Overcoming Low Muscle Tone: Professional Help - Doctors

This post is part 5 on the series: Overcoming Low Muscle Tone. If you want to read part 4, Playing at home, please click here.

If you have an overall healthy child, the following may seem like a ridiculous long list of specialists to have to see, specially for someone who is only 2 years of age, but when I read stories of other moms that are going through a similar experience, I often seem to fall short on the list of doctors! By having hypotonia, you may think that only physical therapies are necessary, but there are a number of areas that get affected too, for example, nutrition.

I don't want to overwhelm Patrick with too many doctor visits, and this is the main reason why I have put on hold visiting some specialist in the hopes that he will overcome some of the problems as he grows, without needing to see the doctor. But I don't want to wait too long either, because when it comes to developmental delays, the sooner you take action, the greater the improvements in the child.

a) Medical Specialists

• Pediatrician: The pediatrician is for your child, what your primary family physician is for you. He is your "go to" doctor when your child is not feeling well. If you think that something just isn't right in your child, check with his Peditrician. With his expertise he will be able to give a general diagnosis, and if necessary, suggest to see a specialists, he will tell you which one is the most appropriate and give you referrals. Patrick's pediatrician was the one who referred us to the neurologist, and that was the right call.  (To read about how this particular experience went for us, please click here.)

• Neurologist: We originally saw the neurologist because of Patrick's eye issue, and he mentioned that hypotonia could be a consequence of it. The neurologist was the one who told what is what Patrick has and suggested to get him Early Intervention. (If you want to read about our visit to the neurologist and the diagnosis, please check out this post.) We had to perform a CT Scan to find out what the problem was. Perhaps your child has Down Sydrome, or Cerebral Palsy, or something else, so finding out the reason behind, will make it easier for you to treat the core issue, and possibly help better on his low muscle tone. Perhaps your child has none of that, but you still want to find out the cause and may choose to do genetic testing, CT Scans on your child or other tests.

• Neurodevelopmental Pediatrician: It's important that you have a medical specialist overseeing periodically the improvement (or lack thereof) on your child. Patrick's regular pediatrician doesn't treat any of Patrick's specific issues and even though the neurologist was important to get a diagnosis, he isn't doing any follow-ups. This is why we also see a neurodevelopmental pediatrician at Children's Hospital. They evaluate Patrick every 6 months, and are very knowledgeable of his conditions. At the first evaluation, they suggested we added speech therapies, when we were just applying the "wait and see", thinking he was just a late a talker and would start talking soon. Well, 8 months after that visit, Patrick is still doing approximations of single words. They knew this wasn't just a matter of a bit of a delay, but rather an issue that had to be addressed by a professional. Patrick eventually started taking speech therapist and I can only imagine how much further behind he would be if they didn't have suggested that. 

• Nutritionist: At the second visit with the neurodevelopmental pediatrician, the doctor suggested to see a nutritionist, due to Patrick's low weight. All along I have been trying to give him extra food and give him Pediasure because I know he could use more weight, but I didn't think it was necessary to see a nutritionist. He is too skinny, but so was my husband when he was Patrick's age. Plus, he is otherwise very healthy and very active. He was close to the 30 percentile on his last visit with his regular pediatrician, but what the developmental pediatrician noticed was that his percentile kept going down at every visit. Like I said, I don't want to keep adding more and more doctors to Patrick when they aren't necessary, so before calling the nutritionist, I decided to be more aggressive on his feeding schedule, portions and contents, and I added a general vitamin on top of the vitamin D he was already taking. After 6 weeks, we didn't get positive results. The dev ped was right, he needed professional help. I called last week to make an appointment with a nutritionist at Children's Hospital, but of course the soonest they can do is the end of July. Last week I also read that most kids with low muscle tone and developmental delays have nutrition issues, including low weight and constipation, which Patrick has. The article, which you can read here, explains how important is to address their nutrition in order to get positive results in their development. So now I'm banging my head on the wall for not acting sooner. I will make sure to write a post after the visit to the nutritionist takes place.

b) Therapists

• Physical Therapist
• Speech Therapist
• Occupational Therapist

This is already a long post, so I will talk about each therapist in the next post, likely in the next few days.

Please note that Patrick has also seen a pediatric neuro ophtalmologist to check on his Oculomotor Apraxia, but, I didn't think it should be listed, as this is not related to the hypotonia. Low muscle tone is often a "symptom" of a greater problem, so it's likely that you may need to see additional specialists to treat the core problem.