highest his biliruben has been was a 20. normal is below a 1. however all test shows there is no liver damage so its a mystery to why his biliruben spikes so high.
again sorry for the book but I thought I needed to clarify that he doesn’t have GBS its difinitely CIDP. I wish it were GBS so it would be a 1 time deal but its not. its reoccuring.
Carla- I do hope they figure out which one your daughter has. Ryan is a pretty positive outlook to but he has been having some bad days lately. I think comments that some family members have made recently is the cause of his down days. but over all he has stayed pretty positive. Some of the family members like grand parents and aunt and uncles need to be more careful with what they say to him. I know they mean well but the comments have been pretty upsetting to him. They think because he is in a chair right now that he should not go back to school. he shold stay home and do nothing. news flash people in wheel chairs can have a life..Being scared should never stop you from living.. life is scary and this disease is scary but like he said and I agree he has to live his life..Rhonda
-
June 29, 2009 at 11:48 am
I think Dr. Lewis does the IVIG every three weeks, but sometimes at the beginning they will put them on a more frequent basis until they get it under control. I have been told by most doctors that it only stays in the body for 21 days. 6 weeks is way too long. Good luck with your trip to see Dr. Lewis.
-
June 29, 2009 at 12:06 pm
yes I agree 6 weeks was way to long. Our neuro is one of those who – he is the doctor and since your not don’t make suggestions. so that is why we want to see Dr. Lewis we are hoping to get better service from him. Our current neuro said that he couldn’t have IVIG done any closer than 4 weeks cuz you risk a heart attack the more often you get it but I haven’t read anything that backs that up. I think with him its what I say goes and who cares what the patient thinks.
But I am the kind of person that if I don’t like the answer then I will find someone who will give me answers. we have to be our own as well as our childrens advocates because no one else is going to do it. I will do anything and go anywhere to get help for my son.
I am finding out that this is going to be a long journey for every one. there are no fast fixes. I told Ryan he has to have patience and for a 20 year old that can tuff sometimes. haha!! its tuff for me too, i’m not the most patient person haha!!
Rhonda -
June 29, 2009 at 12:55 pm
My daughter has been on weekly IVIG for three years and has not had any problems thankfully.
I know what you mean about not stopping until you get results. We have been many places in the past three years and I won’t stop either. This is such a rare illness and you have to find someone that is experienced in treating CIDP and is willing to make treatment changes when needed.
-
June 29, 2009 at 10:13 pm
Rhonda:
Sounds like you have been through a lot.. It was a lot for my wife to handle.. She spent many hours on the phone with medical/insurance.. We didn’t know if I was going to make it either (living or dying)… That can put the meaning of life in perspective real quick.. Your son is lucky to have an advocate as determined as you.. I didn’t mention this, but it is important for you to keep you health up as well.. I was wheelchair bound for a while, and I understand the frustrations.. I thought by sharing my story, I can help by encouragement.. Everyones struggle is different… Keep on fighting, I am pulling for Ryan, as 20 years old is much too young.. But age is a good thing as far as healing.. Keep up the faith… deano
-
June 30, 2009 at 10:11 am
Thanks Deano. I do try to get my rest too. I am no good to Ryan if I am sick. So how is yor wife handling things now? Have things gotten better for you? How long has it taken you to get better than you were when you were at your worst?
Carla how much IVIG does she get on a weekly basis? How many days does it take to infuse it?
-
June 30, 2009 at 10:34 am
When I was at my worst from about october 2007 to March 2008, my wife pretty much did everthing.. That includes paycheck, kids, and me… I can’t believe how strong she was… It was very stressful for her and me as well since I was not used to being looked after and immobile.. Sometimes a person asks why me?, but I made it thru, and she has too.. I went thru many months of pt/ot, and I did a lot of strengthening/stretching at home.. I did a lot of pilates/treadmill/recumbent/balance exercises on my own.. I’ve had ups and downs healthwise.. and was rediagnosed cidp back in Feb 2008, as I had a relapse.. I think it was just the ongoing nerve issues weakness from the original attack… I was on a regular schedule of ivig and pulse steroids from april of 2008-april 2009… I’m way down on the mg of pulse steroids and will be off them by august… Healthwise, I’m doing pretty doggone good…. Currently, I don’t think I have any active nerve damage going on, but I also know it can come back any time if in fact this is cidp… So after many $$$$ spent this past couple years on ivig/deductables/emerg.. we survived….. Never say die.. Never quit… Never give in…. We (my family) are making it…. Things are never gonna be the way they used to be, but neither are we… I think we came out better people in some ways……
dean -
June 30, 2009 at 2:06 pm
Sorry to here about Ryan. I do not know how i would do it being 20 years old and have this. I really feel for him. Was he in sports, or active in school ? I started having problems in 2008 with my legs and they done a spinal and the protein was high. they gave me 5 days of ivig and in two months they gave my another 5 days. I thought it was in remission and then i felt my hands having problems in dec 2008. feb 2009 i couldn’t do anything my hands were dead. They gave me another 5 days of ivig and started therapy. I have got my strentgh back put the feeling is not and they cramp up aroound my thumb if i work it too hard ? Thanks for your story rhonda and keep in touch with us.
-
June 30, 2009 at 9:01 pm
I just did a quick Google search for “hemolytic anemia caused by IVIG” and these links came up:
[url]http://www.google.com/search?hl=en&q=hemolytic+anemia+caused+by+IVIG&aq=f&oq=&aqi=[/url]
The first link ([url]http://www.ncbi.nlm.nih.gov/pubmed/9270670[/url]) was to this study:
Department of Neurology #127, Hines VA Hospital, IL 60141, USA.
Intravenous immunoglobulin (IVIg) is a useful tool in the treatment of a variety of neuromuscular disorders. Though IVIg therapy is generally safe, hemolytic anemia is a potentially serious complication that is often overlooked, and is currently not listed in product inserts. We analyzed 45 patients who received IVIg therapy, including 38 consecutive patients who received IVIg over a 13-month period. On 42 patients, direct antiglobulin testing was performed, searching for antibodies to the patients’ own blood type. Of these 42 patients, 12 developed passive sensitization with antibodies to their own blood group antigens after receiving IVIg. Of these 12 patients, 11 patients developed hemolysis severe enough to lower the hemoglobin level by at least 1 g/dL. Of these patients, 3 required blood transfusion, and 1 had IVIg therapy truncated because of the hemolysis. Antibodies to blood group antigens are found in all commercial preparations of IVIg. Though most patients do not have clinically significant hemolysis, clinicians should be aware of this potentially serious complication. Careful monitoring of hemoglobin levels during IVIg therapy is recommended.
So apparently IVIG can cause the anemia. Because of this maybe Dr. Lewis will order plasmapheresis & steroids or another immunomodulator.
I think you should print any study you can find on the link between IVIG & hemolytic anemia to take to him….just to be on the safe side.
Good luck,
Kelly -
June 30, 2009 at 9:09 pm
Yes we have asked those questions.. why Ryan? We don’t know and I would gladly take it for him than to have him take this journey. He of course says the same- he wouldn’t want any of us to have it. He is a great kid. Yes he was very active… He played rachet ball, worked out, ran daily.. He was busy all the time. Now … well he doesn’t do much since he is in the wheel chair. He gets together with his best friend once a week on Tuesday’s because thats his friends day off. The other days are really hard for him but he is getting through it.. one day at a time. I try to find things for him to do and every once in a while we go to lunch or to a movie. A date with Mom… thats what he wants to do. lol. He is very brave as all of you are. To face a future with this disease the not knowing.
Kelly thanks I have read a lot of these studies and yes it will be brought to Dr, Lewis’s attention. I am sure IVIG has alot to do with it but he was going through hemolysis prior to getting his first IVIG. he was yellow when he came home from school in December. which was the first time he had ever had a problem with his biliruben being so high and his red blood cells breaking down. everyday he got increasingly more yellow (he was taking tylenol) about 800 mg 3 times a day for headaches. At first they thought it was the tylenol causng it but there was no liver damage so then they thought he had Wilson’s disease because he had a urine test that showed high levels of copper in his system. But after a second urine test that came back normal they decided it must have been an error in the lab that caused the high level of copper. (this was all in addition to the CIDP). so its been interesting to say the least. They still didn’t figure out what caused the first one to happen. A few times it happend after IVIG but not always. We are hoping Dr. Lewis will figure this all out and if it means going to PE and other treatments then we will gladly try it.
Thanks for the info.Rhonda
-
June 30, 2009 at 10:01 pm
I talked to our current neuro’s nurse today and she told me that ryan had been getting 40 mg everyday for 3 days every 6 weeks the past 6 months. She said the doctor raised it to 50 mg everyday for 3 days every 4 weeks going forward. Is that a good dose? Not sure what everyone else gets.
-
July 1, 2009 at 11:37 am
My daughter receives 22 grams once per week. It takes about 1 1/2 hours to administer.
-
July 2, 2009 at 9:36 pm
Ryans mom-
Does medicaid cover the IVIG treatments or does your private insurance cover? -
July 2, 2009 at 10:33 pm
Medicaid covers the IVIG treatment as long as it is done at home with home health care nurse. we use a HHC that only does infusions nothing else. and they have to use only gammunex brand. as gammunex is the only brand of IVIG that is FDA approved. it took our neuro to call medicaid and fight for it to get them to pay for it. But thankfully they approved it.
Ryan was kicked off our regualr ins BCBS because he had to take last semester off school because he was in the hospital. He will have both BCBS and medicaid when he goes back to school. Then BCBS will cover 90% and medicaid will pick up the rest. -
July 2, 2009 at 10:57 pm
Ok, thank you.
I was kicked off my parents insurance when I was 19.. so thankfully I have MA.
I wouldn’t mind having infusions at home.
It sounds like the opposite of what they make medicare patients do.
They will pay so long as they are at an infusion center. -
July 3, 2009 at 12:43 am
RyaN has had IVIG at the hospital, infusion center and home. He perfers home.
-
July 5, 2009 at 2:17 pm
Hi Rhonda,
You have been given great advice here, the people here are amazingly helpful. I have not seen Dr. Lewis personally as a patient, but I have met him and have also referred others to him. My personal opinion is that your son couldn’t be seeing a better Doctor. That said, if for any reason you are unhappy going to Wayne State and would like to see my Neuro. Dr. Teener at U of M, I can help make that happen. I recommend you see Dr. Lewis though.
I also have Hemolytic Anemia among the many Autoimmune diseases I have, because your Son has CIDP, the fact he has another AI disease is not surprising. Thankfully the treatment for the Anemia was Prednisone, which I took for CIDP as well.
Feel free to call me anytime you need to, my number is 734-929-4653 and I am happy to help and would be happy to meet you guys sometime as well if you want.
Best of luck with everything, and please make sure Ryan understands that this disease takes some time to recover from and for now going back to school may not be the best plan. Get a good Neuro. your happy with and please tell him to be patient. I know how hard that is, I am a very Type A person and CIDP caused me to slow down because you have to to recover.
Jerimy Schilz
PS-One more thing, I am also on Medicare/Medicaid and get my IVIG infusion done at home and have for 6 years now. The key is that the Neuro. has to tell Medicare/Medicaid that it is necessary to be done at home and they will stooping fighting you on it.
-
July 7, 2009 at 10:17 pm
[quote=Rhomcc]Medicaid covers the IVIG treatment as long as it is done at home with home health care nurse. we use a HHC that only does infusions nothing else. and they have to use only gammunex brand. as gammunex is the only brand of IVIG that is FDA approved. it took our neuro to call medicaid and fight for it to get them to pay for it. But thankfully they approved it.
Ryan was kicked off our regualr ins BCBS because he had to take last semester off school because he was in the hospital. He will have both BCBS and medicaid when he goes back to school. Then BCBS will cover 90% and medicaid will pick up the rest.[/quote]There are currently 9 FDA-approved brands of IVIg.
-
July 8, 2009 at 3:11 pm
There might be 9 FDA approved brands but according to medicaid in Michigan Gammunex is the only one approved for CIDP. At least that is what we were told by medicaid in MI. we have tried other brands when he was on our BCBS. But Medicaid will only let HHC use gammunex for Ryan. At this point gammunex is fine until our neuro switches to a different treatment.
-
July 9, 2009 at 11:30 am
Ryan has been getting IVIG the past 3 days and its the first time he has received it at every 4 weeks. He was getting it every 6 weeks and it was way to long to wait for treatment.
In the past we have seen very little results and it has been hard to not get frustrated.
This time he is seeing some results. He has been unable to move his feet or toes and in past IVIG treatments he would be able to barely move them and you really had to be looking to see it. As of last night Ryan moved his left foot and wiggled his toes and it was so noticeable, I almost cried. We are eager to see if his right foot will respond in the next week or so. we are so excited.
-
