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The VCFS and 22q11 Foundation supports families and persons affected by VCFS or Deletion 22q11.

Parents Forum

To reply or ask a question:
email president@vcfsfa.org.au
or leave a message at the bottom of the page.

N.B. All Q & A's are from parents and individuals interested in VCFS. The VCFS Foundation & 22q11 Foundation is in no way recommending any of the advice given! Always seek medical advice before using any of the information or treatments suggested.

Sleeping

• Q. Our 9 yr old VCFS girl has severe sleep difficulty.Firstly, she will never be asleep before 10pm on any night and can keep up well past midnight.She also suffers great anxiety at bedtime and will only go if I'm in with her.We are currently trying the foldout bed next to hers so that there is a bit of separation between us but she just doesn't go to sleep for so long.This has been going on for most of her life.We have tried doing a sleep study at Westmead but it was inconclusive,if we lock our bedroom door, which we tried,the walls of the house nearly cave in with the screaming which is terrible for our other child to endure.I was wondering if anyone has a fresh idea for us to consider.I'm plum out of ideas,and energy! and have tried all we know.Does anyone have a similar situation with their child? Is it connected with the VCFS or are dealing with an entirely different issue here? Thankyou for any suggestions anyone m

Speech

• my son who is 4 has central apnea,nocturnal epilepsy,speech delays,global dev delays just to name a few how am i going to teach him to read or write we do makaton sign language and speach therapy is there away we can teach him the basics as he has just started kindy, weve tried pecs to no avail. I'd love to hear from any one who may have a few clues thanx jo in w.a

Maths

• My child has difficulty with almost all maths (age 8yrs). Has anyone tried any methods or programs that have assisted in understanding the basics?

Constipation

• Our 3.5 year old suffers chronic constipation like most of the other children with VCFS and lies of the floor in pain most days. He also suffers back pain which our pediatrician says is unusual but is not a concern. We are still worried as there is no explanation and have demanded another referral to the gastroenterologist even though the pediatrician was reluctant. He takes paraffin oil twice a day (18ml) and still stores up bowel movements for weeks at a time, when it does happen it is horrendous. Eating is also becoming more of an issue and if we can avoid eating we will. We also show symptoms of mood swings which I believe are related to bowel problems. Toilet training seems to be out of the question as he has no control over the bowel or any idea when he is urinating. Also regarding mood swings (ADHD?) etc, what age should they start being assessed for psychiatric/psychological disorders?? Caroline

Coughing

• Hi my daughters name is Madeline and we have a problem that someone out there might be able to help with .She is 7yrs old and has vcfs . Every year around winter (even if she hasn’t got a cold) she coughs continually at night . We have asked our heart specialist, or pediatrician and also our ear throat and nose specialist to see they could suggest anything with no help (the pediatrician thinks she has seasonal asthma) .It would be good if anyone out there has the same problem and could give us some answers?

Facial Expression

• Does anyone notice that children with VCFS find it hard to smile? When our son (14 yrs) is posing for a photograph trying to get him to smile is almost impossible. I'm sure it’s got something with the low muscle tone?

Sleeping

 A. Our Daughter is turning 11 very soon, She doesnt sleep also. She can go 30 hours with out sleep( we have done many sleep tests on her). No one could give me an answer as to why this was happening.She had alot of seizures between the age of 2-7 and it is thought that this might be why. We changed  paediatricians and he was fantastic. He started her on different drugs including the compound form of melatonin, it didnt work for us and then they tried her on a wonderful amazing drug called 'catapress'. This has been fantastic and has also helped her terrible behaviour. She is on a high dose, but guarentees her to sleep within 40 min of giving it to her. I felt awful at first that we had to drug her to get to sleep, but like you we just couldnt function any longer without sleep. I cant help her if i dont get sleep so we feel much better now. At nights sometimes the medication doesnt work and we let her come into our room. But we never let her in our bed.We have a mattress down the side of our bed and she is allowed to come in anytime she likes but she must sleep there.  It took about a week to get her to agree and now thankfully we can all sleep. Hope this helps,

 A.  My daughter is currently 14 years old and we have been having this problem for a few years now. She suffers from anxiety and OCD. We did the mattress next to the bed and it gave us all a good nights sleep but it wasn't solving the problem, just sidelining it. Her paediatrician put her on LOVAN which helped greatly with the anxiety but it didn't help with her getting to sleep and sleeping alone in her bed. She currently sleeps with her younger brother, who quite frankly has had enough. Her psychiatrist had changed her meds and put her on MIRTAZAPINE. This has worked great with her getting to sleep, as it makes her very drowsy but is hasn't helped with her anxiety when it is supposed to.Currently she is on 15mg ( 1 tablet) and she is asleep within the hour but not by herself...with her brother. We are going to see him again to maybe up her dosage to controol the anxiety. I hope that this helps and will keep you informed of our progress.

Speech

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Maths

Anyone interested should visit the web site http://www.mathletics.com.au/ -
the MATHLETICS program has worked for us and is AFFORDALE ($2.00 a week on a
yearly subscription on line!) we’ve also purchased a years subscription of English
program called SPELLODROME which has also been useful.

Blake (12 years old with VCFS) struggles with maths and the “Mathletics” program
helped him. It is used in the computer class at school and is “fun learning” ,so we
purchased a subscription and have now used it in the home for the last 3 years.
He loves the challenge of “timed games”, playing on-line 2 player games with other
kids who are on line at the time. Because of the repetitive maths (time tables etc) he
gets good scores against others. Another bonus is, as the program operates all over the
world they learn about different countries, where they are, time zones etc.
In my opinion this is a good program for 6 – 12 year olds when they are learning the
basics of maths. As Maths gets more complex this is when they start to struggle so
Mathletics helps them with a good basic start.

Why it’s good……
1. They can do maths at home (appropriate to their school year), whilst absent from
school (ie recovering from operations)
2. They don’t require constant parental assistance because they just jump on the
computer themselves and learn as it’s made “Fun”
3. It’s affordable - other programs on the market are much more expensive.
4. The child can “work” with their peers at their own level and not been seen as
different because anyone can use it. (so it is good for siblings too).
Also another avenue which has been successful for us is a community college program
called “remedial Maths & English for primary school children”. This is a small class of 10
children who are struggling with Maths & English which runs for 2 hours a week and is
approx $160 per term.

Constipation

I just wanted to say that my Matthew – now 16 – was born without an anus; he has been constipated all his life (from a baby). Our surgeon who opened his anus put him on Senokot chocolate granules (a teaspoon a day, available from chemist) when he was about 2-3 (too long ago – can’t remember!) and this kept his motions soft & regular. We used to give him a teaspoon in the morning after breakfast & he would have movement in the afternoon, which really suited when he started school, as he needed to be monitored on the toilet, and sometimes helped. Many a day I had my head in the toilet pushing around his bottom to help the poo form to come out, which had nothing to do with there being no anus when born, but everything to do with low tone in the bowel & hard poo! This would happen if I forgot to give him the Senokot or he forgot to take it till later in the day.

Now he’s a big boy he has Senokot tablets (one a day), which he is responsible for remembering as he knows if he forgets he will get pain in the tummy. We did try to reduce the amount of Senokot earlier this year (every 2nd day) but just ended up making him all blocked up had too many days off school & had to resort to a laxative.

There were concerns form some Dr’s who were worried that he was on Senokot long term, but most agree that he just needs it & will continue until he can really manage his bowels himself, if ever.

Bowel motions are very close to my heart, its something we have battled with most of Matthew’s life & I hope some of what I said can help. I would though just see your Dr when putting him on the Senokot, and there are many natural plant laxatives out there, we just found that knowing he was getting the right dose every day, didn’t have to pay attention to fibre in the diet (he too had eating problems) so it worked well for us.

I hope this helps – phone me if you would like clarification on anything or to talk it
trough.
Helen Paul

This story has been edited. Please email president@vcfsfa.org.au for full version and
contact numbers of Helen

A2. We find Carly also has terrible trouble with excruciating number 2's.We seem to
have solved this by only giving her wholemeal pasta, wholemeal or seeded bread, she
eats plenty of fruit but have found the soluble style of Metamucil fantastic. I put it in
our cooking, in her milk or water and she won't even know it's there. It is working
really well for her. It would be tough getting this little one to eat I'm sure, maybe try
the metamucil in fun stuff like milkshakes or sprinkled into ice cream? Even just in
the drinking water to start with! Good luck Caroline
Louise

Coughing

My son Simon did have asthma and even though he was on preventative medications for his asthma, he would cough all night as well. When he was still a baby, we kept him in our room and we used a vapouriser during the night to keep the air moist. Although this helped, it had the unfortunate effect of causing mould on our bedroom walls ( not good for asthmatics!). So we moved him into his own room, and found the best way to alleviate his problem was to make sure the room was kept warm at night, so we bought one of those oil filled column space heaters and left it on all through those cold winter nights. We also placed an open container of water in the room to help keep the air moist. He eventually grew out of it and is now asthma free."

Chris

A2. My son Lachlan is three and like your daughter Madeline, has vcfs. Lachlan also
had a night cough, which we could not seem to treat with asthma medication. Our
paediatrician suggested that his cough could be caused by acid reflux aggravating his
airway. He prescribed Losec 10mg which can be dispersed in a small amount of
water for easy swallowing. After a few weeks of this medication we had no more
cough! I hope this can help you and Madeline.
Carolyn

A3. Thank you for that we have been using a tea light burner with eucalyptus oil init
to we go to bed the using one which goes into the power point. That seems to help a
bit
Troy

A4. Our Chris was 9/10 - and we went through two winters with this night time
persistent cough - we ended up down in hospital numerous times. We were up all
hours and the only thing that kept Chris quite was watching late night DVDs!!!!
He was diagnosed at a young age with asthma ie seasonal asthma - he was put on
relevant medications.

During one episode it was suggested by the paediatrician (he had been looking after
Chris since the age of 3) that it was a "Habit Cough". We initially didn't believe him
but it was proved to be the correct diagnosis. The Paediatrician had a talk with Chris
and told him what he thought - would you believe it - that was the end of that - it was
stopped in his tracks!!! Didn't have another episode since and he has since out grown
his asthma and he hasn't had to be on his medication for the last couple of winters!
Am more than willing to pass on our paediatrician's name and contact details if
needed, he is based at Westmead Sydney.
Hope that helps!
Priscilla.

Facial Expression

My son is 26 and it takes a LOT to make him smile, even at his sisters wedding one
photo of us as a family reminds my daughter of the 'Adams Family'! Verysad. At least we
have lots of photos when he was little where he did smile.

Mayra Yungaicela

Aug 12 2010 1:24 AM

I from Ecuador, I dont speak english very well, please Ineed help, and need help to you, my son alias "BELLECHITO" IS IN THE HEAVEN, 3MONTH AGO, HE WAS OPERATE THE HEARTH HE DOESNT ANSWER GOOD, I WISH BE VOLUNTEER FROM ECUADOR , IN MY COUNTRY THERE IS NOT INFORMATION OR FOUNDATIONS, I AM A DOCTOR, I DONT CARE THIS THINGS UNTIL THAT MY BABY SUFFER, HE LIFE 2 MONTHS, MY SON SPEND MUCH MONEY,MY HUSBAND AND ME CANT HELP TO YOU WITH MONEY, WE WISH ANOTHER BABY, AND SHOULDBE WE EXAMENS VERY EXPENSIVE, WE DO EXTRAHOURS AND TO DO THE EXAMN, WE DONT PIDIENDO MONEY, WE KNOW THAT YOU NEED MONEY, BUT WE WOULD LIKE KNOW MORE, KNOWDELEGS ETC, I HOPE SO THAT UNDERSTAND TO ME,

Belinda roberts	Apr 21 2010 11:06 PM
Hi my son is 2 and a half we just got to told he has vcf only two weeks ago Charlie dosent smile he has always been like this all his life we though he was beening stuben but it it due to very low muslie tone but he smiles with his eyes he is very cute

jo	Mar 02 2010 1:48 PM
hi my son who is 4 has central apnea,nocturnal epilepsy,speech delays,global dev delays just to name a few how am i going to teach him to read or write we do makaton sign language and speach therapy is there away we can teach him the basics as he has just started kindy, weve tried pecs to no avail. I'd love to hear from any one who may have a few clues thanx jo in w.a.

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