Hope i'm in the right place

My little girl is still not bearing weight on her legs and curls her toes in when her feet are on the floor, she is getting referred for physical therapy as of the 8th October but i am very worried that there is a serious disorder that is causing this, it's not just because she is abit behind. We have a drs appointment on Wednesday and i am going to tell them my concerns and i am praying that it is a waste of time but i am so worried that she has something wrong with her. She only ever rolls to get off her tummy and is very stiff in her upper body but has very floppy legs, she is making no attempts to crawl anymore, rolls to her side then gives up, she flaps her hand and he rarm movements are very clumsy and jerky. Overall i am so sure something isn't right, her symptoms have led me toward thinking she has CP or Kabuki syndrome or both. After looking into these things it turns out that these problems are more common in IUGR/preemies. I'm so very scared for her, if she does have any sort of mental retardation i am not sure how i would cope or if i can cope, i am absolutley devastated and not ready for this but i need confirmation of what we are dealing with.

 

Liz, I am going to move this to Health Issues. Are they sending her for a neurological consult, or any other type of consult?

I'm sorry you are so worried. :hug:

 

Liz , See what your doctor says about her tomorrow. Write down all your concerns and bring them with you to the appointment so you are sure not to leave any questions out. Ask for a referral to a specialist if necessary. That is great she is going to be starting therapy soon, that should help a lot. I have to add though even if she did have CP it does not mean she would necessarily "have any sort of mental retardation" One of my twins has mild CP and his IQ actually tested at superior range when they did his testing in school.

I hope all goes well tomorrow at her appointment and you get some answers. :hug:

 

:hug: Liz, I'm sorry you are so worried about your little one. I agree with writing down your questions & observations so you are sure to cover everything with your doctor. Good luck tomorrow, I hope you get some reassurance. Let us know how it goes. :hug:

 

Thanx Becky, wasn't sure where to post this? Well i took her in to my local dr and after looking at her legs, feet, posture and watching how she "can't sit supported" he has referred us to the hospital to see a ped, not sure what happens from then on in? Unfortunately we have to wait about a month for the appointment. :hug:

Thankyou for your advice i will do just that for our next appointment with a ped. I'm so sorry if my worries of Ruby being mentally retarded have offended you obviously not my intention at all, i'm really sorry it's all new to me and my comment was a big generalistaion :blush: :hug:

Thankyou, the dr just assessed her and then referred to her to a ped so it's not really put my mind at rest that she is ok but i am very pleased to be seeing a specialist in about 4wks. A long wait but at least we are getting somewhere now and the wait for PT is even less than that :hug:

I just really hope for the best, i expected her to have some sort of delay as she was iugr but i hadn't prepared for more serious issues. I don't think i have done my nerves any favours by googling her behaviours, it has brought up a whole host of things but i guess you can't diagnose someone like that can you. It's just really heartbreaking, Amber is crawling and into everything! I feel so bad for Ruby being left behind, i can see she wants to move but something is holding her back I just dont' know how to help?

 

It's ok! I moved it because I thought you would get the most answers here. :friends:

Stop Googling. I know it's hard, and I do it too, but you can 'diagnose' yourself and your kids with just about everything under the sun with just a few clicks! My advice is to just take things as they come. Get her the help that she needs(if she needs it), as it is suggested. The best thing right that you can do right now(which you are already doing) is to be her advocate! :hug:

 

I'm glad you got the referral to see a ped & have her assessed. Sorry about the 4 week wait, but at least you know you have put the wheels in motion. Between now & then, I would keep a journal & write down anything you observe that the doctor might need to know or any questions you might have, then you can just take it with you when you go. And I agree with Becky, stop Googling! I have had to ban myself from Googling any symptoms the kids might have because you really can find some awful diagnosis' out there for some really common problems! :hug:

 

I know exactly how you feel. I am having the same issues with my twins. My little guy is so behind and my bigger guy is crawling and into everything. I have thought that my little guy has CP for months now but they told me to hold on because as they grow and develope things can change. For us it has a bit. My little guy can now roll over(but only to the RT) and can now tolerate being on his tummy which he couldn't do a month ago. Anyway it is a long story but I have done tons of research only to come to the same conclusion that only time will tell for us. Hang in there, it is good that you are going to see a specialist. Feel free to PM me anytime to talk about it. We are going for our Big meeting with all the professionals tomorrow so I guess I might finally get some answers. The waiting and wondering is the hardest part. Best of luck

 

I agree, my twin sis and I were born 16 weeks premmie due to TTTS and I was diagonised with CP at 2 years old, and im okay mentally, i just have mild CP which mainly effects my left side. I have completed high school and now studying education at college, i love writing, music and lots of other stuff. I was very good at english at school. I achieved excellence awards at school, and I was an A and B student through school. So it doesnt necessarily mean anything mental could be wrong. I'm praying for you and I hope all goes well. dont worry im sure everything will work out, please let me know how u go. You are in my thoughts :hug: I just wanted to add after reading your recent reply that you shouldnt feel bad, i know my parents felt the same about me. I only started walking at 2 years old, and alisha was walking and into everyting.. I'm not offended by your "mental" comment at all, I know how hard it is. And I can tell you that sometimes i feel like i have been the hardest child for my parents to raise because they have had so many different worries with me. Do you know what i mean? I'm hear for you if you ever need to talk. :hug:

 

Liz you didnt offend me at all :hug: I just know soooooo many kids with CP who are cognitively OK, I wanted to give you hope for your little one. It is so hard when they are little and you don't know what their future may hold.

I hope all goes well at your appointment in a month. Will she be starting physical therapy in the mean time?

 

Firstly can i just apologise to all for starting this thread and then disapppearing, i have had my MIL to be and 5 yr old son stay over due to a relationship break down.. so my time on line has been limited.

 

Response to your qoute(sorry I don't know how to insert the qoutes)
"Oh gosh i'm so sorry you have been in limbo land aswell but i have to say your post has been a great comfort to me. I have felt like the only woman in the world dealing with these concerns and it's been lonely, thankyou for sharing! So how did the meeting go? I am praying you got good news? Please update as soon as convenient for you! I completely agree that all the wondering is so hard, i am driving myself and DF mad! I just want to fix things, how do you do that if noone can tell you what the problem is? How long has it taken you to get your meeting with the specialists? Your twins sound like the double of my girls. I am trying to come round to your way of thinking for the next month at least. Anyway thankyou for your support and please keep in touch."

Are appointment went okay. I was hoping for some concrete answers and got none which was disappointing at first. I guess it is a good thing though that they are not ready to label my boys with anything but the waiting is absolutly driving me NUTS!!. They seemed a little less concerned with my little guy as I thought they would be but he has had positive progress every week so that is a good thing. They did tell me that they would be hesitant to diagnose him with CP until the age of two so I guess I will have to find some way to accept that. I know in my heart that he is not "normal" and that is okay with me I just don't want to live on false hope either. I have decided to just accept that my sons will be different and leave it at that until someone tells me otherwise and if I am wrong great! They did however voice concern about my bigger guy and his lack of attention abilities. I have always described him as dazed and confused but everyone shrugged me off. Now they are saying that we need to watch it but wont tell me what we are watching him for? I am assuming it has some relation to autism but no one will say for now. They suggested we try using Allimentum formula and see if his fogginess clears up a bit because they are thinking he might have some problems digesting milk protien. We are going to give it a try but it is so expensive and I haven't been able to find anyone else with similar experiences to see how it worked for them.
I would love to hear how things progress for you and would talk about things anytime you need. I have found some comfort in knowing that I am doing everything that I know how to help my boys and give them the best start they can possible get. It can be so overwhelming though so hang in there. I think that once you get to see pt you will find some good techniques to foster the developmental process. I know we have seen huge gains in the boys abilities since we have seen PT and OT. For us they had a refferal straight out of NICU for the early child hood intervention program so we started with Pt and OT at 4 months of age and seeing their in house pediatrician is all part of the program.
Keep up the good work and take it from me who has drivin my self crazy trying to get a diagnosis that the wait is hard but things can really change a lot over time.

 

Hey thanx for getting back to me :hug: I'm sorry you didn't get any answers but they do say that no news is good news? I heard also that they don't like to diagnose it till at least two given that things change. I'm really glad that nothing has worsened with your lo - that shows his PT Is well worth doing! I cannot wait to get started. Do you know isn't it frustrating when your intuition is told to be quiet by a medical proffessional only to have them come round to your way of thinking when things get more obvious to them. Sorry to rant and also that you have more stuff to deal with :hug: To be honest i know nothing of Allimentum formula i'm afraid, i suppose it is worth a shot, did they say how long he would need to be on the milk to notice a difference? Would your health insurance cover any of the cost? How are you feeling about the latest developments with your bigger boy? You have alot on your plate right now and i'm envious of how you are handling it all. I told myself last night i would start a fresh and try to enojy my girls but i'm struggling to fight back tears everytime i play with Ruby. For me the hardest bit about all this - is the not knowing. We had so many plans and dreams for our lives with the girls and unfortunately it feels like it's ruined. So much for my new PMA (POSITIVE mental attitude) i lasted half a day!! I feel very much like you do - in that i don't want to live on false hope but i will be honest i am really struggling with how to handle this. I don't want to accept there is something wrong but i think that is my only option now? Your right, when we start PT I think i will feel like i am helping matters. I'm annoyed we have had to wait so long to get started but that is the past and future i can't change.
Of course i will keep you updated, I am scared to open up to friends and my DF thinks she is ok so it does me wonders chatting to gals like you who have been in my shoes. Thankyou for your support it means so much I might even make a blog - might help me sort my own head out about all of this. Anyway i will put my violin away for now and go bath the twinlets - take care and i will speak to you soon :friends:

 

I already posted in 1st year but thought i would update this thread aswell!

"Ruby has been having some issues with gross motor skills and has been referred for PT and to a ped to have her lack of development looked into. She only rolls one way, my dr says she can't sit unsupported, (i disagree but whatever)she doesn't bare weight on herlegs yet and hasn't been making any attempt to crawl - she does move but only backwards when on her front lol Well i have just been watching her up on her knee's and rocking - so i am guessing that my little superstar is trying to crawl! I have always described her arms and legs as "weak" not any more

Also Pearly White number TWO has popped through today - you ladies who said i should expect somemore soon were correct! You should of placed bets "

 

i would ask for a hip xray

 

I will do yes, thankyou!

What are you thinking the problem could be?

 

My son has low muscle tone and appears to be "weak" in his upper body. He also showed signs of what you are describing. I think he crawled at 9 months and walked at 16 months. Once he was standing on his own, he never bent his knees! It was so strange. He's in PT to strengthen his core muscles and he is doing great. He just can't climb and step up and down things as easily as his sister but he's doing good. It could be something like that. Has she had a PT evaluation? I knew there was something wrong with Justin and they confirmed low muscle tone. I hope you get answers soon!

 

Hey,

Thanx so much for sharing! I'm glad your little boy's moblity is improveing, sounds like the PT is working wonders!! I can't wait to get started with it - no i haven't had an evaluation yet. We are still wiating, we see her new ped tommorow so i am hoping he will shed some light as to where we go now that they have recognised her gross motor delays Do you know how they confirm low or high muscle tone? Is it something that can be corrected? We are 9.5 months and she is just learning to get up on her kness and rock and she can scoot backwards blessher. The knowing we have a problem and not knowing what it is or how to fix it is very difficult for me so yeah hopefully tommorow i will have an action plan. Thankyou again i will be sure to update this thread tommorow. I hope your son continues to blossom

 

Just updating this post after our ped apptmt today.

Well we saw the ped today and he thinks "given her adjusted age she is perfectly normal and has no cause for concern for her what so ever, babies do things when they want not when we want them to" I was quite taken aback by this comment, i felt i wasn't being taken seriously tbh. I brought up all of my concerns and everything i mentioned he told me was "normal" and "it's fine" "she will do it in time" I hope to god (for his sake) he is right and wish i had faith in his proffessional opinion but i don't i feel that in the short time he watched Ruby he really has no idea about my little girl. He said he would like to see her again at 18mths and for her to start PT in the meantime. I really wish i could be happy with this apptmt.. you would think i would be, DF is and is annoyed that i am still not staisfied. I feel like we have been fobbed off once again and the fact that we have to wait another 8.5mths is a joke, it seems like they have there guideliness in place and that is that, they wont do anything until she is significantly behind or has a very obvious problem, i don't know why i bother paying for national health! If they were with her every day they would know that there is one! I am thankful that PT is still going ahead as i know she will benefit from it but i am still very scared that her issues haven't come to light yet. Sorry i am so fed up :80:

 

Im sorry your appt didnt go well. I know how you feel. Doctors only do something until its really bad. I know the feeling and im Contemplating surgery at the momeny for my Cerebral Palsy, its not good.. and im worried! I just cant get my head around having to go through it all again.
I hope you find an answer soon, as you know your daughter better than any professional ever would. I cant tell you how many times the "professionals" told my parents what they thought I should be doing, should go, etc.. they have had to disagree and look else where at times. Maybe you can get a different opinion?

 

Sorry the appt was frustrating. The good thing is the PT evaluation will happen. Keep in mind the PT doesn't need a "diagnosis" in order to help. The PT will look at your child's strengths and weaknesses as go from there.
Good luck

 

I'm sorry you feel like the doctor dismissed your concerns. That has to be tough because your mommy instict is strongly telling you something and it sounds like the doctor is not listening to you. Since she is still so very young, I would concentrate on getting the PT started. The PT will give you exercises or other ways you can work with her outside of the therapy sessions. She might make a world of progress with some PT work!

Since any diagnosis would not come until closer to 2, try to focus on the therapy rather than the unknown. Really the only thing a diagnosis does is give you a reason for the delay. Right now you know the delay exists and PT will address it. If you had a diagnosis, you'd still be getting the same therapy. And even with a diagnosis, you don't really have any idea of how she will progress in the future or what the future will hold. There are a wide range of symptoms with CP; she could be mild or severe or she might not have it at all. It's hard to face the unknown, but just focus on your DD and loving her as she is. (This is coming from a momma whose 2 year old son was diagnoses with autism last month. I struggled with whether to go down the diagnosis route as I knew it wouldn't change the course of his therapy. However, I decided to pursue it as it would help me understand why he was having problems and it would give me realistic expectations for the future.)

 

Hey Tamara, Thanx for posting! I'm sorry your having a tough time of it right now :hug: I presume you are spending time weighing up the pro's and con's to going ahead... i hope you come to a conclusion your comfortable woth soon and good luck with whatever you deceide!! I have decided to just ride out the next few months and hope the she makes her opwn progress and gets on well in PT (when we eventaully start it) and if she hasn't made any progress by the new year i will be taking your advice and asking for a 2nd opinion.

Hey Nancy, thanx for this! You make a very good point which i need to keep in mind!! On the downside i am still waiting for the apptmt to come through, i have been told to chase it up if i still haven't heard from them by the end of November but i'm hopeful she will be seen soon!!

Hey Jessie! Thanx for your advice, you have put the here and now into perspective for me!! I really should be focusing on what we can do right now, it's just hard to get caught up in finding answers to your problems. It sounds like you have been through worry and alot uncertaintly also. I hope that the diagnosis will help you plan your future better, knowledge is power they say!! I bet it is a huge relief knowing where you stand. PT is our next hurdle and in the meantime i will take your advice and enjoy loving my little girls, thankyou! :hug:

 

Thats okay, Im always here to help or just to talk.. I know how hard it can be. Yes I am but I have decided that going to the specialist and having the operation is best. As much as i dont want to go through it again its the only option. I went to my general doctor and she said its better to do the operation in the long term. They took blood tests to make sure theres no underlying problems but thats all fine. So I now have an appointment with the specialist on the 18th of Novemeber to see what he has to say. But im 99.9% sure its gonna have to be an operation, even though Im dreading it in someways. But the pain is soo much now.
Yes, I hope all goes well for you and I hope she starts making progress, yes make sure you get a 2nd opinion. Let me know how you go. Sorry Ive kinda made all this post about me :unsure: but remember if you ever need to talk or anything dont be afraid to talk to me

 

:friends: bless you, you are lovely!! I probably sound melodramatic lol you just want the very best for your kids thats all. Don't apologise for your post, it makes a nice change from the problem being mine... fair is fair :lol:
Anyway i am very glad you have decided one way or the other, as hard as it might be at least now you can focus on how to hadnle the op and more improtantly the great results you will have after recovery!! So very sorry your in pain right now though, that must really suck! Are you on any form of pain meds? I wish you lots and lots of luck for your apptmt on the 18th, please let me know how you get along but i am sure we will chat in the meantime. I really appreciate your support honey, i hope i can return the favour some day! :hug: By the way i have fantabulous news about Ruby, we start PT on the 5th!!!!!!!!!!!! So i am too xcited :yahoo:
C

 

Yeah thats true Thats awesome news about Ruby YAY It does suck being in pain, I cant walk without it hurting.. in someways I wish the op would be done and over with. That part scares me too. But the recovery is the hardest, longest.. a few months at least. Learning to walk again, in plaster for 2 months etc. But on the upside TS is keeping me entertained.. good thing we have wireless net Ive probably one of the highest daily posters lately. Yes, im talking pain meds, and massages for now.
I hope to talk soon again.

 

Oh no that sounds really hard, i can't even begin to imagine what you are dealing with... but that is a great excuse to go for a massage and play on TS ALL DAY :clapping:
I hope the wait isn't too long for the op, try to keep in mind the end results!!! You can do this!!! :friends:

 

Yeah it is lol. im just way over it now.. I wish it would all be done and over. As much as it would suck i might even see if they can do it b4 christmas so i dont miss out on too much of my study next year.. but my plan is changing for that too, since yesterday. i posted about it in the twinstuff club forum. My college teacher reckons theres no point getting my diploma degree in teachers aide because i'm already at diploma level. shes said i should go onto Primary School Teaching Prep-Grade 3 (Its called Bachelor in Education) so thats exciting.. I never thought i was that good. So im looking at doing it either distance or online next year since ill be in recovery for at least 3-4 months.

 

Hey Tamara, sorry for the delay! How are things wth you latetly?
Thats absolutely fantastic news, well you obviously are if your college tutor feels you should skip the diploma and go straight onto a bachelors! Hope you are feeling very proud of yourself i bet your parents are too? That will be alot of hardwork but it will give you something other tha TS to get your teeth into! lol
If i were you i reckon i would pretty much want to get it over and done with too, i will keep my fingers crossed that they can get you in before the end of the yr!! You have alot coming up, it will be ice for you to know exactly when it will be, it's not fun waiting around in limboland is it. We have Ruby in for PT on Thursday so i am wishing the week away, hoping we will know abit more before the week is out. Take care and speak soon xxx

 

I'm glad she is getting the PT appointment! Let us know how she makes out. Also, if you want some leg strengthening tips, PM me. There are a few things you can do on your own.

 

Thanx Lori, i will do :hug:

 

Thats okay, Im going okay besides the pain!! Its just getting too annoying. My family and I got away for the weekend to see some of our family and our new little cousin so that was really good! I dont know how I put up with sitting in the car for 5 hours each way.. though we did stop. But there was no way I was missing the chance to see my family again and our grandma, she has surgery soon on her hip too. I have 2 weeks to go till i see the specialist, i cant believe im counting lol. I dont want to go through it all, it doesnt seem real but Im hoping to get it done as soon as possible. My parents are very proud of me and we are looking to options for next year, hopefully an online option. Very true, but I hope I can get through the 4 years.. wow. It will be great in the end though No its not nice waiting around, its kinda all just up in the air at the moment. Good luck with Ruby's appointment on Thursday. How she is going? Let me know how she goes xx

 

:hug: it must be so tough but you are putting a really brave face on!! Your wkend away sounds lovely, can't beat a squeeze from a newborn - that will definately take your mind of things for a while. Hope you have a fab time!! 5 hrs is one heck of a drive but i bet it was worth it? I can relate to counting down the hours to medical appoitnments lol in a weird way you do look forward to them even though they can bear bad news! I can imagine that your batchelors will be 4 yrs of intense and hard work but you ar eobviously up to it and i am sure you will do brilliantly and yes you will reap the rewards of all your effort!
Well we had Rubys Physio Evaluation yesterday and we got some really good advice from it, feel abit more clued up about things now!! We have some sitting, rolling and crawling position exersizes to practice in any available playtime.PT are coming out to see us to "asess" her progress. They are putting it down to "development delay" and they say that with therapy she will catch up in no time. They said that her hips are fine and muscle tone feels normal just a little weak because she isn't all that mobile yet and because of this lack of motility her little legs have adopted a "frog leg" postion from sleeping on her back and not wanting to stay on her tummy, so our aim is to correct that and strengthen her tummy and leg muscles. I am still worried about Kabuki syndrome as the frogs leg thing is just another symptom that she now has but we will give PT a good shot before we look into going down that route again as the pedi thinks she is "normal" The excersizes are very tough for her but she handled it all brilliantly until we attempted putting her knee's in the crawling position, she screamed bloody murder so i am not looking forwrad to making her do that one again but hopefully the more we practice the easier it will become for her. The PT feels that we should not be worrying about her not bearing weight on her legs yet as she is probably doing this because of her prem age and IUGR and thinks that it should come in the next month or two, she has suggested that we limit any walker time to 15mins aday as it will encourage her to scrunch her toes in like she does. So a very positive appointment but just as worried about the future as i will ever be. Whoever said Motherhood was easy hey?
Enjoy your wkend Tamara and thanx for sharing in this with me :hug:

 

I'm glad Ruby is starting to make some progress. I cant imagine how hard it must be for you. I can definately relate this with what my parents went through with me, so I definately feel for you. I hope all goes well, try not to worry too much.. but what can I say? I'm the worst worrier to and I dont have kids yet lol.. so I;d hate to think what i;d be like lol I hope Ruby improves and that its just a little delay for both her and you. I agree with the Premmie part, we were premmie too so at first we were way behind for our age. Both of us, and Alisha (my twin) doesnt have any disability. I can totally relate to the excerises they hurt like Hell!! I feel sorry for her, expecially since they push you alot. I;m supposed to do them every night, but its hard to remember when your so busy. I'm definately not looking forward to the intense therapy after the operation. Yes I'm trying to be brave, but I think my back is playing up a bit now too because I cant walk properly cause of the pain.. so thats more pain too lol. Yes I did have a lovely weekend, it was great and I made sure I took lots of videos of the family too.. its always good those memories That's okay, its nice too be able to talk :hug: stay strong, your doing an amazing job.