Anyone with info on...

[Just keep swimming]

an underdeveloped Pituitary? Jayme's 3 older sibs have all been diagnosis'd with this condition and we will be looking into testing for Jayme soon. From what I have brought up on a google search it looks like it is attached to the Hypothalmus (sp?) and is in charge of all hormones in the body. Most of the info I see is that it is involved with growth hormone, so that an underdeveloped pituitary could cause small in stature children. We have the complete opposite with Jayme and her sibs, they are all off the charts height-wise.

The developmental pediatrician that diagnosis'd her sibs said the reason none of the girls were potty trained until well into their 5th year was because of the underdeveloped pituitary gland. I have not found anything on my search regarding this.

We were just at the pediatrician yesterday, Jayme's echocardiogram was normal so she ordered a 24 hour Halter monitor, just to be on the safe side. She continues to have blue lips and fingernails on a daily basis. pediatrician wants to see the results of the Halter monitor and if that is normal she will be referring her back to Shriners to the Dev. pediatrician. She is 99.9% sure that this is related to her developmental delays and that she is "forgetting" to breath at times. Will be really interesting to see if the Halter shows any "non-breathing" during sleep. That is what pediatrician is concerned with at this time.

(A little background info for those who are new) Jayme is one of a 4 sib set that were all in foster care in separate homes. CPS placed Jayme with us and her 3 half sibs in another home. All adoptions are final now and we have a very close relationship with her sibs and their adoptive family. All the girls were neglected, abused and exposed to many substances prenatally.

pediatrician is very up to date with kidlets who have been prenatally exposed and what the possible issues that can occur.

Jayme is now only 3 yo, she is unofficially diagnosis'd with Hyperlexia, as she is starting to read already. She is extremely bright, but has a major speech delay and large motor skill issues.

pediatrician also wants Shriners to do a more thorough neuro exam with EEG, MRI, CAT scan, etc.

Anyways, didn't mean to go on so long. Just curious if anyone else knows more about the Pituitary.

Thanks!!
Vickie

 

[SRL]

Vickie, I don't know more about the pituatary but the mention of Hyperlexia with all of Jayme's other medical issues did make me think of something. I'm very familiar with Hyperlexia as my difficult child is Hyperlexic. Most of the children with Hyperlexia have it associated with Autistic Spectrum Disorders, Nonverbal Learning Disabilities, or being highly gifted. There is a rare disorder called Williams Syndrome in which a small percentage of the effected children also display Hyperlexia. Kids with WS have a number of the issues that you have mentioned along the way: kidney problems, circulatory system, Learning Disability (LD), motor skills, sleep problems, having an Autistic flavor but doesn't quite fit Autism criteria, etc.

http://www.williams-syndrome.org/

WS is a rare disorder that probably won't be on the radar of most doctors. I don't know much about it but it might be worth checking into.

 

[Just keep swimming]

SRL,

Thank you for those site links. I read through each quickly, will go over them more carefully tomorrow. Jayme has many of the symptoms of WS, but also not some as well. She is extremely bright, understands everything, but has issues with speech. She is learning 2-3 word sentences now at a more rapid pace since she has been involved in the Special Education preschool.

She is extremely introverted with those she does not know well. She is very shy with adults. She might still be too young for this part of the disease??? She is very good with fine motor skills but very delayed in large motor skills. She does have hypersensitivity to many sounds, covers her ears and says "too loud" alot.

She started out, when she was first placed with us at 4 mos. of age, being "failure to thrive", extreme feeding issues for about a month. But working with a nurse daily, she overcame that and has not had any issues with eating ever since.

She is not toilet trained, is very resistent to the whole idea, but we keep trying.

I will print out those articles and take them to the pediatrician on her next visit. Jayme did have genetic testing for Fragile X, Prader Willi's and Down Syndrome, all were normal.

pediatrician has not ruled out Jayme from being on the Autistic Spectrum. If she is, she is high functioning.

Anyways, thanks so much for responding and providing the links!

Hugs,
Vickie

 

[SRL]

I've done a little more digging and from what I can tell it sounds that in the descriptions of symptoms they are using a lot of terms like many, most, often, etc. indicating that not all children exhibit all symptoms so I'd consider the symptom list open to variation while doing your research.

I've not had any contact with any parents of Hyperlexic children with WS but I can tell you that parents of Hyperlexic/Autism Spectrum Disorders (ASD) children often find that in the areas of fine motor and IQ/giftedness/ability what they see in their child at very young ages can be very deceptive. Nearly all of them seem exceptionally bright when they are toddlers and preschoolers due to their precocious reading abilities and ability to memorize information. A look at that same population by middle elementary years will show a wide range from those who truly are gifted in one or more areas to those with learning disabilities and sometimes both. My difficult child's fine motor problems were similar in that he could write fluently from the time he was 3 1/2, both words and sentences with ease. If there was a fine motor task of high interest such as an alphabet puzzle he compensated well. Because those were so strong, both his preschool teachers and us at home didn't see beneath the surface to the struggles in other areas he was having. Again, this is with the population I'm used to rubbing shoulders with--I don't have any experience beyond this so it may or may not be applicable.

Found a listserve which might be your best bet in getting some feedback since it's unlikely that anyone here would have firsthand knowledge of WS:
http://www.williams-syndrome.org/

Please keep us posted.

 

[BusynMember]

Vicki, my son was adopted out of foster care with similiar pre-natal issues. Lucas taught himself to read at two. He is on the autism spectrum, although we couldn't get the diagnosis. until he was eleven. We suspected it so we demanded interventions and he got them. The neuropsychologist who diagnosed him said that substance abuse causes more Autism Spectrum Disorders (ASD) than in kids who were not exposed. Your daughter sounds like she may very well be on the high functioning end of the spectrum. My son had a speech delay too, typical. He wasn't #2 potty trained completely until age four. My son is fine with large motor, but fine motor is still a problem. He has trouble printing, let alone writing, even at age fourteen (almost).
We thought he was a genuis when he learned to read, but, as school progressed, he actually struggled. I'd try to get her in interventions regardless of her current diagnosis. It can do wonders. At her age, I'd see a neuropsychologist.