Daughter with DiGeorge Syndrome

I had not heard of DiGeorge Syndrome before so I had to look it up. I found a neat sight/blog that you might like to browse. It is : rollersinvegas.blogspot.com (Isaacs blog). It has links to other blogs, they are children and familys sharing thier life with DGS.

Hi B., I have a little girl 5years old with a chromosome deletion (not DiGeorge), but I subscribe to a website called Chromosome Deletion Outreach and there are many folks on it from all over the world that network with each other (that also have children with various syndromes). You might find more info there.... www.chromodisorder.org/

sincerely,
D.

Have you ever thought about getting your daughter adjusted? Just a thought. Chiropractic was founded because the first adjustment ever given was given to a deaf man and it resored his hearing.

Hi B.,

I am a speech-language pathologist, and I have a free social program called Play Pals. We have various events throughout the year, and they make for great opportunities to meet other parents. Feel free to call me if you should have any questions ###-###-####) - or visit the web site www.startherapyprograms.com, and click on the Play Pals icon. It will give you directions for enrolling, and then you will be notified about future Play Pals events, and future free parent education classes.

I hope we will have the opportunity to meet at an event!

Best Regards,
S.

Hi B.,

I am a Speech Pathologist in private practice in Midland, Tx. I had to look up some info on DiGeorge because I have never had a client with this even though I've been practicing for 25 years! Some of the info I read said that some children have a cleft palate? Does your dtr? I don't know where you live, but I would recommend that you call around and go to a Speech Pathologist for an indepth evaluation so that you can find out what her difficulties are AND what you can do to improve her speech. Living in rural areas is tough! You might see if there is a speech therapist at your town's school. She may not know what to do since this condition appears somewhat rare, but maybe she could refer you to someone in a larger community with the right kind of expertise! I hope this helps. If you write back and let me know where you live, I may have some recommendations myself. Best of luck, L. IRvin, MS/CCC/SLP

Hi B.,

My son is 4 and has DiGeorge syndrome. He has a speech delay which is quite common for this syndrome. He receives speech therapy as well as occupational therapy, as he has about a year delay in certain areas, such as dressing and potty training.

One thing you should definitely be pursuing, since your child has a right to the free services, is have her screened by your local school district. It's free and they have therapists evaluate your child, and will do a full blown evaluation of your child to see what therapies she qualifies for through the school district's preschool program. She would attend a local elementary school in the mornings and receive speech therapy and whatever else she qualifies for, to help prepare her for kindergarten. My son just qualified for the program here.

Does your daughter have immune issues? My son is immuno compromised, due to low amount of T cells. He had many recurrent ear infections for a while, but that has passed. Is that why your daughter has hearing problems?

There is a very good resource for reading but I'll have to get back to you with the name of it. I can't remember it off the top of my head.

Where do you live? Are you near Spring, TX? I know of 3 other families with DiGeorge syndrome in the area. We meet every once in a while. Let me know if you would like to join us, if you should live nearby.

If you have any questions, don't hesitate to write me. I understand completely your need to find others with the same situation. It's not been an easy road to go down, but neverthe less, my son is such a joy to be with.

I hope this helps, and hope to hear back from you.

L.

I have a daughter with special needs she is a year old. She was checked for digeorge and was negative and we are still trying to figure out what her diagnosis is. She is also deaf in one ear and she has a cleft palate in her soft palate so it's in the back of her mouth so she has speech and feeding issues, which she has a feeding tube. She gets speech therapy twice a week and they tell us to mimic any noises she makes to encourage her to be more vocal. We also show her things and say what they are and whenever we say her name we make a noise first that she
likes to get her attention first like a windchime. I don't know if that helps you I don't know how much she speaks or if their is developmental delay..

Where do you live? Is she receiving therapy? I am a pediatric occupational therapist and have worked with a few children with DiGeorge's. Each child I have seen has been significantly different from the other. The latest child is very high functioning with mostly speech delays like your daughter, but does receive OT as well for self help skills and fine motor refinement. I don't know if I can be of any help since I am not talking from the mom perspective in this case, but please let me know if I can!

There are two groups I could recommend that you contact. The Lewisville Special Education PTSA and the Denton ASK group have large e-mail list serves.
Maybe someone on there could help you.

Contact me at ____@____.com and I will share more info you.

Are you aware of the public school programs for children with disabilities in the public schools? Every public elementary school should offer programs for children with all kinds of disorders and delays. You need to get your daughter evaluated by professionals in the special ed. department of the school district you are living in. There will be a team of people, including a Speech Therapist who will do an evaluation and give you options for programs that are available. There are also private places that do speech therapy. Sometimes, insurance, or medicare will cover. You can do things at home on your own, but this problem sounds like you need some extra ,outside help. I have been teaching PPCD(Pre-school program for children with disabilities) for the last ten years. That is how I am aware of all that is available. It is free and your legal right to get the help for your child from the public schools now. J. K.

Hello B.- I am sorry to hear that your daughter suffers from this syndrome. I had never heard of it until now and was curious about it. I did some searching and found a website that might help answer some of your questions. It is http://www.madisonfaith.com/digeorge.html. I'm sorry that I can't help you from personal experience, but I hope this helps. This site also has some other links associated with your inquiries. Thanks.

S.

HI
I don't know about DiGeorge syndrome.
But I am deaf in one ear. The things that help me are...

Look at the face when talking- I have to see your mouth and lips. This helps the kid see lip and tongue actions when making different sounds.

Telling the kids when they were learning to say new words how to place their tongue. For this you have to observe how you are making sounds. So for ton or tie you would notice you are placing your tongue at the roof of your mouth. So you tell them to do that too and practice making all kinds of words and sounds with that sound/action.

Keeping other sounds off when trying to communicate. It is overwhelming to be trying to figure out what someone is saying when there are other sounds around. I don't play the radio when I am trying to talk to someone.

Good luck,

My daughter has Fanconi anemia, which is not the same thing, though I have met one other person with a child with DiGeorge Syndrome...though it's been a while now and I can't remember where I met them!

My daughter is hearing impaired and speech impaired. I wanted to offer a suggest to see if perhaps this is part of the problem at all. Is it possible that your little one has a cleft of the palate at all? My daughter had cleft of the soft palate - so it was only in her mouth and it was just a little groove in her soft palate that made her mouth not work correctly. They didnt' notice it until she was about a year old. Also, would your daughter do sign language? We do that with our little one so that she can communicate. Having a child with a rare disorder is hard...I wish you the best and hope someone else on here will be in the same shoes as you and offer you some support.

Take care!

My daughter has Turner Syndrome, and other difficulties and ECI comes out to our house for therapy (speech, occupational,nutrition) and it is free or covered by insurance. I got my daughter disability, you should check into that. There are ALOT of programs avaliable. There are long waiting lists (years) It is worth signing her up for everything because you will never know what she will need later in life. The number for our area Early Childhood Intervention is ###-###-####. I'm sure they can refer you to the one close to you. The help they have given us is priceless! My daughter doesn't really talk yet either, she is 17 mos. I know it is frustrating. She was tested for DiGeorge and I had researched it, I know there is an online community for it(sorry I don't remember the name- try googling it) Good Luck!!!

hi im just now reading this & hoping youll respond back,i have a 9 year old son who was diagnosed with digeorge at birth,we had never heard of it also & im still doing research on it
if you would like to contact me my email is ____@____.com
my name is S. we live in lewisville,texas
thank you

I feel for you. I have a son with CHARGE Syndrome and they did testing to make sure he didn't have DeGeorge, so I am familiar with the name. He didn't have it though. When my son was diagnosed with CHARGE at 4 years old, I started asking everyone and researching all the time. I first heard about DiGeorge from my son's immunologist.

Not many doctors knew about CHARGE and I would think that DiGeorge may be similar trouble in finding information. But, keep trying. Once you do find those other parents, it is wonderful!! You suddenly find kindred spirits who really do understand what you are going through and you gain the knowledge necessary to help your daughter reach her potential. You get to see others and how they have grown. It's well worth the time to find out as much as you can.

Good luck.
J.
____@____.com

www.livetotalwellness.com/janislanz

I don't know anything about DiGeorge Syndrome, but I am a speech pathologist. You can go to your elementary school and ask for a speech evaluation to be done on your child. You have the law on your side that this service can be done and it must be done in a timely manner. Make an appointment with the speech pathologist and you will fill out paperwork and let her know about the deafness in the one ear as well. Then the speech pathologist will evaluate you child and sounds like she will need services. Then a meeting called an ARD (Admission, Review and Dismissal) will be scheduled and she will go over the testing that was done and what services can be provided for your child. You will have to transport to and from the school until your child goes to that school. I wish you luck.

I do not have a child with that disorder. I do have a son who has pround autism. He is 11 yrs old and uses a communication device. The school paid for the device. THe device is known to promote language. The child not only can use the device to communicate their needs but also fascilatates language and is a good model. Let me know if their is any advice I can help you with in this area.

Hi B., I agree with Necole in getting your daughter into speech therapy. Last year we were told our four year old son possibly has Asperger's Syndrome. The neurologist referred us for Speech, Occupational and Physical therapies. He goes to Our Children's House at Baylor. They have several facilities throughout the metroplex and are just wonderful. We have met so many people there whose children have many different problems and are getting wonderful care there. If you would like any other information on them, feel free to email me.

Hi B.,
I am an Occupational Therapist. I have 2 children that I treat who were originally diagnosied with DiGeorge by upon further testing they were told they had Deletion 22 Q 11. Both children take ST, OT and one takes PT. If your daughter is not getting therapy I would suggest asking your doctor for a referral.

my daughter is 6 in first grade with digeorge syndrome going through the same problems as yourself. I have a facebook page A. nieves. I would love to talk to another parent with the same problems am having. Its very hard for me as a parent to not be able to understand her.also email me at ____@____.com to hear from you soon!

Hi. I'm sorry to hear about your daughter's problems. I suggest you google NORD. It is the National Organization for Rare Disorders. They have lots of information on disorders that aren't in the public eye. My daughter has Cyclic vomiting syndrome and we were able to find a specialist to see her after reading articles on the NORD website and contacting him directly.
My daughter is also deaf in one ear and we have to remember what seems extraordinarily loud to us is just what she can hear. She has a few issues with "ith" and "if" sounding the same to her. Ie: death and deaf, but she is doing well. We read out loud to her every day and it has helped. (Of course, we sit on her "good" side to do it!) Good luck to you, B.!