[ksera05]

Does anyone have any experience with hypertonia (high muscle tone)?<br><br>
Sydney has always had high muscle tone in her legs and feet - really tight leg muscles and curled up toes. Once she got past the "preemie low muscle tone" stage, she's been very "strong" and stiff, with good head control and wanting to stand instead of sit since she was very tiny. Her tone in her torso and arms was fairly normal at first but over the past few weeks has become noticeably higher. She's started doing this thing where if you put her on her back she tightens up and her arms go tight and are drawn back and her abs go tight and she does a half "crunch" type thing and can't figure out how to relax unless you help her. I honestly was wondering if I was being paranoid and maybe this was just normal baby behavior until she did this for the pediatrician today - I put her down on the table and she instantly did this. Oh well at least she made my point for me. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngtongue.gif" style="border:0px solid;" title="Stick Out Tongue"> When he saw it you could tell by his face it was not good. We now have the name of a physical therapist to call...<br><br>
Anyway, anyone have any experience with this? Any success stories with therapy? He said this was pretty normal for a 24 weeker, but I'm beginning to get a little nervous about CP...she's not spastic though...no clonus...<br><br>
also, I don't know if I should ask this here or in special needs, but has anyone used both EI and private therapy and have any comparisons they can give me? He suggested I call both but if I had to pick one, to go with private.

 

[Liba613]

With my oldest we only dealt with low tone. With my 9 month old we are dealing with high tone as well (low in the trunk, high in one arm and one leg).<br><br>
First off find out what your private insurance will cover. It will most likely NOT cover what EI will and you don't want to max out those benifits while she is still entitled to EI. When we were in the states our private insurance would only cover 90 days of therapy per condition per LIFETIME. The didn't mean 90 visits either, it was what ever therapy we could fit into three months. EI has no such caps. EI also comes to the house which is nice. You can let the baby nap until the therapist comes, have lunch cooking, etc. No running to appointments multiple times a week and no waiting in germy waiting rooms.<br><br>
Therapy has made a huge difference for both of my kids. My oldest wears ankle braces but at almost 9 is doing quite well. My baby has had to have help learning every stage and step of development, but he is learning and doing with lots of effort and practice. The only thing we don't seem to be able to teach him is how to eat, but God willing that will come eventually as well.<br><br>
I hope you find great therapists and quickly. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">

 

[aris99]

Hi,<br><br>
My dd was hypertonic when she came home from the NICU. She was probably similar in size to Sydney...the neonatologists said she was 26 weeks and she weighed 1lb 10.5oz. We were living in NC and they sent EI out to us w/in 2 weeks of her getting home. We saw neurologists who did an MRI and EEG to check for brain damage as we were guessing my dd would have cp. Then we moved to PA, saw more neurologists...these ones said if she ever walked it wouldn't be until she turned 2 and she would most likely need an assissitive device.<br><br>
We set up therapy w/EI and I cannot agree more w/the pp about the ease and comfort of having therapists see your child in your home. My dd still had neonatal reflexes (moro etc) at 6 mos and she had yet to roll over. Her pt was convinced that she would be a spastic quadriplegic. We kept her on her tummy most of the time to strengthen her trunk muscles and while she slept I carried her in my sling to keep her crunched up. Her therapist was adamant about her not bearing weight on her legs...NO STANDING!!! Somehow at about 9 mos she started rolling over. By the end of her 10th mos she was stiffly slithering forward on her belly, by 11 mos she was actually crawling and it seemed as though the hypertonia was lessening. By 12 mos she was standing! She took her first steps at about 15 mos. She is still somewhat stiff and when she gets mad she's like a book shelf but she has come such a long way. I guess my advice is don't look for a dianosis til your dd reaches 2 yrs. Just focus on reducing the hypertonia...in our case I believe the hypertonia was masking hypotonia but your dd's therapists will probably tell you more about that theory.<br><br>
I was very happy w/EI services. They were competent, respectful and I don't know if my dd would have come this far w/out them. However, I do know services differ from state to state so maybe you should follow your dr's advice but do it quickly because the earlier you start the better the outcome.<br><br>
Hugs to you and Sydney!

 

[fluffypenguin]

EI: depending on your location...EI can be either wonderful or horrible. It all depends on the providers, your insurance, and the funding your local EI program gets. Know that before going into it. For us, we did some EI and some private for Zoe.<br><br>
CP: have they done any brain scans on Sydney? Did the ped refer her to a neurologist? A neurologist consult would be good for the tone and to make sure that there are no underlying neurological causes and to rule out CP.<br><br>
For high tone: After the floppy preemie stage, Zoe had very high tone on the left side of her body and was loose on her right side. She still has some tone issues but they are nothing like they were. One thing that the PT had us do was to do exercises with her every day. I would pump her arms and her legs back and forth 10 times on each side to help work the muscles. We would do something like <a href="http://www.drnathbrachialplexus.com/images/pdf/babyromprint.pdf" target="_blank">this for her arms</a> and we did the same for her legs. Those really made a difference with her. You could start doing them with her while waiting for EI to get set up and started.<br><br>
If she has CP, it is not a death sentence. There are a lot of people with CP who can walk, talk, and lead normal lives. Do not let it freak you out. She and you will be okay. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/winky.gif" style="border:0px solid;" title="Wink">

 

[munkeesmama]

Remember my post about possibly CP? Well, she's now 14 1/2 months and i'm proud to say i highly DOUBT she has cp. Emma does have hypertonia though. He fists are still clenched like a newborn ALOT. When we pick her up her arms and legs go stiff and straight out. OVerall she is just pretty stiff, BUT sahe is cruising along things, crawling, pulling to stand etc. I think it's pretty par for the course with a micro preemie. I'd work on gentle massage and stretching her limbs as you massage also make her REACH for things, this will help those muscles to relax a bit as well. I wouldn definitely seek treatment from an OT though. Sydney sounds so much like em 4-6 months ago it's not even funny. Get her in therapy (there should be something through the county, ask about it) and she'll be fine!