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My son

Posted by on Jul. 17, 2012 at 8:39 PM
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My son is now 21mths old. He has ha a very rough first 2 years of his life. He was diagnosed with pyloric spasms, severe gerd, severe case of aspiration. At 2 mths old he was put on an ng tube and could not take anything orally. I had to change his tube weekly. The first 2 months all he did was cry 24 7. And they kept tellingly he was colic. It took me a while to find a dr that would listen to me and do some testing. At about 6 mths he showed no signs of aspirating and we were able to give him a bottle and start really slowly start him on solids. At this time my som was behind developmentally bc we were not able I put him on his belly due to how severe his reflux was. He was actually loosing weight and lost about 4 lbs in 2 mths. After changing his mess we finally got it under control. At 9mths we did testing to see if e qualified for therapies and to see how far behind he was by using help me grow. We were put on a waiting list for speech and physical therapy. At this time he was just sitting up by himself without support. No standing up or pulling himself up or making any sounds. So I starting to work with him on standing up. He would stiffen up and I coul not get his body to relax. So we finally started pt and the therapist also made a comment about how he stiffens up. So at his twelve month wellness visit I asked the dr about it bc it wasn't getting any better. She recommended we take him to a neurologist. So I mad the appt and of course it took us forever to get in. My sons GI dr recommended making an appt with a physiatrist which is a muscle dr. So we see the neurologist durst and he tells me that my son has hypertonia which is stiffness of the muscles and orders an MRI. And of course it didn't didn't show anything. The physiatrist put him on a muscle relaxer and said that they are thinking it might be cerebral palsy. My son is now 21 mths and still is not walking and is vocalising a little. The frustrating thing is non of the drs can tell me what the diagnosis is and non of the tests are showing anything. And the only thin we know for sure is that my son has a developmental delay and they do not know what it is. I am so frustrated bc I cannot get the help until we have a diagnosis. My son has special needs and I love him to death and on a plus note he is a very happy boy. I just want to know.
by on Jul. 17, 2012 at 8:39 PM
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Replies (1-6):
andersonmommy2
by Member on Jul. 17, 2012 at 9:16 PM
1 mom liked this

My son had all the similar signs as your son. I have pretty much been down this exact road. They even told us he had cerebral palsy till the MRI came back normal and now with further looking things over and more MRIs, x-rays, and tests they have discovered he has Hereditary Spastic Paraplgia. Very similar signs to cerebral palsy though and a lot of drs misdiagnose it. My son is 2.5yrs old now and he still doesn't walk, so I can understand the frustration. Talk to your dr about further testing and such too. Don't give up!!!

saherman12
by New Member on Jul. 18, 2012 at 11:11 AM
Does your sons arms tremor bc my sons upper body more so the arms tremor and it's kinda gotten worse when he started the muscle relaxer.
kimber2465
by Member on Jul. 18, 2012 at 4:23 PM

i can relate my daughter is 26 years and we STILL DO NOT HAVE EXCAT. but that didn't stopped me getting the help she needs. you just have to push at the dcotors. also contact your early step program. they can help u  get test done and so much more. when we had out daughter tested, she came back with a few of this, some of this but not enough to say this is what we are dealing with. she didn't sit up on her own til she was over 1 year, didn't walk til almost three, chronic ear infections, reflux( even though back then it didn't have a name) we went through several pedi doctors before we got one that would listen to us.

andersonmommy2
by Member on Jul. 18, 2012 at 5:07 PM

 His arms don't tremor but i know that my son has symtoms of dystonia. But symptoms and having it are different. Maybe talk to your dr about it. I konw when they were explaining it to us that it starts in the legs and works it's way up your body to the neck. I seen a girl with type 1 about a month ago and it broke my heart to see her. Her hands tremble and she has spasms in her neck. You may also want to make sure your dr has your son on a small dose of meds so his body can get use to it and then up the dosage as his body gets use to the meds.

Quoting saherman12:

Does your sons arms tremor bc my sons upper body more so the arms tremor and it's kinda gotten worse when he started the muscle relaxer.

 

saherman12
by New Member on Jul. 18, 2012 at 9:42 PM
He has Ben on a muscle relaxer for over 3 mths and it has helped but his tremors
Seem to have gotten worse and on the down side we do not
See the physiatrist or neurologist until oct and nov. so we play the waiting game until then. And of course they want to do another MRI in nov and I hate that we have to do another one. I just the not knowing. I know that being the best advocate for my son is the key and that is what I am doing. It's just hard and you can talk to friends an family but they do not understand how I feel and how hard this is. I do love my son and as hard as everything has been I would not change it. I am great full for my son and all that he has taught me so far. Thank you for talking with me. This has helped
andersonmommy2
by Member on Jul. 19, 2012 at 5:33 PM

 You are welcome. I have been in your shoes and still am. We hate seeing our children hurt and continue to hurt. My son's disease will only get worse it will never get better unless someone can come up with a miracle drug in the near future. So watching him struggle every day breaks my heart. I try to hide it from him so I play with him and try to keep positive around him but when he is  in bed or I watch him sleep that is when I break down and wonder why he had to have this disaese and why it have to be him. But I know God wouldn't have given me this child with special needs if I wasn't special enough to be his mother. Keep your head up, I know the waiting sucks. Our next real apts aren't till end of Oct and one in Nov also so I know I have to wait till then to see what else they pull up their sleeves for him. But he sees some new drs next month to see what they can do with him. I wish you the best of luck and I'm here anytime you want to talk.

Quoting saherman12:

He has Ben on a muscle relaxer for over 3 mths and it has helped but his tremors
Seem to have gotten worse and on the down side we do not
See the physiatrist or neurologist until oct and nov. so we play the waiting game until then. And of course they want to do another MRI in nov and I hate that we have to do another one. I just the not knowing. I know that being the best advocate for my son is the key and that is what I am doing. It's just hard and you can talk to friends an family but they do not understand how I feel and how hard this is. I do love my son and as hard as everything has been I would not change it. I am great full for my son and all that he has taught me so far. Thank you for talking with me. This has helped

 

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