MarieBrewer Posted May 30, 2008 Report Share Posted May 30, 2008 If any of you have some ideas or know someone who has a similar problem, please share. My grandson (3 mos old) is not using his legs and uses his arms less than average. MD has been ruled out but the next step is an apt. with a neurologist. He\'s overbooked so this is difficult. Anyway, my DDL said Niels doesn\'t use his legs, if you lift his leg he just drops it. I have googled the subject and came up with autism and not much else. He smiles and coos like crazy, but doesn\'t seem to have any muscle action. I\'m not able to sleep because I am so concerned. I can feel DDL\'s sadness when she speaks about him. I know my tears won\'t do anyone any good, but it\'s hard to get it all in control. Unfortunately, I want answers yesterday. Patience is not one of my virtues. Thanks Link to comment Share on other sites More sharing options...
merelling Posted May 30, 2008 Report Share Posted May 30, 2008 I\'m really sorry to read about your grandson. I really understand your feelings about wish to know what this is, and wanting this answer yesterday. Sorry to say that its always take a long time to get a answer, and I understand its not easy to be patient. ( I\'m a public nurse in Norway...). I hope you can get some comfort with your quilting. Link to comment Share on other sites More sharing options...
Quilting Heidi Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, I\'m sorry you are so worried and I think I would be too. I have no experience with that. I think if it were so hard to get in to see the neurologist I would try to get a 2nd opinion from a pediatrician. Link to comment Share on other sites More sharing options...
Mary Beth Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, I\'m so sorry to hear about your grandson. I will be praying for him and for your family. I know how difficult the waiting can be when you want answers. It always seems like the doctors are not as anxious as we are. Link to comment Share on other sites More sharing options...
Gator Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, I to will pray for your little boy. I have no idea what to tell you because I have no idea where things are in SD. Is there a city near you, maybe you could find a specialist there. Maybe one of the children\'s hospital\'s in or near SD could give you help. Wish you were here in Hampton Roads, I\'d go with you to our wonderful Children\'s Hospital of the King\'s Daughters. Link to comment Share on other sites More sharing options...
Bonnie Posted May 30, 2008 Report Share Posted May 30, 2008 Marie....I can\'t even begin to imagine how you and your family are feeling right now, but I do know I too would be scared. About 15 years ago when Siana was a tiny baby, I took in another child to babysit...for money as I felt I needed to be making some while I was home with her, and I have to say that the little boy (he too was 3-4 months old) I took care of was very much like you decribed...he had NO muscle tone...he was head to toe limp like a noodle, you couldn\'t put him in a sitting postion as he would totally slide out of anything you proped him into...his arms and legs would just fall to the floor when you would play with him. I would have to sit on the floor to even feed him as he would even slide out of my arms unless I had a death grip on him. He also seemed to have a hard time keeping his food down...you would feed him, even a tiny bit and he would have projectile vomitting, that would literally shoot across the 12 foot livingroom. After about a month of this I finally told the mom that I needed to go back to work full time and wasn\'t able to take care of him....the first reason was true I did need to have a real job, but secondly I was scare that there was something wrong and I would be blamed for it. I lost contact with them, but they happened to walk into the place that I was working about 5 months later and it was a totally different baby....sitting up playing in his scroller, happy, and in total control of his muscles. I never asked if there had been something wrong, but I\'m sure that the lady would have said something...she was a very very young mom (17) and needed a sounding board more than anything...as she didn\'t have anyone that she could turn to. I have been told that some boys develop slower than baby girls do...was this a normal thing, I didn\'t think so, but the outcome was a great one. I too would get a second opinion regarding this....and if they still feel a neurologist is needed there has to be one some place that takes their insurance and doesn\'t have a long waiting period....and we all know that if the primairy doctor calls the appointments seem to open up better. I would just keep bugging doctors until you get the answers you need. Please Please keep us posted....us aunties, will worry ourselves to death here if we don\'t have answers. Link to comment Share on other sites More sharing options...
Stagecl Posted May 30, 2008 Report Share Posted May 30, 2008 I will keep your grandson in my thoughts and prayers. Maybe you can call the Dr.s office daily to see if there are appointment cancellations and possibly get an earlier day. It may drive the receptionist crazy, but if it works, you\'ll sleep better. Cheryl Link to comment Share on other sites More sharing options...
QuiltsbyNini Posted May 30, 2008 Report Share Posted May 30, 2008 Ditto what Cheryl said. With my son and his Traumatic Brainn Injury, I called three different neurologists daily (sometimes twice a day) until one agreed to see him that same week. Persistence pays off! Will keep your family in our prayers! Nini Link to comment Share on other sites More sharing options...
Neher-in-law5 Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, I\'m sorry I don\'t have any answers for your grandson. I do know that when the primary dr calls to set up the appointment to the other dr. It can be made quickly. When I worked at Mayo (in the dark ages) there were some appointment slots filled only by the dr (sec\'y) for cases like that. I did mapquest to see where Hermosa is, according to mapquest it is only an 8 hour drive or so to Mayo. Then I had to laugh, the map showed Huron and then even Hitchcock where my dad was born. Last I was there they still had a gravel main street. We used to go to family reunions there (the whole town is full of his relatives) and when both sides of the street were full, they parked right down the center. Gotta love small towns. May you have peace and answers soon for your boy. Link to comment Share on other sites More sharing options...
Sams Mom Posted May 30, 2008 Report Share Posted May 30, 2008 Maybe you can get the pediatrician to prescribe some physical therapy. Would probably be helpful and probably can\'t hurt. Good Luck. Donna Link to comment Share on other sites More sharing options...
Bekah Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, I will add your grandson to my prayers. How scary for you. When my youngest child was young they thought she had autisim and one of the reasons was because she was not verbal. Just keep calling. doctors just don\'t understnad how scary things that are out of the ordinary are for parents and grandparents. Take care of yourself during this waiting time. Link to comment Share on other sites More sharing options...
bobbi Posted May 30, 2008 Report Share Posted May 30, 2008 Marie: I know this seems like a really simple answer, - why don\'t you have him checked out by a good chiropractor. He may be able to give you an insight you may not have thought of. Chiropractors are often overlooked when they just might have an answer. I\'m always for a more natural approach than the poke-ing and prodding stuff and pills, etc. Link to comment Share on other sites More sharing options...
JudyLynn Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, I can\'t just sit back either. I want answers and then I find a different place to get them. Have you tried to get into Billings? At least it would be a start. I think as parents, we need to be so pro active, even if it drives others crazy, it is our job to get those answers. And I think also in this day and age, it is all in who you know. Do you know someone in the medical field who could direct you into the right direction. I live in a small town, so having a nurse across the alley and a doctor we call by his first name, it helps. I am not a grammie yet, but my heart goes out to you. Thoughts and prayers to you all. Judy Link to comment Share on other sites More sharing options...
quiltmonkey Posted May 30, 2008 Report Share Posted May 30, 2008 Oh gosh! The "not knowing" is the most difficult thing and so agonizing! I agree with the others-- be persistant about getting in sooner to see the doctor (specialist). Link to comment Share on other sites More sharing options...
PattyJo Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, I will also add your little grandson, Niels to my prayer list. A lot of good advise has been given here, so I can\'t think of anything else to say. God knows how you & your family are feeling, so I\'ll pray that He would give you peace until you can find out what if anything is going on. May your quilting keep you calm for now. Link to comment Share on other sites More sharing options...
lindasewsit Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, Oh, as a grandma, I know the anxiety this would bring. Know that we are all praying here and asking the Lord to give you and yours peace!! I have to say that what Bobbi said is not a bad idea. I work at a chiropractic\'s office and we see even 3 week old babies!! Our doc is great and if he thinks there is something else going on, he sends you to the proper doc or test. Don\'t just open up the phone book and pick one though. Ask around, get some opinions on doctors that others have been too. Keeping you and your little presious one in my prayers! linda Link to comment Share on other sites More sharing options...
RitaR Posted May 30, 2008 Report Share Posted May 30, 2008 Prayers for peace of mind and the right path to follow for answers and care. Waiting is not fun nor agreeable to me either. Be persistant to get an appt. anyone would in your case. Good Luck and God Bless you all, RitaR Link to comment Share on other sites More sharing options...
April W Posted May 30, 2008 Report Share Posted May 30, 2008 I agree with Bobbi, check with a chiropractor. I work for a chiropractor and he has helped several babies with unusual problems from birthing procedures. We had one baby about 3 months old brought in with no mobility in her neck, her head was always turned to the left. After 2 or 3 treatments she started moving her head normally. They had used forceps during birth as the mother was having difficulty delivering. I pray that you find an answer soon. Link to comment Share on other sites More sharing options...
Sheri Butler Posted May 30, 2008 Report Share Posted May 30, 2008 Marie, I will make a phone call to my uncle who is a Dr. specializing in Autism. I\'ll ask him some ?\'s then i\'ll u2u you. Link to comment Share on other sites More sharing options...
quiltnutt Posted May 30, 2008 Report Share Posted May 30, 2008 My prayers are with you. I\'m a firm believer in massage therapy and pool therpy. Check out a good licensed therapist who can do babies. They will give Mom and Dad simple instructions they can do on him when she is not there. Simple muscle streaches are easy. Swimming pools are also wonderful to get the legs moving. Water is bouncy and baby will float. If no pool fill the bathtub up and have Mom sit in tub and hold him up so his body is floating. Have Dad hold his ankles and move the legs in a kicking move. Then let go and see if baby can move them on his own. Keep trying every day for min 15 mins and increase time as much a 5 mins every day til he can move them on his own. I have a pool and did this with all my kids and Gkids. Call another Dr and get him in ASAP. Link to comment Share on other sites More sharing options...
MarieBrewer Posted May 30, 2008 Author Report Share Posted May 30, 2008 Thanks you so much for all of the responses. When DDL gets off work tonight I will call and discuss the chiropractor. They live in Sioux Falls which should have more than one nero. I also plan to call the Shriners Hospital and see what they say. I do feel helpless and know that prayer is all I can do from 350 miles away from him. Ashley has 30 pages of questions to answer b/4 the nero will make an apt. I think a 2nd opinion is a good idea. They aren\'t that far from Mayo in Rochester, MN. Maybe 4-5 hours. I\'ll keep you posted. I always fear for the worst and usually things aren\'t that bad!!! Hope that\'s true here. Link to comment Share on other sites More sharing options...
Melora Posted May 30, 2008 Report Share Posted May 30, 2008 Hi, I Want to assure you you are doing the right thing IF and I say IF there is anything wrong your early intervention makes the difference. I worked ten years with at risk handicapped infants and have a degree in the field. Someone responded some babies just develop slower. This is true. I would be amazed if it were autism if he is engaging with you laughing and cooing. Not the characteristics of most autisms. The motor delays could be easily overcome with motor skill work which if started early has significant impact. (you are sooooo ahead of the ball game !!!!!!!) The first step is what you are doing now, getting a diagnosis. It also sounds like you live in a smaller area ,if so the county should have an outreach that may have a motor specialist who can come to your home and teach you the excercises, you may need to do. But again the first is to get that diagnosis. Then ask strongly for a social worker. If you don\'t click with that social worker ask for another one etc Let me reassure you you are so on top of this and doing an great job!!!! This will significantly impact this childs long term outcome for the better! I will keep you and your family in my prayers. Melora Link to comment Share on other sites More sharing options...
hollyc Posted May 30, 2008 Report Share Posted May 30, 2008 I am a neurology nurse. There can be many causes for hypotonia, low muscle tone. There can be a 3-4 mo wait to see neurologists depending on the area of the country. I would recommend that your pediatrician contact the neurology office directly requesting he be seen soonand most often the neurologist will work into their schedule. The dr to dr thing really works, especially with infants. Link to comment Share on other sites More sharing options...
kennan100 Posted May 31, 2008 Report Share Posted May 31, 2008 Marie, I\'m adding your family and the Doctor\'s to my prayer list! You\'ve received such good advise here, there\'s just nothing I can add to it at all except to encourage you to not give up, keep calling & pushing for appts right away, 2nd opinions, the whole nine yards! Link to comment Share on other sites More sharing options...
hollyc Posted May 31, 2008 Report Share Posted May 31, 2008 please do not go the chiropractor route. There are many causes for low muscle tone, a good neurologist is the safest course. Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.