2 1/2 year old daughter STOPPED growing--clinodactyly finger

Ann - posted on 07/27/2012

Thanks! I am starting a food diary and the doctor is going to start the testing process next week. She frequently complains of a hurting tummy too. I googled the Russell syndrome thing she definitely has some of the symptoms bu not all. Thanks for responding!

Sharlene - posted on 07/26/2012

@Janessa. Are you talking to me or ann, lol

Janessa - posted on 07/26/2012

I have a friend with the exact same problem, he's 6 now and the shortest in his class and hasn't hardly grown at all. The doctor's think he might have Russel syndrome, he has the same problem with the fingers. To let you know, the mild cases are not bad at all, they may only need a growth hormone shot once a year or so, or something like that, is what she was saying. It sounds like your daughters case would be mild. The more severe cases I think are more obvious. It may not even be that, but if it is, it isn't much to worry about. The doctors can test for it.

Sharlene - posted on 07/26/2012

Hi ann, I will .and thank you again :-)

Ann - posted on 07/26/2012

Thanks so much! Please let me know what happens on your end as well with all the GI stuff especially! The great thing about these little ones is they really can and do improve! Hang in there!

Sharlene - posted on 07/25/2012

Hi ann, thank you so much for chatty with me sorry I was no help to your thread but it was a real pleasure chatty with you. My daughter has always since birth had breathing issues but no asthma and she was also 31 weeker she has being in ICU at children's 6 admissions and C-pak and vent she also has Hydrocephalus fluid on the brain, partly brain damaged mild CP, Ret's syndrome and showing signs of Autism and feeding issues. Please let's stay in touch and chat more in the future and let me know how you go with the chiropractor.

Ann - posted on 07/25/2012

Hi! Okay your daughter is 21 pounds so our kids are close. YES there is treatment for EoE and everything you are talking about so it's good news just a waiting game. I have been told that my daughter may have a problem with her growth plates so that is why she stopped growing a good chiropractor can help with that. We are seeing one next week for this I can let you know how it goes. Does she have asthma also? The growth thing is related to the sinuses (I think it's sphenoid sinuses sorry I have spent too much itme at hospitals so I talk the talk!). Check out www.magicfoundation.org they have tons of info on growth stuff! Thanks for writing! Also, have you checked out the autismsciencefoundation.org? Really good reference! I am sorry your kids have so many issues I definitely know how it is!

Sharlene - posted on 07/25/2012

Hey. The gastro test is the X-ray type. So thios new disease is it cureable and is there treatment for it. Lol I'm actually so over the moon I answered you thread .She is well below the lne on the growth chart like she's 2 yrs old and 5 months and weighs 9.6 kgs don't ask me what's that in pounds lol. but she is underweight for her age and height and also her head has stopped growing it's being 48 cm for the last 10 months now and that's why she seeing the Nuro team and with the Hyrocephalus

Ann - posted on 07/25/2012

Sorry, I'm talking too mjuch shop talk, EoE is Eosinophillic Esophogitis and my uneducated guess is that is what your daughter has. (It's a "new disease" if that makes you feel any better) and the symptoms can be choking, gagging, all sorts of things. It is caused by food or other allergies. What kid of gastro testing are they doing? I have experience in getting my son tested for literally every disorder, unfortunately. Are they doing an endoscopy (where they knock her out, and do a biopsy of the different parts of the digestive tract)? How is she on the old growth charts? Sorry so many questions, I hope I don't talk too much doctor speak.

Sharlene - posted on 07/25/2012

They have for now suggested the nose tube and she's booked in for the Gastro testing and we should know from that the out come hopefully. No they have not mentioned EOE ,I had to google that sorry lol.

Ann - posted on 07/25/2012

Wow you are kidding about the feeding tube that is awful!! My son has intermittent choking problems (he was born with an esophagus that closed at the bottom by 5 weeks andhe wasn't able to infest saliva). It is typical for kids to be born with this to have the paralyzed esophagus. I am confused why they won't use a gtube on your little girl, they can diagnose this through esophageal fluoroscopy (high radiation I hav also learned so make sure the test is QUICK). My son also had sensory issues but hedoesnt anymore, those feeding specialists are miracle workers! Does she also have EoE? What about food allergies?

Sharlene - posted on 07/25/2012

Hi ann, sorry I had school drop off. No she has it through the nose and every day it's a fight to do it. She has sensory problems and the only fluids she has is this special formula called pediasure she wont have anything through the mouth and I try daily with yoghurt abd custard but just wont get it in her mouth at all. Can I ask you how you got your son diagnoised with esophagus peristalsis. The specialist has not mentioned that to me yet. My daughter has 8 different specialist behided her for her GDD's and health issues including Nuro team .Oh god sorry I'm chatty away lol

Ann - posted on 07/25/2012

Wow, your daughter sounds like my son! Do you think she may have an esophageal stricture? Has she undergone fluoroscopy? Also, has anyone suggested (and my son was diagnosed with this last December) esophageal peristalsis? That can cause choking and is basically where the esophagus muscle is paralyzed in some portion of it so we have seen feeding therapists as well and take water with every sip. Sorry about the feeding tube, those are hard, hopefully its a g-tube and not through the nose.

Sharlene - posted on 07/25/2012

Hi ann, To be honest my son has never whinged about it, Its very noticeable but no pain. When you mention acid reflux. Is that while swallowing foods when it comes up. course my daughter has sensory issues around her mouth and chokes when swallowing she on a feeding tube and part of a feeding clinic. Have they suggested giving her puree solids. Have they also discussed a feeding clinic ,there miracle worker's .

Ann - posted on 07/25/2012

She doesn't eat much it is a struggle. She used to be at 80 percent for height and 20 percent for weight but stopped growing last year, now she is below 10 percent for height and close to zero for weight. She is not on a special diet but I have recently noted that she has been complaining of acid reflux (my son was born with esophageal atresia/stenosis and has had his esophagus resectioned plus 15 dilutions). I am very lucky that she is ok on the emotion dev side. Is your sons finger getting worse? Does he find it painful? I just joined this group yesterday.

Sharlene - posted on 07/25/2012

What's her daily food intake, and she is on milk or other special formula's. Also does she have sensory issues like texture or swallowing of foods or fluids. My eldest son's baby finger is like that and it has be since birth ,hes specialist has said its normal lol.and plus he has autism so he has had two specialist pedic and developmentmental specialist since birth.