I've been so happy to see my son learn new things and do new things, however; today my spirits are crushed. His PT came to my house once again (which I know he needs) and worked with him. She has asked me TWICE if my son had an MRI in nicu (because of his muscle tone issues). I've recently found out that he and more stiffness in the left side of his body. I asked her if this is from his torticollis, and she has no answers for me. I asked for a referal to a pediactric neurologist today, but it frustrates me to know that I can't get answers..What frustrates me even more is the fact that I was super excited when my son started to crawl, but she dosen't even consider him crawling because he move both legs at once. My son had a normal head ultrasound in NICU and has normal deep tendon reflexes. I see my son's progress no matter what and its so aggrivating to me that no one has any answers. I hate living in the unkown but I want to enjoy my son in this time and I just don't know how to stay focused on the positive when all I see and here from E/I is negative.
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how do I say this..
- By mommyinneed
- Posted July 7, 2009 at 3:13 pm · 26 replies
- In Help desk
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Explore topics in this discussion:
Autism Exercise Anxiety Speech therapy Torticollis Stress Cerebral palsy
26 replies
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- By Henrysmom
- Posted July 7, 2009 at 4:14 pm
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I completely understand where you're coming from. I am also sick of all the negativity... my son is doing great!!! We have been consistently following up with his nicu's follow-up clinic and they are so negative, always fussing about his weight, appts drag on for hrs, never any positive words, and always makes us feel as if we are neglecting our child in some way. My anxiety starts building weeks before the appt.
We finally got a referral for a doctor at another hospital and he was wonderful!!! He was positive, told us what he was thinking, was frank w/out being negative. He also was very interactive with our son, using stickers to exam him (he didn't even know he was being examined!)! This is huge b/c Henry starts getting upset just when we walk into a dr's office.
Our feeding therapist tends to be a bit negative. She does point out positive moves in the right direction, so I guess that helps me get over any negativity. Our PT is good at sticking with a middle ground.
I think part of the issue with all the negativity is that all these drs and therapists have such high expectations (nothing wrong w/ that), but they don't always give these kids the time they need. I also don't think they really "think" about how we feel as parents. It's easy for them to point out what your child isn't doing and what your child needs, but they don't think about what that does to the parents stress level as we are the ones ultimately responsible for making sure our children meet those milestones.
We all know our little ones are wonderful and progressing well! Stay positive!
- By mommyinneed
- Posted July 7, 2009 at 6:29 pm
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Thank you. I just hope and pray that I can cope with the unknown for now. Sometimes I just want to live with my son far away where no one can "label" him. Where he won't be compared to whats "normal" and what normal kids are doing. I know that he's getting help that he needs. I appreciate that. But I also know that their are professionals who encourage you and "professionals" who don't know what to tell you and just metion a bunch of crap about how stiff he or how his trunk has low tone not how well he's doing in other areas. I've got to go because I'm angry. I'm angry with myself, I'm angry with his PT and if I write anymore I'm afraid I might start using bad language.
- By mygirlsmom
- Posted July 7, 2009 at 6:34 pm
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You are so right! My husband and I also use the example of the 2nd day we were in the NICU, this OT came up to us and old us that our daughter had a very stiff neck and would probably have disabilities b/c of it. I was like 1) She's 2 days old! and 2) leave me alone right now, I'm just happy she's alive!
I can't stand it when they don't also tell you the positive about your child is doing. You are right on!
- By beckhamsmom
- Posted July 7, 2009 at 7:49 pm
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Could you get a sencond opinion. We see a PT as part of our NICU Follow Up (every 6 months) on an eval/consult basis. Our PT thru EI is a different therapist who comes out weekly. EI did their own evals. When something related to SLP came up at the NICU Follow Up, I showed the results to EI and advocated that we get more services. Maybe that could be an avenue for you.
What do the NICU follow up specialists think. Ours tend to be very positive, we attribute that to some of them saw our DS in the NICU and know how far he has come.
- By Bklynmom
- Posted July 7, 2009 at 8:24 pm
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It sounds to me like your son is doing great- I've been waiting for Zoe to crawl or at least scoot for a while now but she only goes backwards. My PT and OT are so positive, it must be a personality thing. Even though Zoe had a grade 4 IVH and doesn't crawl or get into a sitting position at 7.5 months adjusted, 10 actual, they just keep telling me not to worry, she's fine, she'll get there, etc. When I ask therapists or her ped. about CP, they just say to stop worrying and diagnosing and let her be a baby.
To be honest, the most negative person in my life is me- I need to stop worrying about what Zoe's not
doing and comparing her to other babies. It's hard though, especially since we're going to visit a couple whose baby was born on Zoe's due date and is crawling up stairs and cruising!
- By Angel13008
- Posted July 7, 2009 at 8:41 pm
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I'm sorry to hear what you are going through. I have some adivce . If were to gotten so hung up on what the docotrs and ECI had to say about Heidi I would never have had the chance to enjoy my precious little Angel. We always knew Heidi wounldt be here for long I dont how I kne I just I did. My advice on ECI is to watch carefully what they and take over dont have them come around . Thats what we did with Heidi if I noticed she was laacking in deveoplemnt I just called and we would do new excersises. Also Just remeber God is always in control no matter what the doctors and eci have to stay God can always turn thigns around. Doctors told heidi would die in days or maybe in a month We took it to God and had her for 11 1/2 months.
Sorry so long
- By jennyrett
- Posted July 7, 2009 at 10:54 pm
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Sorry to hear about your PT. My son has PT once a week through EI. His therapist has been very positive and I think that rubs off on the children. My son started PT at 10 months (8 months adjusted) because he wasn't even rolling over at that point. Within a couple months he began rolling over, sitting, kneeling, crawling and as of yesterday, walking (16 months, 14 months adjusted). All my sons' issues are muscular as well. He is going to be meeting with a developmental therapist through EI in 2 months to determine if he needs speech therapy due to weak jaw muscles. His scans were all normal. Sometimes children just have weak muscle tone.
You are allowed to request a different therapist. The paperwork that EI gave you should state how to go about doing that, who to contact, etc. EI is supposed to be positive and the therapist is supposed to make the child feel positive as well. If you don't think that is happening, it could actually be affecting your child negatively as well.
Good Luck and please don't feel bad about your childs development. I used to compare my son and get upset that he wasn't doing the same things as other babies his age, but then he would flash me that big, huge smile and hug me and I just knew that it was all OK!
- By beclyn
- Posted July 8, 2009 at 1:12 pm
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I am an EI therapist (developmental) and my son is in EI for communication and sensory. In meeting with therapists on both sides of the program, I see things from a unique perspective. However, one general thing I have noticed is the personalities of the therapists go along with what their specialty is. Developmental therapists (not just me....) seem to be more laid back, focus on telling the good (and mentioning the concerns when needed), and the children almost always enjoy the sessons. As you start to get into the targeted areas, things start to get a little more "technical" and therapists tend to ignore what is not in their area. PT's ask a LOT of their kiddos, and it's not "fun". I get my kiddos to work, but it's all in play, so they see it as play and not work to them (even though they are exhausted when I leave). PT's think from the clinical view and not from the view of children learning through play. Most kiddos I work with do not like their PT's. That being said, if YOU are not comfortable with your PT, simply ask your service coordinator if you can switch PTs. Explain your concerns and they may be able to find one who sees things from your point. It's hard to get nothing but bad bad bad all the time. I have some families who get that from their other therapists, and they really love the fact that I will lovingly listen to them and help them in all possible ways. Hope this helps you!!
- By Elijahbaby
- Posted July 10, 2009 at 1:20 am
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My son Jeramiah did not start rolling until close to 7 months old because of his stiffness. He had torticollis as well (he also had a flat head and had to have a helmet). He went into therapy when he was 5 months old so he could learn all of these things. His therapist taught him to roll, sit up, crawl, and currently she taught him to walk. He is 14 months old and is finally working out most of his stiffness. He received an evaluation from a neurologist and he said if he continues to get worse than they will get him an MRI. He said at worst he might have a mild form of cerebral palsy. I have prayed that he will get through this. And I will pray that you and your family get well. I believe Jeramiah's therapist will have good things to tell the neurologist when we go back for another evaluation in August. I know your little one will get well. Especially if you feel there is no real issue at hand. Follow your instincts.
- By Elijahbaby
- Posted July 10, 2009 at 1:20 am
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My son Jeramiah did not start rolling until close to 7 months old because of his stiffness. He had torticollis as well (he also had a flat head and had to have a helmet). He went into therapy when he was 5 months old so he could learn all of these things. His therapist taught him to roll, sit up, crawl, and currently she taught him to walk. He is 14 months old and is finally working out most of his stiffness. He received an evaluation from a neurologist and he said if he continues to get worse than they will get him an MRI. He said at worst he might have a mild form of cerebral palsy. I have prayed that he will get through this. And I will pray that you and your family get well. I believe Jeramiah's therapist will have good things to tell the neurologist when we go back for another evaluation in August. I know your little one will get well. Especially if you feel there is no real issue at hand. Follow your instincts.
- By tanya29
- Posted July 10, 2009 at 1:41 am
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I am sorry to hear what u are going thru with your PT. We have one that comes for my middle son Kevin that is wonderful!! very positive and has been helpful to us in getting us a lot of information. Please ask your service coordinator for a different PT - it is their job to make sure you are happy.
Good luck - your basby is doing wonderful !! have faith and follow your mommy instincts!! they work for me.
Tanya
- By katek
- Posted July 10, 2009 at 2:20 am
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When our son was 2 months adjusted, the home nurse couldn't figure out why he wasn't inch worming or "scooting around" yet. The nurse obviously didn't know anything about correcting for preemies ages. And even without correcting, few 5.5 month olds are "scooting around." Sometimes the "professionals" aren't particularly knowledgeable; and some professionals are better than others.
Our son's favorite therapy sessions were the PT sessions. We had two different PTs. Both had wonderful personalities. They gave us exercise that seemed more like play time than "working out."
I went into the sessions with the expectation that they'd be hypercritical, seeking the perfect positions. Actually, there was only one therapist who was hypercritical, one of my son's OTs. I'm pretty sure that she was straight out of graduate school before getting the OT job. She freaked out when she saw our son bear crawl and claimed that some kids who bear crawl never walk. Turns out there is one famous case study of a family in eastern Turkey; a few of the kids never learned to walk but bear crawled. A case study, of course, is not proof of causation (a small fact missed by the young OT). She meant well, I'm sure. Incidentally, the same OT freaked out when she saw how often our son refluxed after eating. I felt like saying "Welcome to the real world of preemies!"
Some therapists and medical professionals are better than others. I think that when they don't truly have answers, they tend to give worse case scenarios. It is probably better that they do that even if it makes for hard listening. It certainly doesn't mean that every worse case scenario will come true. And it does provide some motivation to track down the medical professionals who may have more insight.
- By alang
- Posted July 10, 2009 at 6:59 am
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Henrysmom,
Is the sticker doctor Dr. Alexander at UNC? We have seen him too. Super nice guy.
- By Henrysmom
- Posted July 10, 2009 at 7:44 am
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alang,
Yes, it is Dr. Alexander! I was very impressed!
- By mommyinneed
- Posted July 10, 2009 at 9:47 am
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I'm taking my son to a neurologist but his appointment isn't until october! His PT is the only one for the area. And the funny thing is my son LOVES her..I just don't...lol..My son rolled at 5 months, and he still has some trouble sitting at 12 months adjusted. he can sit but his back isn't straight most of the time. Low trunk tone and stiff legs is to blame for this. Which we are working on. My son just started receiving EI and I believe this is the reason why is so behind at 14 mos. I will say this though...I am going to work with my son as much as I can between now and october! I'm terrified of the neurologist because I don't want him to tell me my son has cp. When to this point at 14 mos every developmental pediatrician has told me not to worry about it. My son's PT is not a positive person. But she is matter of fact.
- By aplus67
- Posted July 10, 2009 at 10:25 am
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My daughter was born at 25 weeks weighing only 15.5 oz and given a 5% chance to live. Now at age 5, she is the National Ambassador for the March of Dimes and brings joy to every person who meets her. She had a Grade 1 IVH, other lesions on her brain that resolved, and a major bleed in the left cerebellum which pretty much destroyed it. We didn't find out about the left cerebellum until she had been in the NICU for 3 months (ultrasounds don't penetrate that deep in the brain). She was diagnosed with slight CP on the left side of her body. What helps me is to remember that CP is just a label - it does not define your child or what they can do. Katelyn has beaten all the odds. The results of her CP are barely noticeable. She is developmentally delayed and is not caught up, but is always progressing and she may catch up to her peers one day. She is on Katelyn's developmental schedule, which is not documented in any books. What helps me is to compare Katelyn to herself. I have adopted this attitude with all our therapists and doctors as well and most of them have responded well. I try to keep in mind that it is their job to identify and help us work on the deficits. Every day I see something that amazes me for kid who is missing her left cerebellum. It amazes me to see how far she has come. She didn't start walking until she was 3 and talking until she was 4, but she is making up for lost time now. And when she is older no one is going to be asking her how old she was when she started walking and talking. I'm just happy she continues to progress. I understand your frustration as I have felt it many times. But, hang in there and try not to let the CP label scare you.
Ashley
- By mommyinneed
- Posted July 10, 2009 at 11:56 am
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wow, way to go Katelyn! What an inspiration! God is good :) Your daughter is beautiful, you are so blessed that your daughter has surpassed all of the odds.
thank you
- By Henrysmom
- Posted July 10, 2009 at 12:53 pm
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Thank you Ashley! What a great perspective to have! You're right... when our kids are older no one is going to ask at what age they walked or talked! I also agree that Henry is on his own developmental schedule. I know without a doubt that he'll do all the things he's supposed to, it just may take longer and he may need a little help along the way!
- By fiaryangel24
- Posted July 10, 2009 at 1:06 pm
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OK my daughter was 24wk baby... she have the same problem with her left.. and IVH is on her left side she have grade 1 and 2 is all in the left side. so don't worry she know playing with her left side.. so it take a wile but with allot work he can do anything.
- By aplus67
- Posted July 10, 2009 at 1:54 pm
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Henrysmom,
I have no doubt that Henry will do all the things he is supposed to in his own time and with your loving help. I remember all those times I wondered if Katelyn would ever walk or talk and even though it took a lot of work and a lot of extra time it has made it that much more special for us to witness. These preemies are tough and they are determined and they don't let anything get in their way. Now, I find myself wondering if she will ever be potty trained. That is our latest battle! I keep imagining her going up to accept her high school diploma in her pull ups. He he. I know she will do that in her own time too, but I sure am ready for it to happen now. :-)
Ashley
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