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Living with Polyneuropathy CIDP, GBS, & CMT

Anyone have a young child with gbs/cidp?


#21

Hey, your story gives me hope today. Thanks.

smiles0271 said:

Hello,

I was 7 when I also reacted to the flu vaccine and was first diagnosed with GBS and then CIDP/CIAP. It’s been extremely difficult, for both me and those around me, especially my parents - but be sure to keep her attitude up, even when things are hard, point out all the little things in life that are worth smiling at. My father is a psychologist, and through everything he has been sure to comfort me when I’m upset but also taught me to pick out the little drop of sunlight on a rainy day, and I’ve not only grown stronger physically since, but also emotionally.

It’s so rare, and I only know so much, so I can’t tell you how much the recovery results vary, but it may be of some comfort for you to know that now, 8 years later, the only thing I lack is being able to pull my foot up, causing me to walk a little funny - but even that is coming back, very slowly, and I can run and dance and all sorts of things. I’ve even started ballet. My prayers go out to you, and although I don’t know how much about my recovery process applies to others with CIDP, I’d be happy to answer any questions you have. (:

(update:) After reading other stories, I realize that CIDP stories actually vary greatly - I feel very lucky to have recovered as well as I have.


#22

I was diagnosed last year with CIDP after getting the H1N1 flu vaccine too. But I am in my 40's so not as bad as a child. My daughter who was 7 at the time got the H1N1 on the same day as I did. After i got this horrible disease from the flu vaccine it opened my eyes and my daughter will never get another flu vaccine now. I am so thankful that I was the one affected and not her. My prayers go out to you and your little girl. But she is young and strong and will heal with treatment. I get treatment every 21 days and my life really hasn't changed that much except for mild symptoms and some anxiety of course. But I do everything I use to just a bit slower. Children are amazing at handling things...better than adults so I bet she will amaze you with her attitude and healing powers.


#23

I don't have a child with CIDP I have it myself also from the flu vaccine. If I can help please let me know. I will do whatever I can for you. I am 46 and I know when I told my mother she was terrified especially since she is a nurse.

I will keep you in my prayers and please let me know if I can help.

Tess


#24

I also have a seven year old with CIDP. She presented with full paralysis at age 5 and spent 2 weeks on a ventilator. The last two years have been absolute hell. I'm at my end for things we can do for her, it's so hard seeing the pain she goes through.


Rjohn said:

Hi my 7yr old son was DX GBS with Miller Fisher variant then later on CIDP... It is really hard seeing your kid going through a lot of pain and hardship. We too are praying that he gets better everyday.


#25

hi taracometti im so sorry your daughter is having such a terrible time. is no treatment working at all?


#26

Sorry to hear that about your little girl:( My daughter is still getting ivig treatment now every 4 weeks in 4 months we are going to try 6 weeks, she no longer gets ot and pt she is doing so much better now but i feel like i'm holding my breath because i know cidp can attack her at anytime....would love to talk more with you:) *Amy*


#27

Firstly I am so sorry to hear that your daughter has been diagnosed with CIDP. It is a worrying time without a doubt. There will be days when you are feeling low because I have been there myself, but try and stay positive for your daughter. I am happy to answer any questions or help you to keep positive if you would like! :-)

I have a 16 year old son who has been suffering for just over a year with CIDP, he also suffered with ADEM (Acute Disseminating Encephalomyelitis) when he was 8 years old, luckily he made a full recovery from the ADEM, in both cases the illness started off with pins & needles in his fingers & toes, he has been through so much at such a young age, MRI scans, lumber punctures, IVIG, plasma exchanges, more IVIG, nerve conductions and a nerve biopsy, he is currently taking Prednisolone but due to start taking a new medication called Azathioprine when we receive the results back from his nerve biopsy, he has been such a brave lad & so proud of him because he never complains, to top it all he is currently studying for his GCSEs, as if he hasn't got enough to think about & cope with! He is finding it hard to walk because he can't feel his toes & also finds it hard to write too, watching him trying to get up the stairs breaks my heart. I have to drive him to & from school as he would never manage to walk/bike less than a mile then try & focus on his school work. I am so worried for his future, what he will be able to do for a job etc. It has been so hard to watch your child from being so active playing in their local football team plus doing karate then for them to suddenly stop because they are so unwell.

You aren't alone, happy to chat if you need to. All the best Helen (hjhuggy)


#28

My son (14) has been undergoing treatments for about 1 year. He is able to move around ok, but not long distances. He is on IVIg every 4 weeks and prednisone every other day. He “feels” fine, just not mobile. He exercises on the treadmill daily walking for a little over a mile (plus other weight related exercises). Looking for the day that he can be much more independent. Would love to ear of any progress being made with your son.


New Member - Hello!
#29

Hi my name is Shona from England and have a 10 year old daughter who was diagnosed with CIDP last October. Our young very fit active 9 year old suddenly started to complain of sore legs which to begin with we thought it was growing pains. About a month later we noticed she wasn’t going out as much and started to walk funny. I took her to the docs who told it was more likely growing pains and told us to give her ibuprofen over the weekend and if no change bring her back. They weren’t concerned that by now she was beginning to just drop to the ground in front of us.

So we took her back and was immediately taken to hospital where we had an agonising 7 week stay. At first they thought it was GBS but when she wasn’t getting better they did a nerve conduction test and diagnosed her with CIDP. Straight away she was given immunoglobulin infusion over two days. Two days later her strength was returning and all looked good.

A week later she developed a migraine that was so unbearable even oramorph, brufen, paracetamol and two lots of anti sickness meds wasn’t helping. 10 days later an ophthalmologist was called who saw straight away she had a sever intercranial pressure build up. She underwent another lumbar puncture to reduce this. 8 weeks later she went downhill again. Because Dr’s were unsure if it was the treatment or condition that caused the high pressure she was given immunoglobulin infusion again and again a week later she developed another migraine so underwent another lumbar puncture.

She is now not allowed to have immunoglobulin infusion again and has just not long finished Iv steroids but this is not as good as the immunoglobulin infusion. Now waiting to hear what they are going to do.

It’s so rare I am finding it so difficult to find things out or speak to ppl about it. We take each day as it comes it’s all we can do. I will be asking her consultant about the flu vaccine as this seems to come up a lot although Keira-Louise had hers 6 months before falling ill.

Thinking of you all


#30

I just read your post. My son had severe headaches after his infusions until we slowed the rate of his infusions down. Even though it takes 6 hours, he does very well with his treatments. As far as the vaccine, I would not discount a possible link between the two. Doctors seem quick to dismiss this as a possible cause, but the volume of CIDP patients having contracted the disease after a vaccine is too large to ignore.

Your daughter sounds like she has really had an extremely difficult time of it. CIDP entered our lives like a destructive hurricane. It wreaks havoc on the family and everyday life. Although we are seeing improvement in our son, it is slow and everyday we pray that the progress continues.


#31

Hey

I spoke to her consultant and as you predicted they have discounted it saying only 5% of patients have a link but it’s not big enough to say it’s what’s caused it.

We take each day and so far she’s left with weakness in her hands, arms and fatigues really easily but considering it could be so much worse will take that.

Hope your son continues to progress and improves day by day.


#32

My son is now 18 he was diagnosed when he was sixteen with CMT. He was referred to a muscular dystrophy clinic where about a year later after many test EMGs and MRIs , and a genetics test that took almost eight months to come back. Its been a long stressful road. Not to mention my son also have juvenile rheumatoid arthritis. I always knew something was wrong with my son even as a infant he had special shoes made for his feet. The doctor told me his feet would grow normally and he would be fine. Then when he was in second grade I remember he came home and told me he tried to play thumbs up but, he couldn’t make his thumbs go all the way up. There again i took him back to his regualar peditrician who told me again not to worry that it was just something to do with his muscles and bones hadn’t had enough time to form completly. He assured me it was nothing to worry about and it would be fine as he continued to grow it would stretch out normally. He never missed a check up or a vacination in all of his childhood or teenage years and his thumbs do not go up at all. He has very high arches in both feet and not much reflexes at all. His peditrician just wanted to send him to a hand and a foot doctor when he turned sixteen but, I had heard about a neurologist that was two hours from our home that could probably help us more. So, I took my son to the neurologist and that day he had all kinds of test and scans done. By the time we were done we knew just by the test and family history he had CMT with other auto immune diseases and within a month we had an appointment at the Children’s Hospital where he goes now for IVIG for treatments every month for four days straight. The IVIG isn’t working yet after six months he is now on predisone. This past week he had another EMG done and the results were worse than before he started on the IVIG. Now, we are still going to continue to do IVIG treatments with the added predisone and hope it helps soon. He just started the predisone. I hope you and your family aren’t having to go through the same pain and frustrations of what my son and our entire family have to endure. I still don’t understand a lot of this my self and it seems the more I read the more I worry. I have an eight year old that has shaking in her hands especially the left one. I haven’t had her tested yet but, I think I need to. If you don’t mind how did you know your daughter had CIDP? I have another daughter that also has hereditary neuropathy. Please share your story with me and any advice you may have on treatment options if you have any. Even his neurologist can’t figure out now why the IVIG isn’t reversing his symptoms.