7 y/o daughter has CIDP; we’re in the military
AnonymousJuly 19, 2009 at 12:02 am
My daughter Payton got the flu mist last year in Oct and then got a high fever about a week later. Three weeks after that she started showing signs of instability and losing strength in her hands. After the run-around with military pediatricians, my wife was able to get her seen off base and then sent them to an awesome hospital in Augusta, GA, where she was diagnosed with GBS; they did EMG & Spinal. She underwent first IVIG as I was being recalled from my deployment to Iraq; I was able to make it home in about 30 hours. She was showing ‘some’ signs of improvement until mid-May when she spiked another high fever and subsequently started complaining of pain in the legs and more tingling (which she had off-and-on anyway). So, in Jun – after a NCV test – she showed regression and was then diagnosed with CIDP. Thus followed another round of IVIG. So, we are ‘only’ eight months into this and really haven’t seen the progress we thought we might see. As I’ve read many times throughout this forum (which is AWESOME), this syndrome does not appear to manifest itself the same in every person. However, through my reading I was not able to find the answers to the following questions (some of which might be too military centric to answer):
1. We noticed a lot of kids getting two or three rounds of IVIG within a four week period. Her doctor said they couldn’t give more than one ‘treatment’ every six weeks; she has received about six ’rounds’ per visit. Is this due to a lower amount the rest of your kids are getting, or is there something we’re missing out on? I’m not sure of the actual dosage she has received but we will be asking on Monday.
2. Since I am in the military, I am due to move again in about a year. We have been placed in the Special Needs program for health care and such, but I was wondering if folks could point me in the best direction to find the best GBS/CIDP neurologists that might be close to a USAF base. It would certainly help make our assignment choice quicker.
3. Do other kids with CIDP suffer from migraines at all? Is this on a case-by-case basis or something more common throughout the syndrome? They gave my daughter Periactin to help control them and it also causes drowsiness and increases her appetite, so we give it to her before bed.
4. Has anyone else tried doing chelation/ionic foot bath treatments for their kids? What have been the outcomes? The reason I ask is it appears GBS/CIDP can mainly be caused from medical treatments/vaccinations where a lot of ‘toxins’ (mainly mercury) can be used and I was wondering if the treatments had any positive effects?
5. STEROIDS! 😡 Hate them and really don’t see the good they’re doing for my daughter. I kind of understand the need for them – it keeps the immune system from continually attacking the peripheral nervous system – but she seems to be on more meds to counteract the side effects of the Prednisolone than just taking that alone; she gets 1 Tsp/day of a 15Mg/5Ml dose. My thinking at this point is it was a vaccination (medicine) that got her into this predicament in the first place, so why continue to flood her body with that junk? She is puffy, has stomach pains (takes Prevacid), gets Thrush in her mouth occasionally (takes Mucositis), and has already showed signs of bone loss in her hips – of course it wasn’t until she had been on the steroid for four months that a doctor finally asked if she was taking extra calcium because the meds deplete her of it – so she now takes a 2x Tums/day. Also, her last BP was a bit high for a 7 y/o and one neurologist was a bit concerned. Unfortunately, by taking his advice to pull back on the dosage, she ended up having the additional attack in May. So, I guess (after all that) my question is – is there a safer steroid out there for kids other than Predisolone?
6. Some folks had mentioned their kids were getting IVIG at home. What might be the process for obtaining such care? Right now, we have to drive four hours to take my daughter to her neurologists, and possibly stay for IVIG. Granted, the military pays us back, but the wear-and-tear on us and the vehicles is tough.
7. I want to thank those who mentioned throughout this site about a recourse (filing a lawsuit) against the vaccine manufacturers. After reviewing my daughter’s (short) medical history, a legal team has decided to represent us. Of course, the amount of paperwork I have to submit for this is a nightmare, but hopefully it will be worth it for my daughter to continue her care in the long run.
I know this is long and I want to thank everyone for all the information. My wife and I have learned so much just from sitting down and reading the forum every so often; once we start we find it hard to stop at times.
Our prayers go out to all those who continue to deal with this ‘peculiar’ syndrome, and we pray we all have the outcomes as some of those rewarding stories I’ve read.:)
AnonymousJuly 19, 2009 at 9:46 pm
Hi Payton’s dad
welcome to the forum. We are also prior service so I know what your going through dealing military doctors. My son Ryan is 20 and got sick in Oct 2008 but from a viral infection. He was dx in Dec and since then has gone from walking to stumbling to now in a WHEELCHAIR. He has been getting IVIG since Dec and was getting it every 6 weeks also. we have fought our Neuro to get his IVIG treatments closer to gether as 6 weeks was too long for him to go. we were told that he couldn’t give it closer but we told him we knew of others who get it as close as every week.
After fighting with the neuro for months he finally changed it to every 4 weeks and are now finally starting to see a little bit of improvement. we are still pushing to get it even closer like every 2 weeks to see if he will get better results. But we are seeking a new neuro because I feel like I shouldn’t have to fight a doctor to get treatment for my son. everytime I call his staff gives me the third degree and that just isn’t acceptable to me. However, Ryan was only on Prednisone for 2 months our current neuro doesn’t like that drug. He said there are too many bad side effects to it than benefit. But Ryan did benefit from it but I am not a big fan of it myself. As my daughter who is an asthmatic has been on it and has gained too much weight from it and it makes her very aggressive while on it. so she no longer gets it.
We are going to see a new neuro this Tuesday and he is on teh board of this foundation. check with the foundation for a neuro who specializes in CIDP in your area. Dr Richard Lewis (is in Michigan) who we are seeing on Tuesday is suppose to be a top Neuro for this disease.
As for some of your questions about IVIG and getting it at home. We have a home health care company called Walgreens Option Care come into the house and gives Ryan his infusion. we like it a lot better than going to the hospital or infusion center. However, youhave to make sure they take vitals very often and they run it slow. There are some bad home health care companies out there. But your neuro’s office should set it up for you if there are any companies that do it by you.
Ryan also gets migraines and bad ones too. he takes topamax daily and maxalt only when he gets a migraine or when he gets IVIG we premedicate him with it. Ryan premedicates with both of the above and predisone and benedryle before each IVIG treatment and continues them for a week and then weans off predisone over a few more days. But by premedicating he doesn’t get as many migraines and he doesn’t get real sick. some also premedicate with tylenol but ryan can’t because the tylenol causes his red blood cells to break down and causes his biliruben to go up and he turns yellow (juandice).
But if you aren’t seeing any progress in her condition then continue to push for IVIG closer together or get a new neuro that will give it to her. There are so many neuro’s who have the wrong info and don’t know much about CIDP. There are neuro who have never heard of the disease. Don’t let them give it to her once and then quit. Its my understanding that a person needs to get IVIG on a continual basis so they don’t relapse. at first a person might need it often them later when in remission they could get it every 3 to four months but really shouldn’t stop getting it or they will relapse. Our current Neuro is pretty good but I don’t think he keeps up with the reports or treatments of CIDP. So I want someone who won’t hassel us when we bring him new info. he has a God complex, he’s the doctor and we aren’t so he won’t listen to us and and his staff and thats the only problem we have with him and to me its a BIG problem. you have to have a doctor who listens.
So hang in there and continue to advocate for your daughter.
AnonymousJuly 20, 2009 at 11:43 am
I have also learned so much since being on the forum. Emily’s mom and Dawn Kevie’s mom as well as withhope have helped me to see the light. I started googling things like cidp child and reading everything that came up, which was not much. Some of the info is old and some is newer. I used to work on the medical field and so I wanted to read all those research studies where they took like 25 kids and gave them the same tx or different tx and what happened. I printed off the articles that I could get for free and started highlighting things that were interesting or pertinent to our situation. At the end of every article it would reference other articles about child cidp and then I would want to read those. Sometimes it would tell me that I had to pay for thost articles and i did not want to. I inquired at my local children’s hospital about it and they had access and they printed them all for me for free. I have read all those and am now ready to get my sencond batch.
Some of the children were treated with ivig and some with steroids and the oucome of both. We also had to go on a journey and finally found a doctor who agressively wanted to tx our daughter. We have googled his name and his is more than qualified to see our daughter. Dr. Jerry Mendell. He has ordered weekly ivig for three months for our daughter and she is 2. She started looking better after about three weeks of weekly treatments. I contacted Dr. Lewis in Michigan and he said that he does not see peds and referred us to Dr. John Kissel who then referred us to Dr. Mendell. I am so sorry that your doctor does not want to agressively tx. Come to Ohio, we would love to have you and there is an air force base in Mansfield, Ohio. READ READ and then READ and some of the same names and situations will keep coming up and you will begin to see what direction you need to go. My daughter has never been on steroids probably due to her age but we will do whatever for her to get better! I trust Dr. Mendell and you need to trust who ever you go to and rest in that and the Lord’s direction. We are on a journey with our kids.
July 20, 2009 at 5:43 pm
Sorry you have to go through this, but there is a light at the end of the tunnel. My son was 10, now 12 1/2, we have been through many ups and downs, so I would be happy to talk to you if you like so that I could spare you some of the mistakes we have made. I will private message you my # if you like. About the chelation, we have a friend who is VERY into that, she believes in all natural things, positive energy (no microwaves cell phones etc) Each person is different and should or should not do whatever they feel comfortable with. Before I personally would do some other alternative treatment, I would make sure that heavy metals were a possible cause. If the blood test indicated the presence of heavy metals, it would be a consideration. I suspect the test already was done, usually when neurological symptoms occur, there are protocols of tests. Just my uneducated opinion, but chelation would not fix the immune system. When we were first dx, I read so much about hyperbaric chambers and was sure that was the answer, then reality and acceptance set in.
Regarding ivig, it has a full life of 42 days, or six weeks, 3 weeks for a half life. The easiest way to explain it is that is in optimum conditions, so if you are a person with a more active production of autoantibodies, you may need it sooner. that is the part you mentioned of the indiviuality of this disease process. We were getting it every 6 weeks in the begining, once the dx was firmed up as cidp, it went to evry 4 weeks, just to be sure to stay on top of things. It did work, as we now are in a remission of sorts. Now we must differentiate between a medicinally induced remission, or a true remission. We have now started a weaning down to test the waters. To present, we ALWAYS had a loading dose, 2g/kg. For instance, you take your weight in lbs 100lbs/2.2=45kg So a 100lb person would weigh 45kg. to get the 2g dosage, you multiply the 45gX2=90, so 90g would be a loading dose of ivig. It can be given over4-5 days, monthly, every six weeks, weekly, or bi-weekly. For the past 2 1/2 years, we did it monthly over 4 days. Two weeks ago we started a new plan of 2 days every 2 weeks. We did this for a few reasons. The most important was to address the VERY bad side affects Kevin got EVERY time, migranes, fever, chills, puking, body aches for 2 days post. Tommorrow will be the 2nd time we are trying this, last time went good, no reactions. Another reason is that many studies suggest frequency is more important, as it keeps the levels of ivig more constant. the last reason is school, hopefully this way it will only be 2 days a month missed as opposed to 10 days a month when given monthly.
You mentioned headaches, asside from the ivig headaches, Kevin too was plagued with them daily. I have been conducting my own experiment this summer, as I suspected they were stress induced as a result of all of the missing homework. I think that was the reason for the most part, as he has only had one headache this entire summer. I should also mention that he is on allegra as he was allergy tested but came up negative. He did have all of the symptoms of allergies and was thus dx as non-allergic rhinitis. This too has helped w/the headaches, he has not had the puffiness under his eyes or the crease on the bridge of his nose. Something else Kevin has recently overcome as he is repairing is his ability to sleep. In the beginning,he could not sleep.
A touchy subject, steroids. In the begining the doc tried to get us to do steroids and cell cept. I refused. Especially in a child who has not yet gone through puberty. Furthermore, some people with cidp actually do worse with steroids. short term steroids ARE indeed cheaper which is why they are pushed, but longterm studies show that ivig is more cost effective when the complications of longterm steroid use are taken into consideration. this is my biggest fear of the current healthcare reform agenda, cheaper will prevail. That is a whole other topic!!!
About home healthcare, we use it and LOVE it. There was another military member on the site who used the company I used Coram healthcare and she was approved for it. If it were me, I would push for ivig exclusively, start with a loading dose and then 2 weeks later follow up with half of the amount over 2 days, followed 2 wekks later with the other half. That is one of the mistakes we made, although our results from a neuro aspect were great, the long infusion at once was hard from a side affect stance. I would ask at the same time to start weaning off of the steroids to see if ivig alone could work. Good luck and call if you like.
Dawn kevies mom
July 20, 2009 at 5:47 pm
I do not know where Airforce bases are, what are your choices, maybe I or others could help once we know the choices.
Also, thank you for your service, I appreciate all that you do and I realize the sacrafice you and your family make. If I could, it would be my honor to help you any way I can if you would like.
Dawn Kevies mom
AnonymousAugust 30, 2009 at 8:50 pm
Thanks for all the replies – and the info. Payton is doing fine – I think since the beginning of June she has only said she felt tingling and leg pain about twice. However, this only lasted for a few hours. Of course, she JUST told me her left thumb is tingling…
The biggest issue we are dealing with right now is her sleeplesness – she either really can’t get to sleep or refuses to relax and wants to be where everyone else is. I have researched a bit and don’t really see any meds for young kids to assist (other than the infamous Benadryl). So, we are going to set up an appt with child psychiatrist first to see if there are any underlying issues she might be stressed or anxious about. After that, I will reattack wit the neuros to see what they can do.
She hasn’t complained of any major headaches for a while so we have adjusted giving her the migraine meds until she feels one coming on. We have also stopped the Prevacid until she complains her stomach is hurting – like before.
She is still on prednisolone but we are slowly trying to wean her down, with the assistance of the neuro.
Right now we are basically watching her day-today; school is back in session, she is in gymnastics and she has PT once-a-week. So, let’s see how she goes for a while.
August 31, 2009 at 10:37 am
About the sleeplessness, I am sure you already know the steroids can cause sleeping problems. The thing is, I firmly believe the cidp does as well. Obviously there is a psychological component to the stress of the disease that affects sleep, but I just don’t think you can make that go away. Kevin has a HUGE issue with sleep. It is getting better now that he is getting better, is it because the stress level of how the disease manifests itself is better, is it because he doesn’t get rls anymore or as many shocks? I have no idea! I am just glad he is sleeping better. It will be 3 years for us Oct. 3rd. About a psychiatrist, I get nervous that their answer is a prescription. At least with a psychologist, the focus might be on stress management for chronic conditions. BTW, I have noticed that benadryl is a very funny little pink pill. Sometimes it makes Kevin sleepy, other times it makes him more wired?????? Best wishes to you in trying to figure out this very complicated disease!!
Dawn Kevies mom
August 31, 2009 at 10:56 am
I re-read your original post, what is the reason they took her off of ivig? You seem very concerned about the steroids and the affects they are having on your daughter. Rightfully so. You mentioned in your recent post that you are tapering off of the steroids, you will have to find some other form of treatment to supplement with (ivig) typically, steroids would be used in conjuntion w/ivig IF ivig alone was not working. With the info that you supplied on your initial post, it seems as though you feel she wAS NOT getting the proper amount. If she was not, THAT could be WHY you did not get the results you were expecting with ivig. To figure out how much she would get, you take her weight, divide it by 2.2, that would be her weight in kilograms. You then take that number and multiply it by 2 and that would be the total amount of grams she should get per trearment. Typically, the first dose is split over 5 days, then you could cut it down to 4. Something we just figured out, is that it works best for Kevin from a reaction standpoint, to spread the amount over 30 days but administer it every two weeks, for example, he currently (after weaning down over the course of a year) gets 20g for two days every two weeks. Prior, we would do the entire amount in four days every 30 days. The reactions were unbearable. For the last 2 months with our new plan, there have been NO reactions. You CAN get home health care! It would be so much bettter than having to go to a center. Try calling different agencies. As well, if your doc, either primary or neuro, is willing, they could even do it in their office. They would stand to profit, as the mark-up for the drug is HUGE!!! Maybe you could try that angle, it is a win win for both. They get $ and you could infuse closer to home if home health is not available. Somehow you have to convince your doc to add the ivig back in at a full 2g/kg dose. It may be monthly, weekly, or bi weekly everyone is different. Where we are all the same is, there cannot be a lapse in treatment that causes more damage!! The new damage could be worse and you may never get back to what you were. Good luck!! PS, we use Coram health Care, If you want I could find out if they infuse near you. I know our nurse drives 2 hours one way to one of his patients.
Dawn Kevies mom
AnonymousNovember 8, 2009 at 1:58 pm
Payton had a check-up the week of Oct 19th, and since she appeared (on the outside) to be doing quite well – she had energy, was eating well, wasn’t complaining of any tingling, and wasn’t getting hardly any migraines – we really didn’t want to go. Well, we’re glad we did because her nerve conduction showed that while she ‘appeared’ to be fine, her nerves still weren’t regenerating at a good level, and the neuro’s were afraid one muscle in her leg might have even atrophied some, although you can’t really tell in her walk (maybe she’s learned to compensate). Anyway, they gave us an order for more IVIG, but allowed us to finally start receiving them here at home. She needs to get three total treatments (12 total days) before Feb, and then we go back to Augusta for a follow-up.
So, Payton just finished her first round (four days) of IVIG during a ‘home’ treatment. The reason it is ‘home’ is because it was scheduled in such a short amount of time that they didn’t have enough nurses to cover the time actually at our house. However, it was done at a great facility here in town, so that meant we didn’t have to drive 4 1/2 hours to the hospital in Augusta. The nurses were great! I tell you God has truly blessed us so far with great medical care for our daughter. There have been some stressful times but everything always works out in the end.
She’ll have another round the first week of Dec, and again in Jan and we’ll go back to Augusta in Feb for a check-up.
I got promoted this past week and now we are moving – looks like to Sacramento, CA. So, does anyone know of any good GBS-CIDP neurologists in that area? If there aren’t many initmately familiar with the disease, I’m going to ask to be moved somewhere else because I’m not putting my daughters health at risk. Nor am I going to bear all the stress of having to explain to a brand new neurologist all about the IVIG, steroids, etc etc.:mad:
Thanks again for all the info, it has been helpful.
November 8, 2009 at 6:16 pm
Congrats on the promotion. We see a peds neuro in Chicago. He is the chief of peds neuro and we love him. However, if your work takes you to sacramento, it could be easier than you think to get the help you need. The most important thing is to ask your current doc to relay things to the new doc you pick. Cedar Sinai might be an option. Also, your records and interpretation and documentation of the situation will be invaluable, as well as your straightforwardness for your wishes of your daughters care. If you are assertive and well informed, most good docs will listen to you and accomadate you within reason. I have a tabbed binder, the biggest one they sell. I keep sections for test results (always have an extra copy for doc), new info on disease, any correspondence w/docs, hospital records and a question/answer section. Be sure to have all of your records before you leave. To save money, you can sign a release that allows info to go to your doc and then you won’t be charged. Everything, blood, hospital stays ncv/emg reports, all of them, ivig dosing etc. Call me if you like, i would be glad to give you any help I can or that you want. I would love to save you from all of the mistakes we made along the way! PM me and I could sent you my number.
Dawn Kevies mom
PS, we had a wish from MAke a Wish and it was in California, Sandiego/LA area, maybe you could ask your current doc to fill out the paper work to get a wish for your daughter and she could get some special treatment Ca style!
AnonymousJuly 2, 2011 at 10:27 pm
If you can get moved to Whiteman AFB in Knob Noster, Missouri you would be about 1 hour from Children’s Mercy in Kansas City. Our son sees Dr Jean-Baptiste Le Pichon there…they are fantastic. He gets IVIG once every 3 weeks and has regular visits there. Also, my son is 9 and was recently diagnosed with CIDP and is looking for other kids to talk with who deal with the same stuff he does. If you are interested shoot me an email at [private information removed] ..Taylor would love another kid to talk with!
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