loosing developmental skills

iVillage Member
Registered: 05-28-2008
loosing developmental skills
5
Sat, 05-31-2008 - 2:09pm

hi everyone - i am new to this board.


i have a lot of concerns about my 14 month old.

iVillage Member
Registered: 07-22-2003
Sat, 05-31-2008 - 9:16pm

Hi, that's a really tough one. My daughter has episodes of regression and then regains her skills. Sometimes it takes weeks...sometimes months. I know it's frustrating and scary. I also know that some regressions are normal...like if your child is gaining lots of motor they may regress a little in language. But if it's an over all regression it's worrisome.


One of the things they look at is does illness cause the regressions? An event of some sort? I would recommend documenting everything. The skills lost, the food eaten, any sickness that occurred. If you can video tape the before and after that may help too. Hopefully the developmental ped will be able to address your concerns and recommend whatever testing may be appropriate.


I think it's great your child will be seen very soon by a dev. ped. That's our next move. My daughter is 4 and has been going through this for years though they've changed over the years. We've encountered quite a bit of frustration because her doctor's don't know what's causing it and tend to say since she regains the skills and her overall progress is ahead don't worry. Intitially it didn't affect her language but know it does. Right now I'm pushing for a 24 eeg. But so many things can cause regressions.


Sending you a big hug. I know it's scary. I am glad to here your child is regaining skills at this point though I know the time lost is heartbreaking at this age.


Please update after your appointment.


Summer


mom to Anika

iVillage Member
Registered: 05-28-2008
Sun, 06-01-2008 - 2:47pm

thanks so much for your thoughts...


what is a 24 eeg?

iVillage Member
Registered: 07-22-2003
Sun, 06-01-2008 - 5:22pm

Yes, the eeg is for checking our the brainwaves. It can catch seizure activity or just abnormal brainwaves. It's very complicated and I don't know much about it.


Yes, I would definitely write down all you can remember with as much specifics as you can recall. It can be very helpful.


Our daughter is a bit complicated and her presentation is unusual. Overall she's doing very well.


She had some fetal distress and was born with low apgars but the picked up. But she had trouble breathing and was in the NIC for two and 1/2 days. When we brought her home she we know she had a PDA in her heart but it was expected to close and otherwise we thought she was typical.


At three months though she still had very little head control. Then at 4 months we noticed her head was always tilted. Around 6 months having vomiting episodes where she would not gain any skills and be very tilted. She was lethargic and cranky. She was diagnosed with benign paroxysmal infant torticollis, a rare variant of infant migraine. I think she's outgrown this now. But her motor skills very delayed. She sat independently at 1 year but couldn't get into a sit until almost 1.5 years old. Walked independently at 2.5. Once she started standing we realized she was ataxic, (unsteady and poor coordination=lots of falls!) But she got a ataxic cp diagnosis. She continued having episodes of increased ataxia and her eating skills would decline. But she always recovered. She lost her first set of pronouns during an episode right when she turned three. This was the first time we saw her language being affected. But she did regain them 3 months later.


For the past year and half every two to three months she starts to get spacy, distracted, irritable and her language skills decline. She eats little solids (drinks Nutren Jr) and really struggles to find words. Her adaptive skills really decline, potty training, self-dressing (she's mostly working on undressing still). She stills gets more wobbly but she is usually able to still catch herself. She gets loose and slower though. But she can still talk and function...she just has multiple meltdowns daily and is incredibly distracted and short attention span.


Her language was initially normal, but she stopped getting new words from 13 to 16 months. She had a mild expressive speech delay. Now she tests age appropriate but speaks with odd phrasing and has a slight delay in responding. The can vary from 2 to 3 seconds to as much as 30 seconds. Right now I'm interested in ruling out a variant of a very very rare speech/seizure disorder called Landau Kleffner. I think it's very unlikely but possible. Her thinks it's not only unlikely but impossible so the struggle goes on.


There are also metabolic conditions that can cause regressions. We've tested for several though to be sure you really need to test during a regression. However since she is doing so well despite her episodic regressions they've ruled that out. We also looked into episodic ataxia but she tested negative for that...we still waiting on some research tests...but it wouldn't explain the language/behavior issues.


Basically what I'm trying to say it's very hard to know. There are many conditions that can cause similar symptoms. Googling can make you nuts. Finding an experience doctor who takes your concerns seriously and can figure out the nuances of the symptoms to guide you to the most appropriate testing is huge.


When I came across my latest the LKS variant. My husband jokingly called it "The disease of the month". And not without reason. But sometimes all you can do is eliminate conditions one by one. And if there is a possible treatment I'm all for it.


But I try to keep in reason weighing the invasive/possible finding/possible treatment to the level of her struggles. I mean she could get a muscle biopsy or a spinal tap but she doesn't have symptoms that point in that direction and it's tough putting your child through that. But since her symptoms seem neurological she's had 2 MRI's and one eeg as a baby. All normal by the way.

iVillage Member
Registered: 05-28-2008
Wed, 06-11-2008 - 9:05pm

fyi - i also put this message on the speech delay and disorders board.

iVillage Member
Registered: 07-22-2003
Fri, 06-13-2008 - 1:39am

I'm glad you like Dev. Ped and are going to get an MRI. Sounds like there are a lot of positives in the picture.


We just saw a Dev Ped today and she is taking our concerns seriously. Finally.


Thanks for the update.


Summer