Has anyone ever dealt with or known someone with Childhood MS?
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Has anyone ever dealt with or known someone with Childhood MS?
I'm not at that "OMG" worrying stage. Nothing has shown anything yet. We have been told to see another dr. concerning some symtoms my 7 yr old child has been having. The dr told me "keep a journal, and if it doesn't show improvement you need to see a neurologist". She has already given me the referal. I just need to set the appt. Child has been sick, so I am waiting for it to end and hoping it is all related to current virus.
I would have never guessed MS, the dr didn't say MS. She said it is clearly in the nervous system and gave an example of perhaps a pinched nerve. But you know how that look in the eye makes you think there may be more.
On a different late night call w/ current the ongoing illness, I spoke with the "dr on call"...she was stumped by the symtoms (they vary widely) and said the "tingly" symptom is often a symptom of MS, but is very rare in children so she tends to think it is related to current virus only. When I heard "MS" of course I was shocked. However "on call" dr did not have any worries in this area.
So, last night, we are at ER simply because my child has been sick for so long and fever had not left. And there was the "tingly" sensations still going on. My regular dr was the dr on call that night and she said to go to ER just to be on the safe side. Luckily, my child had a chest pain while they were getting her vitals at registration. Man on man were we checked in quickly! We had her in her own bed within 5 min of getting to ER!! LOL. Guess it was because we are dealing with chest pains in a 7 yr old. So anyway, there was no changes in BP or heartrate during that exam.
After being there for only an hour and a routine exam the dr was ready to discharge. I asked him to call our regular dr because she felt there was a reason for us to be there. After that consult, they sent us home with the same info. "must be viral. Keep up w/ the current meds and make sure you call your neurologist." The ER dr does not feel the tigles are realted to the current virus. He did say it sounds like my child has bronchitis now, so that is a new diagnosis.
So here I am suspecting they are thinking MS without saying MS. I do know from my current online research her symptoms match and that only a neurologist can determine if it is MS.
Going ANON because the likely hood it really is MS is rare and I wouldn't want anyone worrying about us for no reason.
I told DH but I don't plan to tell other family memembers until I know something more.
I could only sit on what I have learned for so long before I had to come here and say it outloud. It is a tough thing to keep in your head and not worry. I have concern, but I am leaning towards it not being MS.
I have never heard of a child having MS either, and I really don't have any advice for you, just a lot of (((hugs))). I can really relate to the worry and concerns, because 2 years ago, and before, my son was very very sick and no doctors could figure out exactly what was wrong. He had severe pain all over his body, enough to put him in a wheel chair, he had extremely high (105) fevers, rashes, chest pain, stomach pain, breathing problems, the list of symptoms grew and grew. After going through every possible test, and a lot of speculation as to what was wrong, including the possibility of leukemia, he was diagnosed with systemic juvenile rheumatoid arthritis. Not that this helps you in any way, but I completely understand how you are feeling, and I hope that you have the power to stay strong for your child and for yourself, and if you need any extra support, we are here for you.
Please make the appoint with the neurologist as soon as possible. I have absolutely no idea what might be going on, but I know it will drive you to distraction and despair until you see the specialist. I will keep you and your ds in my prayers.
Oh, and don't put a whole lot of stock in what the ER doctor on call said. A couple of years ago my youngest son went to the Hosp. of the Univ. of PA with severe gastrointestinal pains. The resident who was assigned to him had some films done, and, without blood tests, told him that she thought he either had active AIDS or a particular type of cancer that is (a) fast moving and (b) not treatable (can't remember the name). She was absolutely certain, and didn't see any need to consult with her supervisor.
We went through incredible heartache and anger that evening, and the next morning he called my family doc (who is also his family doc), who had him come in immediately, sent him right over to our local hospital for more tests, compared the films from the ER visit with films taken a few months prior for something else, and had blood drawn for rapid testing. He told my son he was fairly sure the resident was wrong, but would wait for the results of the tests. Three days later that lovely doctor called at 7:00 p.m. to tell my son that indeed, both diagnoses were wrong - he neither had AIDS nor cancer.
I tell you this to show that ER doctors can often be wrong (at least partly because they have no history with the patient), and that I do understand your fear and anxiety.
P.S. That evening, we celebrated by splitting a bottle of champagne I had in the frig. We both paid for it the next morning, but it was worth it.
My husband was sent to a children's hospital "dying from leukemia" by an ER doctor when he was small. The doctor there took one look at him running around playing and said, this child does not have cancer. Turns out he had a severe case of strep and had to have his tonsils removed.
I have had very bad experiences with ER drs. myself. Do not let them give cause to jump to conclusions, but save yourself some heart ache and worry by scheduling an appt. with the neurologist immediately. It may be a small wait before they can fit you in.
I have an autoimmune system that either is MS, or strongly mimics it. It is very difficult for some to get a diagnosis of MS or any neurological problem. But there are lots of less major things that can cause tingling. So stay calm (much easier to say than do when it comes to your children) and make sure not to let your child know you are upset or worried. That will just make things worse. And they pick up on more than you realize.
Hugs. If you need anything, just let me know.
My cousin has MS. I will write to her and ask her what she thinks.
What are the symptoms exactly? My step-brother had a tingling sensation and it was a spinal cancer type "Neural Blastoma". Is she losing any feeling or is she just feeling some tingling?
I realize that my post might make you panic...it's not intended to do that...just asking questions and giving you past history of other people.
I would definitely see a neurologist TODAY.
Ditto, what Ginny said. The neurologist may be more able to put your mind at ease.
I don't know of a child who is struggling with MS. I just wanted to let you know you and your little one will be in my thoughts and prayers.
And, I agree about not putting too much worry into the ER diagnosis. We had my daughter in a couple months ago with breathing difficulties. The doctor who treated her spent some time discussing an older child's chest x-rays with us until he realized he grabbed the wrong film. It was a scary few minutes for my husband and I, as this poor boy was much worse off than our daughter. Just a mistake on the doctor's part. He admitted he was tired and at the end of his shift. She was diagnosed that night with pnuemonia, but we have since learned it was an asthma attack, as our pediatrician suspected based on Lara's history of allergies.
I think Ginny is right, seeing a neurologist might really help you feel better.
I hope you can let us know when you find out more.
Adena, has your doctor checked for Lupus. I say this because a neighbor has Lupus, and while I don't know much, I know it is difficult to diagnose and masquerades or is mistaken for many other things.
Okay well first let me just say, I am so sorry and (((hugs))).
My mother had MS and I have lived with the what if fear for years and it sucks!
But a neurologist does many things. Actually a pinched nerve or herniated disk would also fall under his care. It will probably take several weeks to get an appointment so I would definitly call today to make one.
I did some research into childhood MS yesterday and as you know it is possible, but it is rare. Do you have family with MS? Do other autoimmune disorders run in your family?
Good luck and keep us posted on how things are going.
I have no expierence but just wanted to offer ((hugs)).
Kaye, I don't think it was a blood relative, but an in-law who had MS. My aunt. I need to check w/ my mom to find out. However, I don't want to ask her without raising suspecion since she knows we are having concerns w/ this right now. So I think we are clear in that area. My DH however does not know who his father is, so I am missing that entire line of medical history (his mom doesn't know the father either, so no I can't go about finding out).
As I said, I am not at that OMG worrying stage. I am only concerned and looking for information so I know what I need to know when we see the neurologist.
The ER dr did NOT did not say it was MS or it might even be MS. Nor did our regular ped. It was one of the on call dr's that said "well, that is a symptom of MS, but I doubt that is the case since it is rare in children." My concern only is there because MS was mentioned and all the drs I have spoken with say to make sure we see the neurologist. My regular dr has said there are so many things that can cause these sensations.
If it were just me, I would just say it was part of the current illness and never thought it could actually be something more. You know how it is when you learn of all the bad stuff out there.
I am relieved to see that no one here knows anyone with childhood MS. That makes me feel much better. My post was just a way of my unprofessional research on the topic. Seems there is always at least one mom here who can speak from experience. It is nice to know this is not the case on this topic.
Mrsheidi, no I did not panic with your post. My eyebrows certainly raised and tought "oh no" but I know in the great scheme of things this type of stuff is rare.
After our appt I will give an update. I'm sure it is something simple or at least not critical.
Thanks everyone.
Sounds positive. Honestly I think they will do some xrays of her back to rule out disk issues, but I think actually getting an MRI of her head will take you being proactive. I did a lot of reading last night and it is just very very rare (and completely unheard of 10 years ago). As I mentioned we are the autoimmune family, my son has JRA (not systemic like Jodes, but pauciarticular) and that was tough to dx. Kids just present so differently you just never know. Anyway, good luck and please keep us updated. Also email me if you wish...registerme at houston dot rr dot com
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