My SIL needs your help

Hello all. My SIL needs your help.

 She sent me this email and asked me to ask you if any of you had any insight for her.

 Just as a way of background, they live in Tanzania and they have no access to any specialist doctors, OT’s, PT’s, early intervention or anything more than a family doctor.  She is coming to South Africa in March to have Amber assessed professionally.  

 I want you to post a blog on Amber,....I want you to ask the people (readers) if they have heard of a child like her.

Every body I have spoken to has not... I am getting scared that something big may be wrong with her.

She is almost 20 months (next week) she does not walk yet, but she gives a few steps, she does not talk at all, she use to say mamma and pappa, but now nothing..... na da.  She used to sleep through, but for the past 6 months or so she is awake up to 5/6 times a night. 

  It is as if she is going backwards in stead of forwards.

She is going to the Dr for the assessment, but it still feels ages away, but like I said only if you feel comfortable doing it.

 I asked her a few more questions and this is what she replied. (BTW, Amber is a friendly, happy child, very sweet disposition.)

she used to eat better than now, she sometimes eat well other days she eats really bad, she drinks a lot of fluid, likes yogurt, rice and chicken, she is picky but not as bad as Dylan was.  She crawls, most of the time, hands and knees, started off sailing on her stomach at about 6/7 months, crawling on all 4's at about 9/10 months. Sitting she did early (i guess) was around 5/6months.  Her body does not seem that strong, as a lot of people who see her tell me she has low muscle tone (they think), a lot think she needs muscle therapy, other say she needs a full body scan.  she is starting to walk "longer" distances the last week, but her hands and body style looks a bit of the balance, it looks like a baby who just started to give their first steps.  She sleeps really bad lately as well.

Don’t know what else to tell you

I pasted her email as is.  English is not her first language. If you are part of the grammar police, please look away.

 Can you offer any insight?
 

Comments

[blackbird]

I won't speculate -
it's good she is going to SA in March to see a doctor there.
I can't imagine that another few weeks will cause any significant damage...you'll have your answers soon.
Please give us an update when you have one, I'm sure we'll all be thinking on her.

[Penelope]

My friend's little boy was very similar, he saw a physio for a few months and is now greatly improved, it was low muscle tone. He also seems speech delayed, but they're not worried about it. He's 19 months now. I hope she gets answers in March!

[Carmen]

I'm not sure what to say except to tell you about my little boy. He was adopted at the age of 14 months and had zero muscle tone; he couldn't even crawl. He learned to take his first steps at the age of 17 months and then actually walked. He is also speech delayed at the age of 22 months and can only say "Papa" and "Mama". Sometimes you need to give them some more time to hit developmental milestones. Maybe this is the case with Amber? There is often a LOT of pressure on kids or their parents to hit those milestones at a certain time. The doctor will be able to shed some light.
Please let us know how things turn out.

[Liza]

http://doolittle.typepad.com/doolittle/2007/01/chain.html

That is a link to a post of mine about realizing two of my children suffer Pervasive Developmental Delays (PDDs are autism and four other disorders of the central nervous system that can in fact cause children to go backward with their motor, verbal, and social skills). In that post, I link to a free online "quiz" to see whether your child has a PDD. Tell your SIL to go there and take it for Amber--there are clear explanations of how to answer each question, and you don't get a bunch of ads in with it or anything. You have my e-mail; feel free to give it to her and I will see if I can answer any questions she might have--I'm seeing a lot of specialists in this area with my kids and perhaps I could even forward one or two of her most pressing questions on to them and ask their opinions. XOX

[Liza]

Of course before doctors here will make a diagnosis of a PDD they make you take the child to a neurologist to make sure that nothing more sinister is going on in their brain, and of course her doctor can tell her best and I could totally be wrong. It just sounds so very familiar, and there is no harm in her taking that quiz--it'll give her some good information for the doctor because it forces you to really think about your child's abilities and areas of weakness, developmentally speaking.

[Melissa Braun]

This sounds so similar to what my daughter has - albeit to a different degree. Some things to look at:
1. childhood apraxia of speech (along with global apraxia)
One great website to look at is www.cherab.org

2. hypotonia

3. sensory integration issues

For many children with apraxia (which is a motor planning speech disorder and not a delay), there are other issues such as picky eating, low muscle tone, other motor planning problems such as walking, fine motor skill deficits, feeding issues, etc.

A great yahoo group filled with parents of children with apraxia and several specialists as well is http://health.groups.yahoo.com/group/childrensapraxianet/

The best book to read is The Late Talker by Marilyn Agin, M.D.

I realize your SIL's child is dealing with more than speech issues, but that's what I know most about because that's what my daughter faces. My daughter also faces other dyspraxic / apraxic issues, but not to the extent as she does with speech.

Hope this rambling helps.

Also, I realize it may not be apraxia, but at least she should look at apraxia / dyspraxia to rule it out.

[MamaChristy]

The only other child who I have heard of similar to this at all this is not something I want to tell your sil about. Heartbreaking stuff and it probably isn't the same thing anyway.

Tell her to enjoy her baby girl and love her and try to put what could be wrong out of her mind. It may seem like a long time to wait to find out what is wrong, but it really it will seem like the blink of an eye once they know. Cherish the moments before things change...

[Julie]

I hope the next few weeks pass quickly, and your SIL can find a Dr to help her in SA. My heart goes out to her - I know how stressful it is to be an expat in a 3rd world loction with no decent medical facilities.

Hope some of the Mums can help with info in the meantime. (((HUGS)))

[isabel]

I'm sorry your SIL and your family has to deal with this.

My niece was diagnosed as autistic at 17 months (she was completely non-verbal and made no eye contact, among other things). Early intervention was key. My niece is now no longer showing signs of autism: she is still a little different.

I hope your SIL finds some answers. It sounds like she's starting early and I hope her can-do attitude pays off.

[Susan]

It could be a delay in hitting milestones, which many children go through without any future problems. It also may possibly be PPD/Autism. I am certainly not an expert, but I am close to a few children who sound quite a bit like Amber. They are very sweet children as well.

If it is PPD, just know that it CAN be reversed (a recent study showed that a minimum of 5% of cases have been shown to "lose" their PPD diagnosis), or at least alleviated with therapies.

There are excellent books on the subject, so even if there is a lack of facilities available in Tanzania, maybe with some self-education your SIL can learn to work with Amber on her own.

Also, I just wanted to add that many people with PPD or undiagnosed low-level autism go on to be self-sufficient, even brilliant adults. They have a different way of looking at the world, and that is not always such a bad thing.

Best of luck to Amber and your SIL. (((HUGS)))

[goodsandwich]

Quite a few of the things are just normal stuff, although I don't know anything at all about the total picture. My own son is 26 months old and STILL is a challenge with his eating! And I certainly remember a sleep regression around that age, in his case due to being hungry when he went to bed, although not necessarily quite that often per night. And I was a super-late walker myself, not one step until 19 months and not much after that for several more -- and look at me, typin' away at the internet!

Well, I'm no professional but just wanted to offer some potential encouragement. And your little girl is simply gorgeous!

[Menita]

What a beautiful little girl. I hope your SIL finds the answers (and solutions) she needs.

[perceval]

I was a very late walker (21 months) and was later diagnosed as dyspraxic. I think early intervention is key. Your sister should not let herself be fobbed off with "oh, they're just late developers" unless Amber has been tested thoroughly by somebody who knows what they are doing.

[susannah]

she is lovely and looks a lot like adam. sorry i have no advice. good luck.

[MollieBee]

She really does look a lot like Adam...how sweet she is. Best of luck to Amber!

[Liza]

Yes, dyspraxia is certainly a possibility. One of my kids has dyspraxia with hypotonia, secondary to an autism-spectral disorder. I myself have a milder form of dyspraxia, secondary to same. Yes, that's right, I am an adult with a PDD. And I am a self-sufficient member of society with an advanced degree who never had any early intervention as a child. So if they cannot find it, tell them do not despair; there is a lot that they can do with Amber at home if they can at least get a diagnosis, and again, I am more than happy if this is what it is to pass along information from my childrens' medical and OT caregivers. We are still in the middle of the diagnostic process, which takes a long time here so I can only imagine how it must be without such ready access to specialists. I went digging in my blog and found the direct link to that online PDD assessment tool (free and easy, with good instructions--you may have to help your SIL but I think she should be able to do it if she can write English as well as she did in the pasted bit--for a non-native speaker she does very well, I think. Here is the link; I don't know how to embed it in a comment the way some people do. Sorry! http://www.childbrain.com/pddassess.html

[Hannah]

I'm not really qulaified to diagnose, but the first thing that came to mind was PDD (as some others said). I saw a special about it last week, and some of the other children had similar symptoms. I definitely think it's a good idea to get her checked out. Early intervention can make huge difference.

[SimoneG]

My daughter didn't crawl until 13.5 months and didn't walk until she was 18.5 months. At 20 months she was still shaky on her feet. She also took a lot longer than her same-age toddler friends to start talking. I don't remember her saying much at all, if anything, when she was 18 months old. All of her doctors agreed that she had hypotonia (low muscle tone) and she was, and still is, a very poor eater. She's now on the 10th percentile for weight, but for the longest time she was well below the 3rd percentile. As for sleeping, I had to take her to a 'sleep school' when she was 17 months old because of the constant night waking.
She had every test under the sun (well, it sure felt like it at the time) - chromosome testing, enzyme testing, an M.R.I of the brain, an endoscopy to look at her stomach, visits to speech therapists, physiotherapists etc. In the end, the only result that was slightly off was the M.R.I. It showed slightly under-developed myelin. The neurologist said that as the myelin developed, so too would her physical development and speech. He likened myelin development to apples ripening on trees. Some kids just take a bit longer to mature/ripen than others.
Now my little one is 28 months old. She is walking, running, climbing and at a recent visit to the paediatrician, I was told that her speech is actually advanced for her age. Physically she is a lot more cautious than her peers, and she's not very fast on her feet, but that's really the worst of it.
I'm not trying to say that your SIL has nothing to worry about, and I do think she should have these issues further investigated (if she can), but there really are some kids who just take time to get going. I made myself sick with worry, and got depressed. Very depressed. I didn't talk to my daughter as much as I should have because I was so anxious about what might be wrong with her. I still get teary-eyed thinking about that time of her life. So my only other bit of ass-vice would be for your SIL to talk to Amber...a lot. I used to think I was wasting my time talking to my daughter because she never talked back. I didn't think she was ever going to talk. But when she did finally start talking, she remembered words and lines from songs that she'd heard months beforehand. I also had her watching 'Baby Bumblebee' DVD's, and I'm sure that helped immeasurably.
Does Amber try to communicate in other ways, e.g pointing?
Sorry for the long post, it's just that I can relate to how your SIL must be feeling. I hope she keeps an open mind. Amber might just be a flower that's taking a bit longer to bloom.
Please keep us posted, Tertia.

[SimoneG]

Just wanted to add that Amber is such a pretty little girl. Keep showering her with lots of love and affection.

[Heather G]

Is she perhaps learning more than one language? If so, that can be a reason for talking later.
My husband was a late walker (20 months). Not sure that that helps.
Does she point? Seem to understand but just not talk?
The eating and sleeping thing sounds pretty normal for that age (unfortunately).
She looks lovely.

[Claire]

I really don't want to speculate and or scare the crap out of you but I feel I must mention this. Since the lack of speech is a regression rather than a delay please mention Rett Syndrome to the doctor. In brief, it mostly affects girls and is characterised by a period of normal development followed by regression. It affects each girl differently, the spectrum is wide. It is apparently caused by a problem with amino acid processing. There is of course information on the net.

[CathyY]

I'm not qualified to provide input... but boy, she sure is a beauty! I can tell she's related to Adam and Kate! I'm glad to hear she's happy and loving, that says a lot. I'm also pleased to hear she'll be evaluated in SA. The parents deserve professional feedback to put their minds at ease and receive some helpful suggestions, if warranted.

[millie]

I know March must seem like it's forever away right now. I'd definitely include Rett Syndrome, dyspraxia and the autism spectrum in any differential diagnosis/assessment.

What is her joint attention like? Does she triangulate attention around an object and a person? Looking back to the person to 'check in' and focus on the object and person at the same time?

She does look so much like Kate and Adam. Totally adorable.

[Jillian]

Ummmmm.... sounds very familiar with what I'm dealing with right now. I was trying not to be worried, but damn, Google is a bitch. Good thing I have a Ped appt soon. Good luck with whatever it is, and I hope that it's absolutely nothing. All else fails, stay far far away from Google!!!

[Flicka]

No assvice, just lots of prayers and good wishes. If there's anything we can do, please let us know. Maybe a bloggy fundraising drive if she needs?