4 year old with CIDP – New to Forum seeking support
AnonymousApril 5, 2010 at 11:41 am
I am new to this forum. My 4yr son was diagnosed with CIDP. It all started in July 09. First we thought it was GBS, then a relapse 7 weeks later in September, next another over Thanksgiving. Each time 7 weeks apart, each time treated with IVIg which has helped and he was reclassified as CIDP.
We have done monthly treatments Jan/Feb/March which have really helped. However, we are skipping this April because the doctor wants to see what would happen so we are nervous about a relapse in May (which would be about 7 weeks from his last treatment). My son hates it, of course at 3-4 years of age he doesnt understand it and I’m really hoping to connect with some of you with younger children to understand things you have done. We are considering a mediport because my son hates the IV in his arm and often it is hard to find a vein or the veins collapse over his two day treatment. I’d like to hear about that from other moms. Really this has been such a hard year for us and I’m hoping I could connect with others who can help. We live in Hoboken, NJ. We are going to Hackensack Medical for treatments but have also seen a doctor at CHOPS. Thanks in advance for your guidance and thoughts!
April 5, 2010 at 12:52 pm
Hi, we were 9 when first dx. I will pm my cell to you if you would like to talk. About the monthly ivig and skipping the next one. You already know he relapses at 7 weeks, it makes no sense to stop all the way. What would probably be a better idea would be to wean down and find his threshold of ivig. Meaning, the least amount he needs to be relapse free. Some literature suggests frequency is more important than quantity of drug. In essence you keep the titered amounts of ivig up making a relapse less likely. The key is to figure out that magic number. By stopping cold turkey, you again initiate an attack and again the imune system gets confused.
What the ivig does is provide antibodies from up to 20,000 different donors. It modulates the imune system by pumping all of these antibodies in and essentially outnumbering the autoantibodies. The autoantibodies are the bad cells that do not get destroyed by our t-cell regulators. So if you stop the ivig, the autoantibodies can once again over produce and start the attack once again on the mylin. Essentially all autoimune disease are the same, exczema, psoriasis, cidp ra, etc. They just pick different sites of self cells to attack. Our bodies decided to attack our myelin sheath and nerves.
Because your son is young, short, as opposed to an adult, healing can be acieved quicker, because there is less legnth to be covered. It is a mm a day, somewhere on a thread I figured out how much that is in a month, try searching. Anyway, every time you allow a relapse, you essentially have to start healing again, back to square one, the toes. Even though his symptoms are visible at 7 weeks, the process starts long before you feel the first affects. You have to stay ahead of things for healing to continue. If you are feeling the symptoms, it probably already started 2-3 weeks prior. We have had loads for 18 months and now are weaning down, 140 grams to now 30 grams. We would get VERY sick, so instead of monthly, I asked to split the total amount for the month into every 2 weeks. We now have NO MORE REACTIONS like before.
About the port, it is a must, the veins won’t last that long in the arm with a child, we would have to re-access by the 2nd day to make it through to the fourth. The port makes it easier. There were some kinks in the begining, but I could tell you the mistakes we made and hopefully they can help make the process smoother. Do you do emla for venous access now? If so, when they put it on his arm, do they use a patch to hold the cream in place, if so, buy Glad press and seal saran wrap, it hold the emla in place and come off much easier that the patch they put on. We can talk if you like. Keep us posted.
AnonymousApril 6, 2010 at 2:39 am
My son was 3 when he first started getting weak….they started him on IVig and he immediately started to recover….we did the whole “wait and see” thing for almost 2 years….each time, doc said…”just call us when he starts to get weak. Well, I told him I wanted to catch it BEFORE he relapsed….he was missing school….getting frustrated, just all around BAD for all involved….now, we get a 36 hour treatment every 5 weeks…and his body is starting to recover. He has reflexes now where there were once NONE…so, that means his body is healing. Granted, he may need treatment for a VERY long time to come…but I need him to have quality of life. By the way, the port is the way to go…..trust me!!!!
I will talk to his Dr. about a smaller dosage…as advised….maybe that will work also.
My number is 209-200-0961. It’s a work number and i habd it out all of the time so it’s a good thing…lol….My name is Linda….anyone who reads this and has the same predicament…please, call. My son is currently under the care of Dr. Strober in UCSF.
Thank you and be strong.
August 8, 2010 at 5:15 pm
Our daughter was diagnosed 10 years ago when she was 5. Dawn is on target with not letting your son relapse. It took us along time to realize this and convince our neuro to admit our daughter more often. She has received over 200 treatments in the 10 years. She just had her 3rd port placement 2 days ago. It has saved her veins. She is now receiving 1gram/kilo of IVIG every 3 weeks. Right now this is working for her.
AnonymousMay 29, 2012 at 1:50 pm
My son became ill 5/1/11 they diagnosed him with GBS. (we were out of town on vacation and ended up after 2 weeks in icu being air ambulanced back to our home state of Texas) After 8 weeks in hospital, being on feeding tubes, ventalator and completly unable to move he finally got well enough to go home. Since then he has relapsed every 3 months. They now say after different tests and watching him go up and down that he has cidp. He get 5 days of ivig every 3 months (or so far that has been the trend). What I dont like is that after the IVig treatment he has no pain and doesn’t have to take a ton of medicaition and is a normal 4 year old and then the dr waits to give it to him again until he is having to taking tons of pain medication to function again and is tripping all over and so weak. Sleeping 12 to 14 hours at night and taking 3 and 4 hour naps, which isn’t normal for him. I am not sure if I should fight harder, go to a different doctor to get it more often or just do what they think is right for my son. This last time in the hospital the finally put a mediport which is supposed to make it easier but so far he fights it. I am so frustrated with the whole thing. Finally glad to find others going thru similar situation.
May 30, 2012 at 2:58 am
Chettri – You need to find a new dr ASAP. The key to treating CIDP is to catch it before symptoms show up. That way healing can happen. Every single time your son relapses more damage is done. He is not being allowed to heal.
IVIG has a full life of 42 days. If you are waiting 3 months between treatments his body has already burned through that IVIG.
I believe there is a Center of Excellence (a hospital the GBS/CIDP Foundation recognizes as a facility that can properly treat GBS/CIDP) in Texas. You need to contact the foundation ASAP to get that info & to get your son into another dr.
May 30, 2012 at 4:04 am
The Center of Excellence in Texas is in Houston:
May 31, 2012 at 10:08 pm
If your son is relapsing that badly @ 3 months, he probably starts @ 4-6 weeks. If your doc does not recognize that he has to stay ahead of the relapse and that at best ivig only lasts a maximum of 42 days, he does not know enough to be treating your son. If he is willing to listen to you and at the very least do every six weeks, the max 42 days then try that if going to other docs is not doable for you. At that time, you will have to watch your son closeley and maybe even have the doc approve every 4 weeks 2g/kg. Just in case you were not told, the port needs to be flushed before your 3 month schedule. Every 30 days, I think you can push it to 6 weeks, not worth itto me thoughto chance it. You mention the port haas not made things easier, what is going wrong? Do they use emla cream? If so, how long do you leave it on? When you put it on, do they give you a tegaderm patch to keep the cream in place? If so, switch to glad press and seal saran wrap. It comes off much easier than a tegaderm.
You have to approach the doc soon or find a new doc soon. Healing takes place at the rate of a mm a day, that is something like 12 inches or something like that a year of healing. But the healing only happens if there is no additional relapse. Once another relapse happens, the healing starts all over from the toes up again. As well, each time there is repair, it is not a full repair, areas are skipped along the nerve and the repair is incomplete.
AnonymousJune 6, 2012 at 11:38 pm
This Doctor is clueless! You cannot play a wait and see game with CIDP without allowing further damage to the nerves. Any decent Neurologist will tell you that. You need a new one ASAP.
Are there other symptoms? Keep in mind they do not know what brings on CIDP and many will tell you it is a post infection response. We learned it is an active one as well.
AnonymousJune 27, 2012 at 3:59 pm
Just wanted to tell everyone, that I have Logan scheduled to see a dr that the foundation recommended August 28th. Since I posted last Logan was back in the hospital and had to have ivig again. He got a ant bite and it turned into a staff infection. The dr thinks it was due to his immuran. He got 5 days of ivig and off he went. I saw his current dr yesterday and they have started monthly IVIG infusions for him because otherwise he is getting weak and getting pain. After telling his nuero my findings and that I was going to another dr he finally started listening and doing research on his own. The new concern is my son’s blood pressure is so high all the time, they say it has to do with the condition. Along with monthly infusions he is going to be wearing a blood pressure patch. Thank you all for you support, it means alot to be able to know people out there are dealing with the same problems.
June 27, 2012 at 5:19 pm
I’m glad you are seeking a 2nd opinion & that your current neuro is doing more research.
Do you know what the flow rate for your son’s IVIG is? An increase in blood pressure while getting IVIG is not uncommon & the rate can be decreased to help with this. I have not come across research suggesting CIDP can cause high blood pressure – but I have not actively looked into that research either. I’m guessing, if the CIDP is the cause, it is because his autonomic nervous system (which controls heart rate, breathing, swallowing, etc) has been affected.
I hope to not scare you with my next statements.
May I ask why your son is also taking Imuran? You may find that after getting him on a better IVIG schedule that he will not need the Imuran. I Googled “Imuran & children” and found a link to the FDA site. Here is the link if you would like to check it out: http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm
It says the use & benefits of using drugs like Imuran on pediatric patients should be carefully weighed due to the increased risk of a rare & fast growing cancer.
AnonymousJune 27, 2012 at 5:55 pm
His blood pressure was always normal until he got the GBS/CIDP. Even when he isn’t getting the infusions it is running high. The immuran does scare me and the Dr doesn’t seem to think its a problem. It will be one of the first things I ask the new dr, espically since he keeps uping his dosage. I agree with the IVIG every month he shouldn’t need Immuran. It is like pulling teeth with these Dr’s. I have to do all the research and then prove it to him. I know they are monitoring my son by doing monthly CBC’s because of the Immuran so hopefully nothing happens.
June 27, 2012 at 8:12 pm
I totally understand where you are coming from. My daughter was 4 when she was dx’d with GBS & later CIDP. Her neuro has never really treated anyone with CIDP before – let alone seen someone with her variant. It took a lot of researching on my part to finally convince him that I knew what I was talking about. Once he finally saw that I had indeed done my research, then he was more willing to listen to me.
I ended up devising my daughter’s treatment plan. I was allowed to do that because I was the one who was with her all the time & I could see deterioration before the dr could. When he finally acknowledged that & we got her on the correct treatment schedule for her, she started improving & hasn’t stopped.
Finding a good dr is key but also finding a dr that is willing to listen to YOU is also important.
Good luck with the new dr. Did you ask to be put on the cancellation list? Then maybe you can get in to see him/her sooner.
June 27, 2012 at 10:53 pm
About the blood pressure, have they looked into POTTS syndrome? Is there any way to get him off the imuran? Steroids are awful as well, but maybe one pulse dose could kick things into action along with the ivig if ivig alone does not do the trick. Every month may also need to be looked at as well, if he is having trouble with the imuron and ivig (ended up in hospital again) it might even need to be closer for a while. Also, some people on imuron get sepsis, maybe the doc will reconsider since he already had the staff infection. Keep us posted, things do get better. We were where you are almost five years ago unable to walk, eat everything and now he is like a regular kid, even stronger than his peers. Don’t give up on what your gut tells you. We will say a prayer for you guys.
AnonymousJuly 25, 2012 at 2:13 pm
Since the monthly infusions started he has been doing good. No ups and downs just getting stronger. He isn’t have issues with pain and all of a sudden his blood pressure has been right where it needs to be. We ever got to cut his medicine down. The imuran scares me so I have been cutting down on that as well until I can get into the new dr, the Dr we have now thinks it is fine but won’t answer my question about the long term affects. I worry about him now but also later if it causes more damage. I am on the cancellation list but I am just greatful it is only a month away. I love seeing him getting stronger but I do fear if he gets anything. We are very careful to keep him away from other kids and sick people.
I have never even heard of Potts, Guess I will look into it.
Thanks for all your support,
AnonymousNovember 30, 2012 at 3:12 am
My son was also diagnosed at age 4. Had treatment and physical therapy for 2 years and got much better. About a year ago started have a slow progression of weakness and clumsiness. Went to his neurologist to confirm he had a relapse of CIDP. Now he gets a steroid IV treatment once a month and doing much better. Feel free to email me at firstname.lastname@example.org. You can also call me and ask any questions you like. I love helping out in any way I can.
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