5 Month Old with Medical Issues

Updated on May 19, 2013
D.S. asks from Allendale, MI
6 answers

NEWS UPDATE WE GO TO OUR PED THURSDAY !!!!!! YIPPEY !!!!!!

HELP !! I have a 5 month old baby who has been in pt for over 3 months now and the pt has me very worried yet nobody is giving me any answers !!!! YES IVE ASKED !! I understand nobody can give me a "diagnosis" BUT, maybe some help to releive my stress untilll we see the neurologist....very worried mom...Has anyone been thur this???
Due to insurance we HAVE to have recomendation to go to pedciatric neurologist..this is why its taken so long... i have had her to the dr since she was less than a week old repeatedly ...pt and early on and everyone just NOW agreeing she needs to see neurologist..

What can I do next?

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So What Happened?

UPDATE UPDATE !!!!!!!!!!!
we took baby to a neurologist and they feel from all the paperwork and information from drs and pt, that she has epilepsy and colonic seizures...... They did a eeg, but that was inconclusive due to she would not sleep as the process hurt her little head but they based it on her medical history.....
AT LAST some answers !!!!!!!!

My child was seeing early on at a few weeks old... we both had been noticing things not right with my little one and in turn they got us into physical therepy and set up an apointment with a vision therepist who then set us up apt with pediatric optamoligist ect...child was started in physical therepy due to left side body not moving... saw eye dr as child would just stare into space...not blink or move eyes at all.. eye dr did old fashioned eye exam instead of using regular eye machine used this case of glass things with laser lights and stuff to test her eyes.... they said her eyes were such severe flatness instead of roundness to her eyes that she would never be able to learn to see without glasses to ":make : the eyes apear normal diagnosed with austigmatism and farsightedness I had noticed things from day one that my child was a bit different than other babies but the hosptial told me ":dont worry it will all be fine"
My childs left side of the body is weaker than her right..yes she can use it but it is way weaker
she has been in glasses since she was 3 months old but there are days her vision will COMPLETELY go away and she just stares into space moving her head reallly fast then cries becasue she is scared...then about 5 minutes later her vision comes back this happens alot.. we have someone from the amercian blind association working with us who said out child had cvi ( cognative visual imparetmnet) but the eye dr does not agree....all her drs, pysical therepysts and early on ect have writen notes about periods of "vison voiding" and left side weakness repeatedly
ALSO, she will not put her legs down on the floor when she lays down...she will hold them up about 3 inches off the floor comjpletely STIFF.....
in pt she has been diagnosed with muscles that one day are so floopy like an over cooked noodle to days when she presents very hard and ridgid....
NOBODY will give me any answers..they just tell me we need a neurologist as soon as we can....CAN SOMEONE PLEASE GIVE ME SOME ADVICE AS TO WHATS WRONG WITH MY CHILD??? !!!!!
it has to be more than a "muscle" issue or just not seeing.......

Everyone has requested we go to a pediatric neurologist which we have apt to see dr to get one scheduled but it could be months away before we can actually see neurologist

More Answers

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M.S.

answers from Kansas City on

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.

4 moms found this helpful
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S.H.

answers from Des Moines on

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 :)

4 moms found this helpful
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M.L.

answers from Cleveland on

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.

4 moms found this helpful
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D..

answers from Miami on

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.

3 moms found this helpful
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M.P.

answers from Portland on

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.

3 moms found this helpful
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S.B.

answers from Dallas on

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!

2 moms found this helpful
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