5 Month Old with Medical Issues

I don't understand why you can't get an appointment for pediatric neurologist, YES I understand the insurance issue, but is no one working on it?? Your regular pediatrician can surely make a referral for you and write a "letter of medical necessity" to the insurance company.

If there is a pediatric hospital or major University Medical Center in your area, maybe you could call and speak to a nurse navigator there and they might be able to help guide you.

Surely your baby's symptoms warrant an appointment, she could be having some type of seizure disorder, maybe the opthalomologist could be of help in the referral process, so you are not waiting for months.

I am so sorry you are going through such an ordeal, my heart goes out to you and your dear baby.

I am so sorry about what you are going through. It must be so hard to see your child like this and seem helpless. You are doing everything right....you are getting help. But I don't think they are not telling you the diagnosis...I don't think they have one. Many many children with issues go undiagnosed, for months, years or even their entire life. Sometimes, they do not fit the criteria of anything. Look up http://www.undiagnosed-usa.org/. My neighbors child and my cousins child are both undiagnosed....however they are getting all the help they can get and that is what matters.

The only thing you can do now is stop worrying about a diagnosis....and keep on being the best mom you can....which you are doing now!

Keep strong :)

Edited: I'll pm you now that your SWH filled in some blanks for me.

yes, I knew something was wrong with my one month old but she was 3 months before we got an answer. It wasn't great because we still didn't know how severe it was going to be but it helped a little to have at least part of the answer.

I personally have never heard of a baby that young getting what i am assumign you are refering to PHYSICAL Therapy. But sometimes it is hard to get into a neurologist.

We had an MRI at 2 yrs. The nurses were nice.

Most hospitals that deal with kid have patient advocates. that can help offer you support and help explain what the doc is saying to you.

It might help people to know if this is your first kid, and what the symptoms are, and why you are waiting so long. this is a nice site to come with questions and get some reassurance.

I'm so sorry, mom. I know you are so worried. I do hope that they can fast-track you into getting an appointment. I think I might call them every day and ask if they have a cancellation they can fit your child into. Maybe if they get tired of talking to you, they will actually put you into a cancellation, or talk to the doctor about opening up a special spot... of course, you would have to drop everything and take her if that happened...

Some of these diagnoses take a long time, D.. Some diagnoses are really made by ruling things OUT, rather than just making a diagnosis based on symptoms. One thing that you will have to understand is that as your child grows, you will just have to keep getting lots of early intervention. You don't have a road map right now - it will come as you continue to work with specialists. If there is a children's hospital in your area, avail yourself of their experts, like a developmental pediatrician. You should also be seeing a social worker. They can help cut through all the red tape and help you get a network of providers. All the hospitals have social workers who are trained to do this, and a children's hospital is usually on the forefront of everything that has to do with kids.

Saying prayers for you and the baby and hopes that you find help soon for her.

I suggest that you call the pediatrician who has already examined her and ask for a referral. If he's already examined her and knows of her condition he most likely would not have to see her again. If he does want to see her insist that the appointment be this week or next at the latest.

I also suggest that you won't have to wait long for an appointment. Doctors know how important it is to diagnose these sort of difficulties early. However, if the appointment maker gives you one weeks away, ask her to speak with someone so you can be seen earlier.

Later: It's unlikely that any of us have had a child with this combination of conditions. I urge you to talk with the professionals about what could be wrong. They can give you ball park ideas. They cannot tell you what specifically is wrong until they do tests.

Professionals may not discuss possibilities unless you ask them to do so. Some parents don't want to know and others do. When is your appointment with the pediatrician? This is a question that he should discuss with you. You could also call any of the other therapists and ask to come in to talk about this.

If you've been willing to talk about this, I'm surprised that they haven't been answering your questions. They can only guess in global ways what could be wrong. I suggest no one can be specific enough to relieve your mind.

This situation is a matter of learning how to accept the unknown. See this as an opportunity to learn new coping skills. Perhaps make an appointment with a therapist for yourself to discuss your anxiety and how to accept the not knowing with less stress.

There should be a way to get this pediatric neurologist appt speeded up. Do you have a regular pediatrician that you see? write down all of your observations that you detailed below and take them to your physician. Ask the physician what the hold up is to the referral. Try videoing some of the things you have been observing in PT, her stare into space moments and examples of when the muscles are floppy and when they are rigid. I think she may be having seizures which need to be addressed immediately. The next time she has this behavior, video it and take her to a children's ER. They will get a consult with a pediatric neurologist right away. There are probably several on the children's hospital staff. Good luck!