2 year old with cidp need advise

    • Anonymous
      April 3, 2010 at 11:07 am

      Caysen was diagnosed with cidp in Dec. He has had 4 rounds of ivig, been on steriods since Jan 8, and in inpatient rehab since Jan 25th. We came home March 26th. We have gone from not walking or crawling to crawling then to walking on walker, and back down to not even being able to sit unassisted. Since his last day of ivig, March 26th he is back to sitting and very short walks on his walker, 15 ft maybe, but can not crawl.
      We are new to this forum, but from all I have read since finding this we need a new doctor. Ours is not aggressive enough and has only seen 1 case of this before us. He does have that child in remission, but not making any progress with Caysen. We live close to Lubbock Texas. Closest big cities would be Dallas- Ft. Worth or Okla. City. Has anyone had any experience with a pediatric neurologist or childrens hospital in our area. We have to find someone who has some answers. We will do whatever it takes to get our little guy better.

    • April 3, 2010 at 1:21 pm

      Is your grandchild getting loading doses (2g per kg of weight) How often is he getting the treatments. I have read that children can get 3g/kg. A child on this site at one point was getting 4g/kg. I only have a very tiny bit of your information so I do not know the entire picture. But if possible I would try to get more ivig and no steroids, at such a young age there are consequences. Obviously they may be necessary, but I would try the vig more frequently first. I did not allow steroids for my 9 y/o we did loading doses for about 18 months and have since weaned down from 140g to now 30 grams. We will be getting a ncv/emg repeat to make sure everything is still going good. Keep us posted.

    • Anonymous
      April 3, 2010 at 3:11 pm

      Wish I could give you all the details. But until I found this site, I honestly didnt realize the importance in keeping daily records and questioning our doctors ability. We are losing ground, not what we expected. I do know he gets 2g of ivig daily for 5 days. He weighs 30 lbs. But we cannot get his neuroligist to do them more than once a month. We have had bone scans, nerve tests, nerve and muscle biopsies, and spinal tap which were all sent to mayo. They are the ones who made the diagnoses. They told our dr he could do the ivig once a week until we saw progress, but dr. says thats too aggress for his liking. As I said earlier this is only his second case and he is the only pedi neuro within 500 miles so travel will be the only option. Our dr mentioned last week that he would refer him soon if we got no improvement, but from everything I have read, I think the time is now. We hate the prednisone. He is up to 4 tsp. of 5mg/5ml a day and dr. is possibly going to up them again on monday. I don’t know how high a dose that is. I have nothing to compare to. I’ve not had any reason to learn about dosing of meds before but looks like I’m going to have to learn.

    • April 3, 2010 at 3:55 pm

      I think you are on the right track. A second opinion for the diagnosis itself.
      Also a second opinion about the medication.
      Most Doctors have never even seen certain rare diseases. A young child needs special expert attention.

      E-mail this site [email]info@gbs-cidp.org[/email] to see if you can get a referral near your area.
      Also E-mail the Americal Neurological Association [email]ana@llmsi.com[/email]. Their phone no. is 952-545-6284.
      Check out internet sites in your area and see if you can call a neurologist who has dealt with CIDP in a young child. Maybe a big hospital or a large medical center could give you a referral and you could call and see if they are expert in pediatric CIDP.

      It’s important to act quickly because the nerve damage cannot be completely restored if not treated correctly in a timely fashion.

      I am sure others are going to be responding to your post and will be able to offer other suggestions and I’m sure once you sort them all out you will be able to get speedy help for your child.

    • April 3, 2010 at 5:28 pm

      Y?ou are ten steps ahead of the game, you have been to Mayo, all tests done and nothing else to r/o. Additionally MAYO!!!! has given ytour doc the treatment course. Typically that is how it is done. Mayo makes the dx and works with your doc, they sort of give the directives if you will. Time is wasting. The way I see it you have four options.
      1. Call your doc, tell him you want him to follow Mayos and ninds protocol with the dosing.
      2. If he is not willing, call Mayo and ask them to intervene and see if they will call your doc or find a home health care agency and see if Mayo will write the scrip to them and have it done at home.
      3. Ask your primary care or pediatrician if they will be the prescribing doc under the guidence of Mayo.
      4. Find a new neuro ASAP and ask to speak to the doc and explain that it is an urgent situation with the child declining. Explain you have the dx from Mayo and inquire if they would be willing to follow the directives. If not, don’t waste your time and call the next one.
      If you would like to talk you can contact me by private message and I can leave you my number or you can leave yours.

      BTW a proper dosing schedule would be 28 grams over 5 days. That would be a loading dose. A maintanence dose would be 14 grams.

      30lbs / 2.2 = 13.6 that is his weight in grams, you round it up, so 14.
      For a loading dose you mulitply it by 2, hence the 2g/kg so a load would be 28 grams

      A maint. dose is half, so 14 grams, currently you are not even getting a maint dose (you mentioned 2g every day for 5 days so that is 10 grams total a month) At a maintanence schedule it would be 14 grams and that is only if you are stable, and he does not appear to be near stable. You have to impress to the current doc that time is wasting and damage is increasing and it might not ever be able to be repaired!! Sorry to be blunt but that is the truth. It seems unreal that you have jumped the hardest hurddles by getting the proper dx and treatment plan and the doc is not paying attention!! PLEASE Keep us posted. If worse comes to worse, bring ALL of your records to the ER that your current doc is NOT at and have them hook you up. In a 4 week time frame we went from baseball playoffs and winning the game to not being able to walk, poop, urinate, hold a pencil or button pants and difficulty breathing! Time is of the essence!!

    • Anonymous
      April 3, 2010 at 8:54 pm

      My daughter is the one Dawn wrote about earlier who received 4 grams per kilogram for each infusion. It’s certainly not typical, but that is what took her to get better. She was 4 years old when she was dx’d & about 35 lbs. She received 20 grams of IVIG for every infusion. Her total loading dose (over 5 days) was 100 grams of IVIG. For 2 months she received 20 grams 2-3 times a week. She was on steroids for 2 months but every time the dose was increased she relapsed quicker so we had to slowly wean her off. Steroids do that to some with CIDP.

      There is a dr in Texas who I’m told knows about CIDP. I don’t know many details except it’s a woman & she’s from Texas. Maybe you can contact your local hospitals & ask if they have a female pediatric neuro on staff that specializes in CIDP. A mom I used to speak with, who was from Montana, was in contact with her. She did say the dr was for steroids, so that is something you will have to keep in mind. I wish I had more info for you.

      I have to say I agree 100% with everything Dawn has said. You realize the dr isn’t being nearly aggressive enough & you know it’s time to move on. If I were you, I would research CIDP & children & print out all of the info stating a child can get 3-4 grams per kilogram of IVIG per infusion. You should also print out all of the negative info on steroids (since you are not happy with them). Then put everything into a binder & take it to the dr. Be prepared to argue your point (but be reasonable). If the dr does not listen then it is time to move on.

      I also like Dawn’s suggestion of contacting Mayo & asking them to speak with the dr. He should be following Mayo’s recommendations.

      Since you are new to this, I would also suggest getting a big binder & keeping ALL of his medical records in it. Get copies of every blood test, emg, etc. I also keep a record of every single IVIG treatment. Each bottle of IVIG comes with a sticker that has the lot & batch numbers on it. Each bottle has 2 of these stickers for each category. You should keep a copy & the hospital/nursing agency should keep a copy.

      It’s also important to keep a diary of all of his symptoms day by day. I did this in the beginning & it was a huge help. I would take it to the dr & say “Look 2 weeks ago she felt fine. Now she has X going on”.

      And remember, while CIDP is a very serious illness…he will be ok. It’s scary at first but once you find the right treatment at the right frequency & dose, it will get much easier.


    • Anonymous
      April 3, 2010 at 9:20 pm

      My daughter is now three and was two when she was diagnosed. We went many rounds before we got a diagnosis. Your son is a little more like our situation than some of the other children on the website in that they had to completely learn to walk and crawl and sit up and all that. My daughter got intensive rehab inpatient at the local children’s hospital and could barely walk when discharged. I thought they were going to send her home with this brass walker but they didn’t. We went all around that globe with phone calls and emails and ended up back where we started with a different doctor who has had MANY children with cidp. He has even done some research on cidp and has written a book. He immediately started Selah on weekly ivig at the infusion center at the hospital. It was hard but we did it and when we saw major progress, we really were ok with it. My daughter is a peripheral stick and does not have a port. She has good veins. She currently weighs 32 pounds and gets 7 1/2 grams of ivig every other week, but she got weekly 7 1/2 grams until she came back to baseline as our doctor calls it. It sounds like our doctor and mayo are in agreement and your doctor is odd man out. I am going to private message you with my phone number if you need to talk. You have been given great advice by Dawn and Kelly. They have both helped me so much. I am kind of a researcher and I think I have read everything there is on children and cidp. ha

    • Anonymous
      April 4, 2010 at 12:23 am

      Thanks to everyone for all the info. I have learned more since finding this site than I’ve learned in 2 1/2 months in the hospital. Your concern and help gives us hope. I’m the support for our family but finding support for me is great!

    • Anonymous
      April 5, 2010 at 11:36 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!

    • August 9, 2014 at 5:55 am

      CIDP is more common in young adults, and in men more so than women. It regularly presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes, fatigue, and abnormal feelings.