Hypertonia - Rogers,AR

H., I have a friend whose twins (who were premature) had hypertonia. And yes, it can be associated with cerebral palsy. (I don't know about the Sandifer's.) There is a big difference in mild CP and full-blown CP. My friend's daughters have mild CP, and they are just fine. They did have to have OT and back then they wore some braces for a while, but they walk just fine.

Regardless of the cause just now, get the OT and do everything that needs to be done for his muscles. Let's hope it's just the reflux issue.

Try not to worry. All worrying does is keep you up at night.

Dawn

Both of my kids had/have Sandifer's Syndrome. My daughter is 2 now and her's is completely gone. But, my son is only 7 months, and his is still present. Basically for us, it was toticullis in the neck with GERD. We used Mylanta, Prevacid, and Zantac for his reflux along with Similac Alimentum for formula because he was sensitive (and still is) to breastmilk, soy, and milk/dairy products. My daughter used the Alimentum and soy, she was not as bad as he is, nor was she diagnosed.

We went to an orthopedist who diagnosed him, ask for a referal to one, because they will tell you for sure what it is. The longer you wait the worse it will be and the harder you will have to work to get it corrected. We go to physical therapy once a week, and we were going to the chiropracter who does cranial sacral massage therapy once a week also, but he has graduated out of that, so now we go every 3 to 4 weeks, but I started treating him at 6 weeks, so it will take longer for your litle guy. Mine also couldn't put his toes to his mouth, and when he hurt he would pull into a "C" shape on one side and his head would fall to one side as well. It still does, but not as badly.

I don't much about cp, but if it is Sandifer's then no one will have heard of it, no one knows what to do about it, but they do know how to treat the components, and that is what you need anyway. Don't wait to get in though, because time really does matter in this case, especially crawling...he has to do that for his muscles to develop correctly and so he's not clutzy later in life. If I can help at all, please message me. Good luck! It sounds scary, but maybe its not so bad. Sandifer's isn't. Take Care!

I don't have much experience for this particular situation, but I would like to say that most doctors give you the worst possible case scenario. They are just trying to protect themselves from lawsuits and making sure that they cover ever possible scenario and make sure your baby is healthy. Also, you saw the N.P not a doctor. No offense to NPs, but they are not doctors. I am sure your baby is fine. When I was pregnant, I had my ultrasound at a major women's hospital. The head of the radiology department performed my ultrasound and was convinced that my baby had downs syndrome and that I should get an amnio. I was worried for the rest of my pregnancy, and my baby was fine. My gyno saw the ultrasound and told me that the baby looked normal and that the radiologist was just covering himself in case their is a slight chance something was wrong with him so I wouldn't sue him. ALso, there are many other signs that a baby may have if they have cerebral palsy. I've read that collicy babies have hypertonia, so I'm sure that is the case with your baby.

I'm a pediatric PT and familiar with what you are reporting. I disagree with one person who suggested an orthopedic surgeon. Hypertonia is a neurologic condition and orthopedic Drs work with bones. They generally don't deal with neurologic issues unless it is severe enough to twist the bones. It doesn't sound like your son's is, however, it is important to get an evaluation from a physical therapist as soon as possible, because sometimes it can get worse the longer you wait. If you can, try to find a pediatric specialist. They are much better informed about hypertonia in children than any general PT and have more specialized treatment rooms.

Since your baby has met all milestones so far, my GUESS is that any hypertonia is most likely due to reflux or positioning issues. This can usually be easily fixed by a pediatric PT (not always by any local PT, though). The pediatric PT most often will do fun activities to loosen up the tight muscles and give you activities to do at home to loosen tight muscles and strengthen weak muscles. 90% of what we do is educating you about what to do at home, so you should be a big part of the sessions. It's great that you brought is up to the n.p. so early. Way to go!

Best of luck!!!