No one is listening to me

Lia, twin a and breech.

She is almost 13 months. Mentally she's ok and very smart. Physically- I saw her stand up once on her own, but that's it and only for a second. She can NOT put weight on her legs. She still can NOT role from back to stomach. Her hands are stilled curled in. She curls her toes in. She has a panic attack if you lay her on her back on a hard surface. She freaks out if she touches anything that is not smooth.
The worst part, her scream. You know that scream your baby can get, when you let it go for to long and they are screaming from their gut and it almost sounds painful? That is still NOT AS BAD as Lia's scream. And that's the only scream she has, she starts at that point, and it goes for 4 or 5 hours almost daily. I really do think she is crying because something is physically wrong.

What is really pissing me off? NO ONE IS LISETINING!!!!!!!!!!!!!!!!! Iv begged the drs for help, ive had her evaluated for a delay (they told me she not behind, yeah I get that, ITS PHYSICAL PEOPLE). Im at the end of how much I can handle. To listen to your baby screaming like that for HOURS is to much. This started at about 2 months.... I have NO idea what to do any more. I have tried SOOOOOO many things NOTHING works.

We're in the middle of one of Jim's deployments, and I just don't know what to do anymore. For my sanity or for her.

 

Did she get an Xray for hip displysia? My Ped had Sebastian (ALWAYS breech) xrayed at 4 months. Apparently breech babies can have this.

I hope you find answers and support. :hug:

 

:hug: I am so sorry that you and your DD are going through this. Can you get a second opinion from another pedi? Is your pedi willing to make a referral to a specialist?

 

Yes, we had x-rays done, normal

Im so sure that there is something wrong, Im on to my third Dr next week.

 

Your *third* doctor?! :blink: Do the first two have any explanation of why she sounds like she's in pain and why she can't bear weight on her legs?

I agree with you, that does not sound right. I know you said you had her evaluated; by whom? I've heard there are state agencies that do EI evaluations, but I don't know if you've already gone that route.

I really hope the new doctor has some answers for you, or at least listens seriously to your concerns. I'm so sorry you're going through this; let us know how the next doctor's appointment goes. :hug:

 

[quote name='Nate and Jack's Mom' date='31 January 2010 - 02:05 PM' timestamp='1264975506' post='1569204']
Your *third* doctor?! :blink: Do the first two have any explanation of why she sounds like she's in pain and why she can't bear weight on her legs?

I agree with you, that does not sound right. I know you said you had her evaluated; by whom? I've heard there are state agencies that do EI evaluations, but I don't know if you've already gone that route.

I really hope the new doctor has some answers for you, or at least listens seriously to your concerns. I'm so sorry you're going through this; let us know how the next doctor's appointment goes. :hug:
[/quote]

THe first dr said 'something to watch for' , then our insurance changed.

the second one told me 'well, you just have to many, there is no way you can possibly provide for all of them, there's going to be problems'

So, going to a third...

We had one eval, they told us 'yes these things are a concern, but that's not what we do here'...

I think we just get rushed through to fast. You know, like there is so many people to get through, we get in we get out.

 

:woah: That is atrocious.

Sorry I don't have any advice for you. I hope this third dr can work out what the problem is and get your daughter some help quickly. I can't imagine how hard it must be to have to go through that every day. :hug:

 

Thank you. That turned out to be just ONE of the very hurtful things that dr said to us....

I understand where they where coming from about the eval. She had to test behind. and yes, not rolling over or standing up is behind, it's not enough for their services. she had to test behind 'overall' in many more then 1 category. like I said mentally she is really smart. she had no delay, she can problem solve. that's not what im worried about, it's the physical. something in her muscles i think.

 

Poor thing!! And I'm so sorry that no one is listening to you; I can't imagine the frustration.

What is she like when you change her diaper?? Do you hear any clicking in the hip area? My SIL had a singleton who was breech and had to wear a body sling to align her hips correctly due to being breech and how they sit in the womb. I'm not sure what she would've been like had it not been corrected though so no comparison there.

I would definitely, with this next dr, not leave the room until they take you seriously. YOU know your child best and it sounds like she is in pain. Please keep us posted!!! :grouphug: :hug:

 

I have not advice, only to say that I hope you can get some answers and help soon. that must be heart wrenching to hear her screaming so much! and what the doctor said to you was uncalled for and out of place!

I hope you find a caring doctor and solution soon!

 

OK, I'm a Physical Therapist, so here, for what it is worth, is my 2 cents!

There is DEFINITE physical delay. Decreased strength like this is NOT normal. I would recommend that you request an appointment with a geneticist. Every major Children's hospital has a genetics department. The first step is to rule out - or in - a genetic cause of problems. This could be a long road though, just warning you.

Second: a paediatric orthopaedist. Just to check that structurally everything is OK around the hips and pelvis. X-rays done once are fine, but I would want them repeated because your little one is still in obvious pain.

If all of the X-rays look fine & other bone density tests are OK, & you get the OK from the orthopaedist, then I would ask for a referral to a paediatric PT. I am not a paediatric specialist, but there are many interventions that can be started if medically/orthopaerdically your DD is stable. I would start these ASAP - even while you are waiting for all of the genetic testing/reviews etc. Because really, even is something is found on a genetic test you are still going to need these interventions anyway to help you DD get stronger.

Like I said, just my 2 cents. But feel free to PM me if you need some more info or advice on referrals, insurance etc.

You are the Mother, & honestly, Mother's instincts are nearly always right. I really hope your third Dr is more helpful, but I would go in there prepared & tell them what you want. No need to be rude, just firm!

Hugs to you :hug:

Ainsley

 

I very much agree with Ainsley. Though I"m not a PT or anything like that, you need to see someone that can approach this a different way. Going to the same kind of doctor may only bring you the same opinions. It's not their specialty. A mother's instinct is almost always correct. You know in your heart something is not right. The fact that you have had prior children only makes you very experienced at what is normal and what isn't. They should not be brushing you off like that because you are "so busy". What, they think you don't have time to recognize if your child is not acting the way you'd expect a child to act at this age? You already recognize that she's fully capable of problem solving. you never questioned her cognitive skills. You can plainly see if something is not right physically.

I agree, go see a geneticist and even a pediatric PT. look through the doctors and specialists that Ainsley suggested. You'll get a much better, more focused answer there than at the primary doctors. They are great for overall health. Some are more familiar with abnormalities, and know where to send children that need it, but not everyone does. Don't give up! You are doing a great job!

 

:hug: :hug: :hug: what a frustrating (to make an understatement) experience! i have no specific advice but just wanted to remind you that the squeaky wheel gets the grease! your instincts are valid & important - keep speaking up until you find the answer YOU are satisfied with. :hug:

 

Thank you! I think I might even print this out just for a little back up! In case I start to feel a little bulled, or ignored again! Thank you

 

Oh, thank you! Your words were actually very encouraging!

 

Definitely take an appointment with a pediatric orthopedist. It's what I ended up doing on my own for DD because my doctors were pretty useless. I don't know how easy it's going to be with the military medical system though.

 

My son did similar things at ten months. Although he didn't scream for long periods like your. My little guy didn't have the muscle coordination to do that stuff and putting him in the situation really stressed him out! We were already seeing PT and OT so we had been working on it all along. Then one weekend he decided to sit and crawl just like that. He still isn't walking and we are still going to PT and OT. Because of his high muscle tone and sensory issues we kept him out of positions that would stress him out more and continued on with therapy. The clenched fists and curled under toes sound just like my son and are definitely not normal all the time at this age. Perhaps seeing a pediatric Neurologist would be good as well we are still waiting for our appointment. Also I recommend videotaping what is happening at home so that if it doesn't happen at your appointment(which I find happens a lot) then you can show them and they can't dispute it. I hope you get some answers soon, hang in there and keep pushing!!

 

I just wanted to lend support since you've already received some wonderful advice from the other members. You are doing all the right things and it's ridiculous that doctors would rather make generalized judgments than to do their job and treat your child. If they can't identify the potential cause, they should be referring you to specialists to rule out more serious conditions. Were all of these doctor's men by chance? :rotflmbo: Sometimes they just don't have the same compassion as women, especially in the medical field.

It sounds like you are sticking to your guns which is the best thing you can do right now for your child. Hopefully this new doctor will truly listen to your concerns and get a diagnosis/treatment plan in place for your baby.

Best of luck and keep up the great job!

 

This reminds me of those medical mystery shows that I love to watch - but make me SO mad that doctors dont listen! :hug:

Where in Washington are you? We used Kindering for PT and think the world of them - PM me if you have questions you would rather take offline.

 

We are in the Puget sound area, central kitsap

Going to do a fast update while the kids are eating dinner!

Saw the new Dr today. So far I like her a LOT better! She agreed with my concern 100%. Because this was the first time seeing Lia, she is playing some catch-up. She wants to get a copy of the eval we just had to see if there is something she can learn about Lia in it. After that, if we can't get the right help we need in this county, she is going to start sending us to the next county over (a larger city with more resources).

We may not have gotten answers today, but we did get some help! She was actually very upset that this was going untreated! Hopefully the process has started and answers will be soon to follow.

Thank you all so much for your support here!!!!!!! Sometimes you are back-up I need, especially times like this when Im on my own.

 

I'm soooo glad that you like the new doctor, and that she's taking you seriously!! :woo: I really hope things move quickly and you can get some real answers.

Thanks for the update!!

 

Thanks so much for the update! I, too, like this Dr much better!!! :ibiggrin: Lia's symptoms should definitely not be going without treatment, & I think that a referral to the next county with more resources/bigger clinics & hospitals is a great idea. Wherever there is a higher population density there are more experienced Dr's, just becuse they see more stuff. I also think that the suggestion of a paediatric neurologist is a great one, too.

You go, girl!! Keep us posted!
:youcandoit:

 

:woo: That's great. Thank goodness you found a Dr this time who is willing to listen to and work with you. :good: I hope you get some answers, and help, really soon. Keep us updated with what you find out.

 

:yahoo: Thanks for the update! I am so glad that you are liking this doctor and she can get to the bottom of the problem! Keep us posted!