I wanted to know if any other Parent experienced this and if so, did it ever get any better? My son started to walk at age 1. Well...he started to pull up on things and walk around the furniture holding on to it. We noticed that after a few weeks, he stopped doing it and was getting weak throughout his whole body. We live in grand rapids, mi and the dr. Here acted as if they had seen this for the very first time. Myson is 4 and nothing has been done yet. I am getting really worried and fustrated at the same time. I think i am going to change his doctor and see what another one has to say. If anyone can give me any advice or help, i would really appreciate it.
I did not expect this many replys to my question! I thank each one of you so very much. I will be calling the suggested people and places and i will keep you all informed! Thanks again!
Hello L., Demand a second opinion from a orthopedic specialist who works with pediatrics. This should be addressed as soon as possible. Good luck.
Early On is Michigan's early intervention service. I would call them and they should be able to tell you what to do. http://www.1800earlyon.org/ They will probably refer you to Ken-O-Sha if you are in Kent County. Ken-O-Sha early childhood programs have OT/PT evaluaters who see physically impaired kids all the time. They could evaluate and help refer you to outside help if needed. Or your local school district may be able to help. Early intervention is free by the way if you're concerned about that.
Low town can be metabolic or mitochondrial in nature.
A lot of children on the autism spectrum have low tone. It is related to sensory processing. Call Horizons Developmental Remediation Center in Caledonia for an appt w/ the occupational therapist there.
You're in Grand Rapids -- have you called the Born Clinic there for an eval and some labwork?
I'd sure look for another doctor if I was in your shoes. That's the trouble with conventional medicine; doctors tend to think they know all.
Maybe you should consider alternative practitioners as well, for a balanced opinion. Holistic, that is.
Look for bone specialists in the conventional medicine arena. If you can get a diagnosis, at least that's something to go on. Then if you want to deal with it holistically, that's a start there as well.
hi is he still not walking u need to take him to childrens hospital my best friends baby had symptoms like this she had what is called leighs disease very rare disorder not saying your boy has it but get to a different doc go to childrens hospital
I too would be seeking a second medical opinion. Did this change happen after immunizations? I have heard of major negative changes in babies and very young toddlers after immunizations. I am not suggesting that immunizations are the cause of this change in your son, I was just curious if the change happened after immunizations were received.
M. in Camden, MI USA
You need to get him to a specialist asap. You didnt' say if he is walking now or not. I would think that you could call a neurologist and ask if that is where he should be and if not they will give you a name for a muscular specialist.
You can have your son evaluated by a pediatric neurologist, by a large children's hospital, and by your intermediate school district, to see if there are long-term problems and/or problems that can be helped with physical therapy. sometimes you have to be pretty persistent to get a diagnosis and not all pediatricians are familiar with developmental challenges. Hang in thre, L.!
I would see a specialist immediately. I don't want to scare you... but I had a friend with a baby born with a disease where there was low muscle tone...the baby wouldn't ever develop muscule tone...she died at 3 mos... Her case was very extreme... but the disease usually didn't show up until around age 3-5...it is a form of ALS I think.
***I'm obviously not a Dr....*** But I would get a second opinion soon.
http://www.healthsystem.virginia.edu/uvahealth/peds_neuro...
Before you get freaked out, find a new doctor or see a specialist depending on your insurance. At all well-baby/ well-child check ups, there are goals they should be reaching and as a parent, you would know more than the doctor would.
You're the mom. You know. CHANGE DOCTORS. You also should see a Pediatric Neurologist. Go with your gut.
Do your little one a big favor & what he deserves - a new Doctor. Keep changing if you have to until you find one that will listen to you.
Have you also contacted your local school district & found out if they offer physical therapy. They may also point you in the correct direction.
Good Luck
Take him to see a neurologist. They will be able to properly evaluate him as they are familiar with muscular issues. I have a daughter who experienced something similiar.
I emailed a friend about this since she had a similar experience with her 8 year old. Here is her reply...
My son has Juvenile Dermatomyositis.
Does her son have any type of purplish look
to his eyelids, they say "rash" but thats not how
I would describe a rash. Also, look very closely
at his knuckles, even with a magnifying glass.
Is there any type of little bumps.
My son was diagnosed by a Pediatric Rheumatologist, so maybe
make an appt with one of those.
I'm not sure who she has seen so far, but I know
the neurologists were stumped for months with him, and
within 5 minutes with the Rheumatologist he was diagnosed.
If we had seen the rheumatologist earlier he couldve avoided
an MRI and the surgery for his muscle biopsy."
Her son is doing well, even playing football this year! Good luck.
Take him to U of M or Wayne State. They both have cutting edge med schools and doctors that are awesome. You may also want to seek out a doctor that specializes in bone and muscle disorders.
Hi L. I am sorry to hear you are concerned. I would recommend you follow you instinct. Parents are with their children much more than doctors. Looking for a second opinion is very important. Asking for a referral to Mary Free Bed is probably your best bet. Calling Ken-O-sha and explaining your concerns and asking for an evaluation would be helpful. If you are saying that he is 4 and still not walking you need to move extra fast. If you are still feeling he has low muscle tone I would still recommend that you look for further info. Mom really does know best. I pray you find answers for your concerns. B. in Eaton Rapids
Ask your doctor to refer you to a specialist at the Children's Hospital in Detroit or perhaps at Beaumont or Henry Ford Hospital - you definitely need a diagnosis by now and perhaps there is some therapy or drug treatment that can help - best of luck - Alison
Have you had an orthopaediest look at him? My son has a different problem; he sees Dr. Matthew Halanski at Helen DeVos Children's Hospital and a physical therapist there that he referred him to. Very caring and diligent Doctor in GR. I'm sure if he can't diagnose the exact problem he could help to find the right Doctor for your son's ailment.
Hope this helps.
Jenn
It could be a sensory processing disorder. Here's a link to a symptom check list....
http://www.sensory-processing-disorder.com/sensory-proces...
