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Discussion Starter · #1 ·
I posted a few pages back about DS being diagnosed with hypotonia by his OT and a PT. His issues at this point are poor nursing, low weight gain, and general weakness. He also favors one side of the body--won't bear weight on his right foot, uses the right arm less, kicks the right foot less. This last part is subtle, and we didn't notice it till it was pointed out to us.<br><br>
He saw his ped today for the first time after we were told about the low tone. She seemed pretty worried and has referred me to ped neurology for a cranial ultrasound, workup, and possible sedated MRI. She hugged me twice, which totally freaked me out! (She's never hugged me before!) She didn't say the words "cerebral palsy" but after looking online, I think this is what she suspects. (She also said we need to rule out metabolic disease. She also asked if we had any Scandinavian blood--no idea what that was about.)<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br>
Of course, I am really worried. Any thoughts would be appreciated. FTR, he was a beautiful, uneventful, easy labor and delivery at home. I looked at risk factors for CP and all I can see as possibilities are 1) I have hypothyroidism (moms with thyroid issues are listed as higher risk) 2) I had food poisoning twice and really BAD bronchitis once during pregnancy.<br><br>
He is not extremely delayed. He rolls over well, rests on his elbows when on his belly, and grabs toys easily and gets them to his mouth. The delays in motor skills at this point: he's not pushing up on his extended arms when on his belly, his head lag is still present, and his head control is more like that of a younger baby. I believe he is cognitively fine--he's alert, watchful, interested. Unless you are a medical professional, you wouldn't notice a problem (and even they only seem to notice it after careful observation). I am reading that CP is not degenerative, so if his issues are not that bad now, are we hopefully looking at a milder case? (I mean, if it IS CP. I just feel like that's what she was thinking of, though.)
 

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I know almost nothing about CP, but I wanted to reassure you that Carter's issues at the same age were very similar and he doesn't have CP.<br><br>
I know (oh boy do I know!) how hard it is, but try not to spend too much time out on the net researching.
 

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My son has CP. There's a huge range of issues and severities with CP, every person is different. It's also a very scary word to hear. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
It doesn't get worse, and PT/OT has helped my boy so much. It's pretty hard/impossible to guess how a baby will be delayed, therapists and drs. just don't know. That is a hard part, waiting to see how it all turns out.<br><br>
If you like, pm me.
 

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Oh, and for eating issues, I pumped and refrigerated my milk. When the cream rose to the top, I syringed it off and fed him after he nursed/finished his bottle.
 

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Hi,<br><br>
I was in a similiar situation. I have preemie twins. At 5 1/2 months, my OT noticed my son had interimittent tremors. He had been seeing her for hypotonia. He would lie plastered to the ground, unable to lift his arms, let alone bring them to midline. I took him to a pediatric neurologist. She noticed hyperspasticity in his legs. I also, too, wondered if he had CP, the unspoken diagnosis.<br><br>
The pediatric neurologist told me "cerebral palsy is just a word." "Whether he is labelled CP or not," she assured me, "the treatment is to continue what he has been doing: occupational therapy." As I understood her, CP is more a residual diagnosis. Therapy is done, and only if the children don't improve with therapies, is CP diagnosed.<br><br>
My son made tremendous strides and never received the CP diagnosis. But if he had, he would have simply done the exact same thing as he did -- lots of therapy. Indeed, several months later, the hyperspasticity had resolved.<br><br>
My son also had an MRI with sedation. I chose to have it performed at a Children's Hospital in Chicago instead of at the teaching hospital our pediatric neurologist was affiliated with. That choice gave me a lot of comfort because I knew everyone there -- from anesthesiologists to recovery nurses were very familiar with pediatrics. The MRI itself was uneventful. The hardest part was how traumatized my little boy was having to have an IV inserted. (He was too hypotonic to suck a bottle containing the sedating medicine). I felt good on how attentive the IV nurses were to his emotional comfort during the procedure. My little boy started getting very upset when the EKG prodes were placed on him. The nurse simply put him under at that point, so he wouldn't be so traumatized as he was being prepped. I think that type of compassion is more apt to happen in a Children's Hospital.<br><br>
I know its frightening to be at this juncture. I hope this helps.<br><br>
Purple Cat
 

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Kids with CP <i>do</i> improve with therapies, just not as quickly as a kid w/o CP. It is just a word, and therapies will still be rx'd according to the child's need, PC is correct.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> It is always hardest when you don't know. When you know, whatever it is, you manage and it gets to be ok. It will be ok. But this part is hard. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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I have no business telling other people not Google and not to worry because of course I've done both to excess. That said, stop it. She didn't say CP. She's not qualified to determine that. It is a good precaution to get more tests, but take it one step at a time.<br><br>
It sounds like there are a lot of things NOT to worry about. Overall he sounds like a thriving kid and there is every reason to believe that he is going to be just fine.
 

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Discussion Starter · #9 ·
Thanks.<br><br>
I know I shouldn't be Googling. Can't help it. I think I should have just asked the ped what she was worried about. Honestly, I was so surprised by her demeanor that I was scared to. I've known her for 4 years now and we have been through quite a bit with my older child, but I have never seen her like this. She was saying things like, "Well, we know you have the best parents in the world!" to DS in this sort of strange way, along with telling me, "You're putting a brave face on it, but I know you're upset." She also wants the ultrasound done ASAP--like, tomorrow or Thursday. We vax (generally) and I know she is very pro-vax, but she postponed his vaxes today. All this tells me that she thinks he looks bad or that something very major could be up. The thing is, he really doesn't look so bad to me. I was concerned about him before today, but not like this.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">Carter's issues at the same age were very similar and he doesn't have CP.</td>
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UptownZoo, what does he have, if I can ask?
 

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Oh my loraxc....I think you are the future me almost! As wierd as that sounds, you seem to be just ahead of us on everything you are going through. My dd follow-up ped appt is tomorrow. First one since the hypotonia was dxed. I am so scared. Ped said CP on the first visit as well as CF and a bunch of other things I was too overwhelmed to hear.<br><br>
As I said on another thread, we had a couple of tests last week, so we will get some results tomorrow.<br><br>
My dd has so many of the same symptoms that your lo has, its like they are the same child. I guess thats the great thing about these forums. Her ped also delayed her vax. Physically, she is not quite as advanced...she doesn't push up when on her tummy, can't roll over. She drools a lot and loses liquid when feeding. She never poops.<br><br>
Just remember, there is someone here that knows exactly what you are going through. I am scared and excited about tomorrow at the same time. I wish I was close enough to you for a hug and a cup of tea.<br><br>
How much does your lo weigh? Mine started at 7'15" and is now 11'9".
 

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My son has CP – mildly. Until recently the doctors didn’t say ‘CP’ but we all knew he had it – we simply treated his symptoms. For us PT was very helpful. We started PT at five or six months and later added OT, DT and ST. My son had several risk factors and very different symptoms than your son. We were told by one doctor that although the physical effects of CP do not worsen, we will not know the true effects of his condition until he is older; they said past puberty. This is the most difficult issue for me…worrying if he will have difficulties learning. So far, at four, he is very bright and seems at or above developmental age. He is also doing well physically. As a pp mentioned, the effects of CP can vary greatly.<br><br>
Waiting for answers can be awful. (We were on an emotional roller coaster the past year over another health issue for my son and my daughter.) From your description it sounds as though he c/b fine. I hope all goes well and you receive answers quickly.<br><br>
I’m curious why she asked if you had any Scandinavian blood. My son does - but no one ever asked us.
 

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Discussion Starter · #12 ·
MrT&PrincessP, hugs to you too. I hope you get good news today. He was about 8, 11 at birth and now is 13,10. He was only 10,5 at 3 months so has gained really well in the past 2 months (since we had his tongue tie clipped and started supplementing). He also drools a ton, but he's a 5-month-old, YK? They drool...<br><br>
I suspect she asked about Scandinavian blood because people with that background are more prone to cystic fibrosis. I don't think she knows I was tested for the genes for that and came back negative. I should tell her that.<br><br>
dbsam, thank you for posting. I would love to hear more about what it is like to have a child with mild CP. Yes, waiting for answers is awful. We went through that with DD (she was tested for CF and various immune system disorders before they decided she "just" has asthma, reflux, and allergies) and I practically lost my mind. I can't believe we are getting on this rollercoaster again.
 

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My only experience with CP is I had an Aunt with it (who passed away at the age of 65 a couple of years ago). She was also deaf and had scoliosis. She was able to somewhat communicate.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> please keep us posted. We are here for you.
 

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My son had the same symptoms and they did the MRI ect.. to rule out CP.<br><br>
Seeing the neuro and getting an MRI are pretty standard procedures. The waiting game is the hardest. My ds is now 3 and still doesn't have any diagnosis other than benign congential hypotonia.
 

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Discussion Starter · #15 ·
lil_stinkyfeet, what does your son have and how is he doing now?<br><br>
We have the ultrasound next week, but a ped neurology appointment is not available till, get this, DECEMBER. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/eyesroll.gif" style="border:0px solid;" title="roll"> Uh,great. Given this, the ped will probably order the MRI as well and if the results of any of this look alarming, she'll get us in sooner.<br><br>
She also ordered a hearing test (DS hasn't had one). I am not even a little bit worried about his hearing, though. I'm 100% sure he can hear.
 

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<div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>loraxc</strong> <a href="/community/forum/post/11611056"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">lil_stinkyfeet, what does your son have and how is he doing now?<br><br>
We have the ultrasound next week, but a ped neurology appointment is not available till, get this, DECEMBER. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/eyesroll.gif" style="border:0px solid;" title="roll"> Uh,great. Given this, the ped will probably order the MRI as well and if the results of any of this look alarming, she'll get us in sooner.<br><br>
She also ordered a hearing test (DS hasn't had one). I am not even a little bit worried about his hearing, though. I'm 100% sure he can hear.</div>
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When he was born things seemed off from the begining.. He had torticollis to start with and then we noticed that he wasn't able to hold his head up. I Think he was close to 6mos before he could hold his head up unsupported. He favored his right side, he wouldn't use his left hand at all. He sat unsupported a little past the 12month mark but it was still a while after that before he sat up straight, he was always slouched over.<br><br>
He crawled hands and knees around 13mos and walked at 22mos. He is now 3 and still has problems with low-tone. He was in EI from about 4mos - 2 years. The most noticable thing with him now is that things don't come nearly as quickly or as easily to him as his peers. Any gross motor activites are harder for him.<br><br>
He is also hyperflexible, his ankles roll in and his knees go in too.<br><br>
When he was about 8mos old he had an appt with ped in a different hospital than ours and she told me to not have any more kids and set off all these alarms ect.. She got us in for an MRI within weeks and that ruled out CP. The neuro did say that there was something with the white matter in the brain but he didn't seem concerned.<br><br>
We did a blood panel also looking at various conditions ect.. but mostly the neuro just did the wait and see approach. He wanted to monitor his progress.<br>
I think that was the most annoying part. He never told me IF he would improve. He was basing everything off that, he said if there were not improvements that they would look into a muscle biopsy ect.<br><br>
We did a little more testing last year, for fragile x and a couple other things but to date nothing has shown up. He has a speech language delay, is deaf in one ear and is on the autism spectrum. (most of it is unrelated) but if you look at the bigger picture I think there is a good chance that there is Something going on in there.<br><br>
His only Diagnosis from the neuro was benign congential hypotonia (low tone)<br>
basically he hasn't found any reason for the low tone so they just say there is no reason, which may or may not be true.<br><br>
I wouldn't be comfortable not having anything done until December that is rediculous. I hope that your ped does an MRI before then, at least then they can rule out CP.<br><br>
If your ped orders the MRI is she going to send it to the neuro to read then? I think a hearing test is a good idea anyways. I don't think I would have picked up on my son's hearing loss on my own.<br><br>
Sorry for the Novel
 

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<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>loraxc</strong> <a href="/community/forum/post/11602942"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">dbsam, thank you for posting. I would love to hear more about what it is like to have a child with mild CP. Yes, waiting for answers is awful. We went through that with DD (she was tested for CF and various immune system disorders before they decided she "just" has asthma, reflux, and allergies) and I practically lost my mind. I can't believe we are getting on this rollercoaster again.</div>
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My answer today will be much different than my answer two years ago. My son is doing great and if I didn’t mention he has CP you probably wouldn’t even notice. He is very tight, very high tone, and has pain in his lower body. The pain decreased a lot over the past year. (I've posted previously about his situation. In summary…They thought he had DMD - he doesn't. But his genetic tests came back positive for CMT4F/Dejerine-Sotta. However, the most recent specialist said he believes his pain is a result of the CP and that he is suffering no effects from the CMT.) As a baby he had severe torticollis, at eleven months he still couldn’t roll over both ways. He walked late, but not too late – can’t remember exactly when. We spent tons of time working with him since he tended to use only one side of his body. He didn’t really crawl but pulled himself around with his arms – he is exceptionally strong. It’s strange but those first few years seemed so difficult and I cannot remember the specifics now. He also had severe reflux and cried…all the time. We stopped PT, OT, ST, and DT prior to his third birthday. We started PT again last year but stopped because the PT, through our orthopedic surgeon’s office, was awful – and expensive not covered by insurance. We were taught the stretches by a previous therapist for ‘homework’. We were spoiled because we had fantastic therapists when he was younger. We chose not to do an MRI when he was younger. We knew he had a brain bleed at birth but were concerned about putting him under; especially because he also had breathing issues at the time. According to our neurologists, with a brain bleed you simply treat the symptoms as they are noticed. Right now we are just watching and waiting. Hopefully he will not have problems learning.<br><br>
You mentioned your son is low tone. My daughter, who doesn’t have CP, is low tone. She is still a floppy runner and has difficulty w/some fine motor skills. She also has reduced hand strength and her hand shakes while completing some tasks. We did do an MRI on her because she has epilepsy. All was fine on her MRI. Currently she is in no therapy.<br><br>
Not sure if this helps at all.
 

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<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>loraxc</strong> <a href="/community/forum/post/11600965"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Thanks.<br>
UptownZoo, what does he have, if I can ask?</div>
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Sorry to be so slow to reply. This thread didn't pop up in my user cp for some reason.<br><br>
We don't know what he has exactly. He has lots of diagnoses, but we don't have a name for whatever is underneath it all that's the cause. We backed off our search for a dx about 2 years ago to focus on symptom management, because the dx hunt was tearing us apart. We felt comfortable with that because he was doing pretty well at the time, though now he's having some more struggles and we've tossed around the idea of doing more testing.<br><br>
That said, Carter's difficulties were always, right from the start, more emotional/social than physical, though the physical stuff was the first thing we could get doctors to take seriously. Hypotonia, right-sided weakness, hyper flexibility, expressive language delay, self-regulation dysfunction, and gross motor delay were the first diagnoses (but not really diagnoses; more like "acknowledged symptoms"). Then came fine-motor delay and motor dyspraxia and some other things I don't even remember now. He's been FTT on and off since about 10 months.<br><br>
His gross motor delays are vastly improved now (he'll be 6 in a few weeks). He gets tired easily and is clumsier and more cautious than most of his peers, but he climbs, rides a bike w/o trainers, and can keep up with his friends if it's not too long a period of time. His right leg drags only when he runs, not when he walks. The fine motor delays are another story, but it's not so bad, as much as the people at school want to make out like it's the end of the world! I guess the advantage, though, is it gets him more OT time. He can't write recognizable letters, but he can hold a fork and put on his own shoes. So he'll have to learn to type, I guess. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/winky.gif" style="border:0px solid;" title="Wink"><br><br>
Anyway, like I said, Carter's significant issues are more social/emotional than physical. He has OCD, generalized anxiety disorder, ADHD, and some other, less troublesome issues. I hope you get some answers very soon. I know how awful it is to live with the uncertainty. In those early months of testing, I was an anxious puddle of nerves much of the time.<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/redface.gif" style="border:0px solid;" title="Embarrassment">
 

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Discussion Starter · #19 ·
Thanks, lilstinkyfeet, dbsam, and UptownZoo for posting about your kids. It is really helpful to me.<br><br>
We have been watching DS like hawks since the ped visit, and we actually feel pretty strongly that the only really clear right side deficit is the way he refuses to bear weight on that foot. I truly do not see a difference in his arms. So I hope that's good. He is definitely delayed a month or so in motor stuff, but that doesn't seem like such a big deal (OTOH, maybe at this age it is?)<br><br>
I would like to believe that my kids are just crappy nursers with mild low tone. DD was a crappy nurser too, in virtually identical ways. I also looked up hypermobility and I apparently am pretty hypermobile myself.<br><br>
The cranial ultrasound is on Tuesday; I will post when we know more.
 

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loraxc, our situations are just so similar its eerie. We got our negative CF dx this week! Yipee! The bad news is, she barely gained any weight in the 15 days between appts. The doc said her tone is improving, but is now concerned because it is more mixed. She's floppy some places and tight in others.<br><br>
My ped seems to be taking a very different approach than yours, he is less concerned about neurologics and more concerned with mal-absorbtion and mal-digestion. Does your ds have any bowel issues? We are doing blood and stool tests, hopefully we will get some results this Wednesday at our next appt.<br><br>
DD is too a crappy feeder (on formula due to FTT <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> ) and low tone in her face makes her dribble it out a lot. She is hypermobile as well and also slightly favors her left side. In a very strange and wonderful twist, she can now roll over from her back to front! She just did it the other day and keeps doing it. IMO thats a very good sign. Her head lag is still pretty significant, does your lo have it as well?<br><br>
Good luck tomorrow with U/S
 
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