Hello to all, not been around in awhile

    • Anonymous
      December 26, 2010 at 6:03 pm

      When things are up, I don’t seem to come around but now the chips are down and I am back. I have a 6 year old with CIDP, onse 8 months, dx. 19 months.

      We do solumedrol, ivig and tomorrow Dell is having an MRI, spinal and blood work while he’s out. I need your prayers.

      I have spoken with Pamela recently and she has been helpful. Dell did 3 rounds of Rituxan a couple years back but no maintenance. I have lots of questions for the neuro.

      Dell had gone from using his walker to walking for about 1-1/2 years without the walker. Now, we are back to the walker and not improving much. The solumedrol drives me crazy, I hate it, but what are you going to do?

      Dell is not the “typical” cidp patient, but I know many of you are not. One thing has always bugged me, his growth. I don’t think he’s even on the charts. Very small and never gains any weight. Dr. is testing for all kinds of weird things.

      We have a wonderful neuro, I owe him everything. He dx. Dell and started him on ivig. We may travel for another opinion but really don’t know where to go. We have already been to Johns Hopkins so where ever it is we go, the man has to be the best in the country or I won’t go.

      Any ideas?

      Thanks, Lori

    • Anonymous
      December 26, 2010 at 7:35 pm

      Lori, I just have a question on Dell’s growth. Do you know where he fell for height/weight percentiles at birth? It would be useful to know that.

      Kids ‘typically’ stay around their birth percentile’s for the most part. So, if he was in the 50%ile say for both height and weight then he typically would be right around that at his age now.

      So, if you know if he was off the bottom of the chart at birth, then it isn’t AS concerning as if he were in the 50%ile at birth.

      Something to check into to help evaluate the degree of the issue.

      Good luck in your search.


    • Anonymous
      December 26, 2010 at 8:33 pm

      Thank you for your reply.

      Dell was 7 lbs 11 oz at birth. My husband’s family are not big ppl. but we have another son who is 14, 5’10-11″ and 170 lbs.

      Dell’s weight started being affected at the exact time he got sick, before his 1 year birthday. He is about 42 inches now and only weighs about 34 lbs. He hasn’t gained any weight in I would say, over a year.


    • Anonymous
      December 26, 2010 at 8:46 pm

      Hi Lori, You actually have to plot out his birth height/weight on the newborn graph….but it sounds as if it is a big change. Would be nice for you to know how much of a change percentile wise though.

      For instance, — was he in the fiftieth percentile for each height and weight at birth, and is now in the “less than 5th percentile” at this point in time? I think you said he was now ‘off the chart’ and that is typically referred to as “less than fifth percentile” (or greater than 95th %ile).

      If he were in the 20th percentile at birth, then the difference obviously isn’t as significant, but it does sound like quite a change….and parent’s heights especially do influence it too. Ideally, you would expect to see a child stay in the same percentile through childhood, but definitely till age 2.

      As you have seen, none of us are ‘typical’ CIDP patients. I wish ou were closer to AZ, my Dr is from [B]Phoenix Neurological Institute[/B] (one of the few US based Centers for Excellence for CIDP/GBS) and [U]EXCELLENT[/U], as is another partner in the group. We have people come from all over the US and Canada and a few from Europe (that I am aware of, or know).

      How is Dell’s appetite? Is that a struggle too, or will eat well & not gain? Try some higher calorie foods, and if you haven’t had a nutrition consult, [U]definitely[/U] insist on one!!

      You have my prayers, good luck tomorrow and I hope you soon get some more answers…ones we all would like, but when it’s your son, I am sure it is even more difficult.

      Thoughts & Prayers to you all,

    • Anonymous
      December 26, 2010 at 10:00 pm

      According to a webpage I found years ago ([URL=”http://noairtogo.tripod.com/prednisone.htm”]http://noairtogo.tripod.com/prednisone.htm[/URL]), growth suppression in children is a known, although not common, side effect of prednisone. The severity of the effect depends on the dose and the duration of the dose. If it is a side effect of prednisone, it is likely to be a side effect of Solumedrol. I cannot speak for the validity of everything on the page, as there is overall source, so you should check with your pharmacist and doctor.

      Godspeed in finding an effective treatment for Dell.

    • Anonymous
      December 26, 2010 at 10:23 pm

      While it’s possible the pred or Solumedrol has affected Dell’s growth, I can tell you that what we see in clinical practice pediatrics tends to be a little different.

      If any effects are noticed, it seems more like weight is normal to heavy and height is low. Dell doesn’t seem to have this issue, –if anything his the opposite.

      Just another thought.

    • Anonymous
      December 27, 2010 at 6:24 am

      Steroids definitely can suppress both weight and height growth as can serious illness. I have definitely seen loss in both height and weight growth associated with steroids and one needs to think about the dose and the schedule of administration if this is occuring and also to think about other reasons that a child might not be growing as well. If the MRI is of the brain, this will include the area that controls hormone production (pituitary). Anyone having one autoimmune problem (like CIDP) has a slightly greater chance of having another autoimmune problem (like low thyroid or intestinal problems) and so thyroid and growth hormone (IGF3 is the blood test) should be checked. It would also be good if he has a few other tests of general body function–such as looking at the salts in his body (electrolytes) and indicators of liver and kidney function (chemistries) by a chem23 or CMP (comprehensive metabolic panel) just to make sure that these are not off enough to affect growth and also that changes in them may give insights into what might be affecting growth. Typically we also do a CBC as well and a urinanalysis for growth failure.

      To answer the question about percentages, he is definitely less than the 5% now in height and weight and birth weight was 50-75%. More importantly, you say that the fell off “his curve” when he got sick. Check and see if he is now growing on a new curve–this is a little less concerning than not growing. You say that he has not gained any weight in a year and this is not growing. If his height percentage and weight percentages are falling, this absolutely needs to be investigated by the pediatrician, one of his specialists, or an endocrinologist. It is really important for children to grow; to not be doing so indicates that something else needs attention–especially if the height percentage falls or the head circumference percentage falls (especially in little kids).

      It is important also to say that the curves are important not just one or two points in time. Kids can fall behind because of illness but grow along a new curve and may eventually catch up again. This is not as worrisome as falling off the curves from no growth at all, but it is still important to watch carefully. My area is helping children with cancer and blood problems and we often see a “temporary” drop in a growth curve with the diagnosis of cancer and treatment, but kids will continue to grow on a new curve. If not, it needs to be investigated well and corrected if possible.

    • Anonymous
      December 27, 2010 at 10:33 am

      After I was diagnosed with CIDP (at age 42), I responded very well to IVIg. There was only one problem — I was tired all the time. After a while, I noticed that I was having a lot of gastro problems. It seemed like eating bland things would be a good idea, but the more I ate (bread, pasta, etc.), the sicker I got. Fortunately, I have a neighbor who was diagnosed with Celiac Disease and she helped me self-diagnose. Later, I found an article, co-authored by the neurologist that I see (Dr. Chin in NYC) that showed a high degree of correlation between CIDP and Celiac Disease (both are autoimmune in origin). One of the effects of Celiac is difficulty absorbing nutrients. This could lead to slow growth.

      Just a thought.

    • Anonymous
      December 27, 2010 at 12:56 pm

      Dells mom,

      If it were possible, I would gladly give Dell a few of my extra inches [6′ 6″] and as much of my weight [290 lbs] as he wants. Since it is not and I have absolutely no medical knowledge to contribute, the only thing I can do is pray for both you and Dell.

      Carolyn and I have experienced some of your anxiety. Patty, our youngest, was born deaf. It was a long uphill battle to teach her to talk.[now we can’t keep her quiet] After many bumps and lumps she graduated college, got a teaching job, a Master Degree and finally a PhD. In the beginning we never though she would be able to hold down a job in the “real world”. Mom, the bottom line is that thing may look bleak now but hang in there and keep fighting, you never know what the future holds.

    • Anonymous
      December 27, 2010 at 12:58 pm

      Lori – I’ve been thinking about our conversation & I did some Googling. I found 2 websites that say the average height of a 6 year old boy is 42 inches. I found another site that says it’s 46.47 inches. So it sounds like Dell is within normal range for that.

      As for his weight, he’s underweight but you know that. The normal weight for a 6 year old boy is around 46 lbs. There might be something to the Celiac’s suggestion. Quite a few people with it don’t gain weight. I would really check into that. I believe we discussed it a few years ago but can’t remember if he was tested for it.

      Dell is on a huge amount of steroids &, like others have said, that really can affect his growth. Have you talked to the dr about lowering the steroids & increasing the IVIG. If Dell is 34 lbs a loading dose is about 30 grams. You said he was getting 15 grams – how often is that?

      Even though Emily received 4 grams per kg per infusion, & that is extremely high, there are reports that state going up to 3 grams per kg is acceptable for children. Maybe that would help him get back on track.

      There are far more serious side effects from him getting all of that solumedrol than there are from him getting loading doses of IVIG.

      While Dell is probably too young for a stem cell transplant have you thought about doing a round of Cytoxan? It’s one of the steps of the stem cell transplant & quite a few people have had good results with it. I can’t imagine it would be any worse than the Rituxan you tried a few years ago.

      As I said on the phone I think you should get him into a holistic dr…maybe look into a D.A.N (Defeat Autism Now) dr. I’m not saying he has autism but the D.A.N dr’s are the ones testing for fungal infections & really looking into allergies. Another part of the stem cell transplant is to take an anti-fungal. I’m trying to find one in my area for Emily to see. (And as a side note – most medical dr’s aren’t very accepting of the D.A.N dr’s. So don’t be surprised if you bring it up to Dell’s neuro & he doesn’t agree with seeing one.)

      I also really think you need to get him into Mayo. There will be a team of dr’s working together to reach a dx. I know you love your current dr but he is just 1 person – at a place like Mayo there will be many different dr’s with different specialties working on Dell’s case. Maybe having a meeting of so many minds will find more answers for you.

      Pamela told me there is a division at the INH dedicated to undiagnosed kids. Maybe they would be able to help you – since Dell’s case is so unique.

      I know you don’t want to have to travel around to different dr’s (and I can’t blame you for that), but I really think you might end up having to. Something worked for Dell before & for some reason it’s not working now. You just need to figure out how to help him again.

      Call me if you need anything. My schedule is going to be pretty hectic over the next few days (we still have family to visit with) but I will be in touch.

      I wanted to add when Emily was on oral Prednisone she gained 11 lbs in the 2 months she was on it. After weaning her off, she didn’t gain a pound for 18 months. The dr’s were concerned but I just figured she gained what she would have in that 18 months during the ‘roid time. And it turns out I was right. After 18 months she started gaining again & is now 76-80 lbs (depending on the scale).


    • Anonymous
      December 27, 2010 at 3:56 pm

      just a little correction since I look at these curves rather a lot–virtually every day. I am not sure about the website where Kelly got the info that the average height of a six year old is 42 inches, as that is the average height of a 4 year plus 7 or 8 months old boy (there are other curves for kids that are shorter like those with Down syndrome????). The average height of a just turned 6 year old boy is 45 1/4 inches and of an about to turn 7 year old boy is 48 inches. A 6 1/2 year boy has an average height of 46.5 inches as the second number Kelly quotes. 42 inches is at the 3% of a just turned six year old boy. Some sites list the 3% or 5% as one wants the height more than this and one worries a lot more about someone not growing than someone growing too much (like Jim and me!). I got this information from the American Academy of Pediatrics growth charts (now from the CDC) that all pediatricians use.

      The average weight of just turned 6 year old boy is 44 pounds and the 5% is 38 pounds. For a seven year old boy 50% is 50 pounds and 5% is 40 pounds. For a 6 1/2 year old boy , the average is 47 pounds and 5% is 39 pounds.
      WithHope for a cure of these diseases

    • Anonymous
      December 27, 2010 at 9:01 pm

      Thank you so, so much for all your posts.

      Dell did very well today during the MRI. He did not want to be put to sleep, we had just done one in May so he remembered it.

      Everything went like clock-work. Did the MRI, blood work and spinal. The doctor was able to spend a good bit of time with us and we are thankful for that. I will sum up what we discussed:

      Thinks the spinal is a little yellow. I thought it looked clear. He “thinks” it will be high.

      Did a PRC (5th disease) test like Pamela suggested. He was happy I suggested it and added it to the blood work immediately.

      Tested for the following:

      vitamin D, T4, TSH, antithyroid antibodies, antithyroid peroxidase AB, anti-P0 IgG , anti GM1 antibodies, anti GD1a antibodies, anti MAG/SGPG antibodies IgM, IgM and IgG antibodies to beta-tubulin and heparan sulfate, anti DS DNA AB, ANA, RF, Ro antibody ( SS-A), La Antigen Antibody (SS-B antibodies), ELISA lyme disease antibodies, VDRL, and H pylori antibodies.

      Dell tested postive for H pylori (including my husband) a couple years ago and was treated with the antibiotics.

      Dr. asked if we wanted to go to the Mayo. I stated when I see him in late January for the results, I’ll tell him where I want to go. I think James Peter Dyck at Rochester, MN but have not totally done all the research yet. I believe he sees peds.

      I will pull Dell’s blook work for past to see what he has been tested for. I believe he was tested for Celiac but can’t remember. I know Kawasaki and Charcot Marie Tooth has been tested but years ago.

      The dr. that recently did the nerve conduction thinks there is another disease involved. I am looking at his report and it says, “demonstrate severe demyelination peripheral polyneuropathy, more likely acquired in view of extensive promixal dispersion, and consistent with dx of CIDP or other childhood demyelinating polyneuropathy, although nonspecific.” I wish I knew how to read one. Might look for something on the net.

      Regarding Dell’s weight and height. Dell does see an endocronologist and I need to get another appt. with him. I just charted him and it looks like below 5%. I remember the endo saying that his weight and height always went together on the chart, meaning one didn’t run away from the other. I think he was satisfied with that but things may have changed, haven’t seen him in about 9 months.

      Dell’s appetite is very good. Eats a good variety of things. I will look into a holistic dr. I’ll call tomorrow.

      After I go through his old papers, I’ll report anything I find. Again, thank you for your prayers and information. He had been doing so well for about 1-1/2 years and it is upsetting to see him not doing well.


    • Anonymous
      December 28, 2010 at 11:56 am

      Just goes to show you – you can’t believe everything you Google. I try to verify info on 2 or more sites. Sorry for any confusion.

      Here are the links I found the height & weight info on:




    • Anonymous
      December 28, 2010 at 1:40 pm

      Kelly, I thank you for taking the time to research things for me. Believe me, I get things screwed up all the time. Especially things I am trying to recall from a past dr. visit, test, etc.

    • Anonymous
      December 28, 2010 at 5:37 pm

      Good job, Lori. Sounds like you are hanging in there best you can!

      Glad to hear all went fairly well.

    • Anonymous
      December 29, 2010 at 9:56 am

      Took Kelly’s advise (Emily’s mom) and found a holistic dr. Well….thought I did. I have written him on net with what our neuro. tested for and wanted him to add fungal, yeast, etc., whatever he thought he’d like to add. Anyway, he wrote me twice about supplements.

      I DO NOT WANT SUPPLEMENTS at this time. I only want blood work and stool reports to take with us to Mayo.

      I’ll try to find another one today.