Hi Sarah The screws on AJ's head are not sticking out too but we can definitely feel them.I am not overtly worried either after reading up old blogs here. It seems its almost normal. I too am hoping that someone with more experience will chime in soon. AJ is doing great thanks...hes crawling now. Teaching him to stand now, his trunk still very weak but hes trying real hard. I am sure we will get there but of course until then its quite difficult. The wonderful thing however, is that you are worried that you might never get there and the next moment you know hes getting on his fours and crawling those few steps...priceless.
Hey, I was JUST feeling Jack's temples an hour ago, I felt what could be screws, and then I come on here and you write the same thing! I think AJ and Jack had their surgeries around the same time, Jack's was January 26th. I am not overly concerned, yet anyway. I remember the surgeon saying it can take a year or more. And the screws on Jack are not sticking out, I was just feeling his head, all the bumps and what not. Hopefully someone with more experience chimes in soon. I hope everything else is going well for AJ :)
Our little Elsa is doing great. She just turned 5 on June 16. Looking back on her pictures from birth til now, you cannot see the same girl. She now runs, there is no holding her back at all! She starts her first year of regular school in the fall and is right with her peers. Here is a YouTube video http://www.youtube.com/watch?v=Q_r5n0M44BM -that is a down syndrome baby on a ball doing exercises I wrote about. You can search You Tube for infant or pediatric physical therapy. Also google infant physical therapy exercises. You can see I am an advocate for physical therapy, I think that anything YOU can help your baby with doesn't hurt! It is hard work for them but once they get used to it, it's not so bad and they notice that it's a help. Take care, feel free to private message me for any other questions!
Hi KalimomThanks so much, it feels so good to talk to someone who has been through this. It's really very reassuring. We reached home in Nepal today so will have to start the exercises religiously now. We do have an exercise ball, and your tips are great, thank you again so v much. I haven't been able to website as such with explicit exercises mentioned but I will try again. Thank you so much again. How old is your girl now? How is she doing?
Glad the results were good. It is tough to see other babies around the same age as your little doing things that your little one cannot do. My daughter didn't start walking until she turned 3 so I definately seen/felt a lot of that. If you can, buy a big ball, like an exercise ball. Those are amazing for therapy. You can lay him on it and roll the ball slightly different ways, encouraging other muscles to work. Sit him on it, doing the same. We have a peanut shaped one which was great too. Both aer great for standing exercises too. We would put toys on the other side of the ball, lay her on it, we would hold her feet, and roll her forward to play with the toys. It helped with her upper body strength. For standing, we'd put some toys on a bench, stand her there, (us sitting behind her) and we'd hold her ankles firm. She would protest a little bit but the toys became a distraction from what she was doing. We used to call all of her therapists "terrorists" because she screamed a lot, it was hard work. There was not a dry eye in the room when she started walking after 3 years of intense therapy. I am sure you can find a website that would show good exercises to do for AJ. Take care, and yes, one step at a time....
Hi KalimomJust hearing of your daughter makes me think just how strong you must be going through it all.....I am not sure of the quality of PTs back home which makes me worry, but I am determined to get him through this too. I was with a friend this evening who has a boy a month younger than AJ, and there he was this little fella, scurrying around the room in his fours, standing and i have to admit my heart did hurt a bit! But one step at a time...
Hi Alan and KalimomFinally some good news, the nerve and conduction and muscle test went rather well, the doc said he has 'beautiful' nerve and his muscles look great! So yes he is hypotonic but nothing related to the muscle and the nerve. We are meeting a physio therapist on Monday to get some tips and ideas about the exercises before we head home on Tuesday! So smiling again more broadly.
Awww, that's tough! At least hypotonia can be worked with. We have been going to physical/occupational/speech therapies for 4.5 years now and my daughter has grown tremendously. And her tone, which I think I said in a previous post, was severe. So severe she required a feeding tube in her stomach. She is not my cranio baby. I hope your test goes well, keep us updated Oh and it's crazy that it's been five months post op! We are that with Jack too!
Hi Archana. Its good news that Aarambha Jyoti's (what a lovely name and I wondered what AJ stood for) surgery has been a success. I am so sorry to hear he has been diagnosed with being Hypotonic. I hope the nerve test goes well as you really deserve some good news! I hope now they have diagnosed the problem they will be able to help AJ. I do not know so much about Hypotonia but what little I have read (Some disorders have a specific treatment but the principal treatment for most hypotonia is physiotherapy and/occupational to help remedy it. I am thinking of you and the family and I hope all goes well with the test. Love from Sweden Al
Originally Posted by Arch Thanks again for your comments. Have found them all so very helpful. We are doing PT but what is OT?. They say they cannot do speech therapy for one so small...so am pretty lost on that front. Is there a website where I can learn more about the kind of exercises needed to be done for hypotonic...one that will show me how? My daughter started speech therapy at age 6 months old. They start with oral motor. OT is occupational therapy, which works more with the smaller things, playing with toys, picking up food to eat, etc. A lot of times, the OT would do the same as the PT, like getting her to stand while playing with some toys. I am not sure where you could find what to do. It's basically play, but with more structure. Your physical therapist should be able to give you more information.
Thanks again for your comments. Have found them all so very helpful. We are doing PT but what is OT?. They say they cannot do speech therapy for one so small...so am pretty lost on that front. Is there a website where I can learn more about the kind of exercises needed to be done for hypotonic...one that will show me how?
Simon was diagnosed with low muscle tone (hypotonia) around the time of his first surgery at 6 months. After the surgery, he started PT and OT about 2 months later, and he quickly caught up. He was also underweight, and he recovered on a ramped up diet. I do not have official confirmation, but I strongly believe that the hypotonia and cranio were related. Have you talked to the neurosurgeon about it?
My son was born at 37ish weeks and started having seizures right after birth. He has diagnosed with hypotonia very shortly after birth (maybe 1 month?) He was diagnosed with cranio at 3 months and had surgery at 5 months. He will be 1 on June 3rd. He's been in PT, OT, & Speech since birth and that has really helped him. I notice a difference after his therapy sessions. He's still not crawling or pulling up but he's trying! The best thing you can do for low tone is get him together with a PT and do the exercises prescribed so you're already doing what you need to do it sounds like. Good luck!!
Hi, thanks for your comment, very useful. AJ is sitting well, eating well, rolled over ahead of his time and can bear weight on his legs. In fact he loves to stand and play...with a bit of support from us as he is a bit wobbly still. We are doing some exercise that the therapist has started him on at home these days. So now he's getting from lying to sitting position with help from us but is learning to take his weight in his arms. Perhaps because he too was 5 weeks early he's just delayed and I am just panicking, but the exercises I guess will do him good anyways. I guess the best thing to do would be to wait what docs say in Vienna.. But your post has been very reassuring and helpful, so thank you again. Will let you know how it goes for him.
Hypotonia is tough, my daughter with special needs had severe hypotonia. Still, at almost 5 years old, has low muscle tone. She started walking at age 3. She also had a chromosonal syndrome though. My son, Jack, who is 9 months old, 3 months post op, was a month early. All of his milestones have been late. He just started eating any baby food, but barely. We actually had him tested and they said he may have a little sensory issue. Two weeks ago he started rolling and sitting. He doesnt have low muscle tone though, he's been bearing weight on his legs/feet since he was newborn! And his neck muscles are great, we've had comments since he was newborn about it. When I told our surgeon my concerns, he had said that it was most likely the fact that he was 'preemie.' And that is what our pediatrician has warned from the get go, to expect delays. Yes, I am interested in how it does for him. You can do exercises for him at home that will help him tremendously, ask your therapist (I am assuming that is who the Physio is) for ideas.
Hi AllisonThanks for posting and sharing the info about your friend's son. We are starting his Physio sessions this evening. He has been diagnosed with mild hypotonia for now, so hoping Physio will help. Will also keep the sensory disorder in mind as well. We will be going back to Vienna in June for his follow up so hopefully we can get a more detailed analysis then, here things are not very developed on that front. Thanks again and will keep posting.
I'm sorry you are facing this. As if cranio wasn't enough! I suppose it could be related. Don't know if this means anything, but I have a friend who has a little boy who was not doing any of these things at 18 months. She figured out he had sensory processing disorder and starting seeing PT who showed her skin-brushing and stimulation that suited his needs. He was walking in a couple of months. Might not be AJ's situation, but certainly something to consider. Hypotonia is a "catchall" term for low muscle tone. It can be caused by many, many things. Has your pediatrician suggested anything? keep us posted on his progress!
Thanks Alan. I so know and understand what you mean....
Hi JanetThanks for your message.I can't imagine how difficult it must have been going through it twice. I don't think I could go through it again and when I read your stories about your experiences I can only admire. I hope Fiona is good now.
Arch. I am so glad you are all home safely. What you have written is really lovely and in a elegant way. Think a big part of me never wants to forget the experience of diagnosis, the waiting for the operation, the operation itself and then Daniels wonderful recovery. I feel the experience has made a better/understanding person... Although I am sure are easier ways for these personal improvements without your child having to through Cranial surgery! Take care and best wishes from a cold and snowy Stockholm : )
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