Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Saw Geneticist yesterday - getting closer to a dx (perhaps??)

15 replies

Merlot · 09/11/2005 09:34

As many of you know, ds2 is 26months and has Global Developmental Delay (by default really, because no other dx has been available yet).
He is very, very large for his age. He is 1 metre tall and is wearing tops for age 4-5 year olds. he has no speech and his developmental age is around 12-14 months

My dh's sister also has learning difficulties (she is 44 and lives independently) and we have suspected for some time that there may be some genetic link. Dh also has a known chromosome anomaly (which doesnt cause him any probs, but which can cause probs with offspring, which is why I had a CVS - no problems were discovered as a result of the CVS I might add)

Ds2 has been tested for Soto's Syndrome, Fragile X and Angelman Syndrome (deletions only) and appears to have none of these things....HOWEVER, we saw the geneticist yesterday and she is convinced that ds2's condition is genetic (because he has a range of `soft markers' and because of his excessive height). The lab is now going to look at Telomeres (??) She feels the answer may lie here. Apparently telomeres cannot be examined under the microscope - they have to apply chemical testing to them (Telomeres are the very ends of chromosomes) and it is possible that sometimes, telomeres swap between chromosomes during reproduction - and that there is a chance that my dh has this in a balanced form, but that his sister and our ds2 has it in an unbalanced form.

If you are still reading all that.....well done. This really is `rocket science' and telomere testing is apparently (correct me if I am wrong tamum and others) in its infancy.

Anyhow, ds2 is now being included in a study of children with overgrowth syndromes and they are now going to start genetic testing of my sister in law and other members of my dh's family.

Am feeling...that we might be getting somewhere at last. Not that it will help ds2 all that much (he does seem to be getting all the help he needs right now), but it will help provide a better picture for ds1 (NT) should he ever decide to have children in the future.

Anyone else out there whose telomere's are being examined??

Merlot x

OP posts:
piffle · 09/11/2005 09:40

Crikey Merlot you'll be a bloody rocket scientist by the time you're done with this.
I do not know specifically about telomeres.
The geneticists we say with dd (Noonan Syndrome) tested her for the NS gene ptpnII but she did not have that mutation however she is in a study with other none ptpnII carriers who def have NS, they are hoping to discover other random mutations in another gene - they did mention something about swapping of characteristics via the chromosomes but they were unsure which genome it could be within. I'm sure the word telomeres was mentioned but cannot be 100% sure.
It did my head in and still does.
On a different note my ds (NT) now 11 was 1m tall on his 2nd birthday so the growth pattern is possibly a flag because of the other issues you know about, I think there is a 6th sense with some genetic "syndromes" as there are several amrkers that only you notice, when you finally get the diagnois it's like a total relief.

maddiemosthorrid · 09/11/2005 09:41

No help on the telomere testing Merlot, but pleased that things are moving on re dx.

cirena · 09/11/2005 09:53

I think we had this with dd2 in relation to her test for Retts, but may well be wrong as am not entirely clear what 'telomere' means! Glad that progress is being made and hope you get some answers. (Will have to contact dd's geneticist again as we haven't seen him for about 2 years and are no nearer any diagnosis.)

piffle · 09/11/2005 09:59

Just had a google and found this interesting article...
Genetic Evaluation Opens New Avenues of Diagnosis

Genetic testing is opening up new avenues of diagnosis for children born with developmental delays and mental retardation, helping pediatricians identify conditions that previously could not be diagnosed clinically.

In Sunday's session on "Genetic Evaluation of the Child With Global Developmental Delays and Mental Retardation," John B. Moeschler, MD, FAAP, professor of pediatrics at Dartmouth Medical School and director of clinical genetics at the Children's Hospital at Dartmouth, Hanover, NH, reviewed a clinical genetics evaluation process he uses to diagnose patients who present with signs of developmental delay or mental retardation.

After discussing a case study of a child with Noonan syndrome, Dr Moeschler defined global developmental delay as a significant delay in two or more developmental domains: gross or fine motor, speech/language, cognitive, social/personal, and activities of daily living. The term is usually reserved for children under 5 years of age.

He defined mental retardation as a disability characterized by significant limitations in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability generally originates before age 18.

Benefits of Genetics
The benefits of a clinical genetics evaluation for these conditions include avoiding unnecessary testing and gaining information that will help pediatricians manage the complications of the disorder, Dr Moeschler said. Such an evaluation is also cost effective when compared with usual care by neurologists, a recent study found.

The diagnostic process he described starts with a clinical history, family history, dysmorphology examination, and neurologic exam. If these steps do not result in a clinical diagnosis of developmental delay or mental retardation, then the clinician should try genetic testing.

The genetic testing he discussed included standard karyotyping and fragile X molecular genetic testing. If the results of these tests are normal, then clinicians should try fluorescence in-situ hybridization (FISH) for submicroscopic subtelomere rearrangements.

Once a diagnosis is established with genetic tests, pediatricians can then either manage or refer the patient or apply genetic testing to family members, if necessary, to confirm the diagnosis. If the patient has dysmorphology, such as microcephaly or macrocephaly, then magnetic resonance imaging may be required.

However, the genetic tests currently available for developmental delays and mental retardation result in a diagnosis in an estimated 54 percent of patients. The rest may go undiagnosed until a better test comes along, Dr Moeschler said.

The Diagnostic Process
The family history should include three generations of medical histories, with special attention to mental retardation and developmental delays. About 15 percent of patients will have a family history of mental retardation.

Standard karyotyping examines more than 550 bands of chromosomes for abnormalities, he said. These cytogenic studies have a diagnosis rate of about 9.5 percent. Fragile X molecular genetics testing can increase that diagnostic rate. It is especially useful in patients with a family history of mental retardation and dysmorphic facial characteristics, such as a long, narrow face.

About half of all structural chromosomal rearrangements involve the telomeres (ends) of the chromosomes, and that's why subtelomeric testing is valuable. Many of these abnormalities are not detected by routine karyotyping, Dr Moeschler said.

FISH is a technology used to detect subtelomeric rearrangements. About 7.4 percent of all children with mental retardation and developmental delays have subtelomeric abnormalities, he added. However, many of the syndromes detected are unique or rare syndromes with little known about their management, and the test may produce some false-positive results.

Based on findings of metabolic risks or complications from a history and physical examination, metabolic studies may be used to detect rare causes of mental retardation and developmental delays. However, these studies have a diagnostic rate less than 1 percent and there is a lack of data and expert consensus on the proper management of these rare causes, he said.

A dysmorphic examination is by far the most useful diagnostic study in the evaluation of developmental delays and mental retardation, with a diagnostic rate ranging from 39 percent to 81 percent. Next in utility is a neurologic exam, with a diagnostic rate of about 42 percent. By comparison, FISH has a diagnostic rate of 4.4 percent, Dr Moeschler said.

coppertop · 09/11/2005 10:01

I've never heard of telomeres but it's good that you may finally be on the way to finding out the cause of your ds2's difficulties.

Merlot · 09/11/2005 10:25

thanks piffle for posting that article - it certainly makes interesting reading.

Tbh, it sounds like, by the time they are considering telomeres they are almost grasping at straws....well we shall see, I guess. It will certainly be interesting to see whether my SIL has any genetic anomalies.

I also think ds's height is a marker because dh is only 5'9 and I'm 5`5. Piffle...I share your frustration on all this, although I am more resigned these days that we might never get a proper dx. Just feel that I want one more for ds1's sake and his future...than anyone else really .

Thanks everyone else for your kind words. It does feel good to be at least moving in the right direction.

OP posts:
piffle · 09/11/2005 10:35

They make pretty amazing advances, there is a lot of charity money invested in genetic research
as well. Whatever the conditon I hope you get a diagnosis as soon as possible.

Davros · 09/11/2005 10:54

Blimey Merlot, my head hurts!! Hope you do get some answers though.

Merlot · 09/11/2005 14:38

Davros - At this rate, maybe I could be a locum genetecist!!

OP posts:
Lillypond · 09/11/2005 15:46

Merlot I'd never thought about the affects on older siblings who may want to have children later on. I'm undecided whether to have more children or not because I don't think I could cope with 2 with SN's, but this really makes you look at things from a different angle.

Really hope that this leads somewhere for you and you're family and that you finally get a DX. Good luck

Lillypond · 09/11/2005 15:46

you're = your

cirena · 09/11/2005 15:52

Thanks for that article piffle, it was v interesting. I didn't know the percentage without a diagnosis was 46% - really quite high, or that the FISH tests found so few diagnoses.

tamum · 09/11/2005 15:59

That's good Merlot My friend is involved with developing better and quicker ways of testing for subtelomeric deletions, and he is certain that these kind of mutations will give a huge proportion of cases a definitive diagnosis (he's a clinical geneticist/paed). I'm glad you're getting some answers at last. The testing is in its infancy, rather, so don't be too disheartened if you don't find many other people having it done. Think of yourself as a pioneer!

chonky · 09/11/2005 19:35

Hi Merlot - we had telomere testing for dd, however nothing showed up. I think in her case they did it as they really haven't a clue what has caused her CP and delays. The geneticist is currently reviewing her new MRI scan pics, so we may be getting warmer. She's now down on the waiting list for micro array/assay (sp?) tests which look for breaks in the middle of the chromosomes rather than at the ends.

I have everything crossed for you that you hear some dx news soon, chonky x

Merlot · 09/11/2005 20:16

Thanks again everyone for all your support.

Tamum - I have my davy crockett hat on!

Chonky - This whole business is really like looking for a needle in a haystack isnt it? Fingers crossed for you too.

OP posts:
New posts on this thread. Refresh page