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Post by Stephanie on Nov 20, 2003 2:14:34 GMT -5
I know that over the last two years since my son was born I have had so many questions regarding his health. This area is dedicated to questions and concerns related to the health and well-being of our children.
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Post by Tracy on Nov 21, 2003 17:31:28 GMT -5
ok here is a question I have. Do we or dont' we consider the chicken pox shot. I am not really for the idea of injecting my child for something that is normally not a life threatening illness. But with the chromosome deletion should i consider it?  ?? |
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Post by Stephanie on Nov 21, 2003 19:41:45 GMT -5
ok here is a question I have. Do we or dont' we consider the chicken pox shot. I am not really for the idea of injecting my child for something that is normally not a life threatening illness. But with the chromosome deletion should i consider it? ?? I think that the varicella vaccine is one of the vaccines that the doctor automatically gives. I don't know from a medical standpoint if you should or should not get it, but from a mommy standpoint, I say get it. I figure it is one less thing that you will have to worry about. If your baby is anything like mine, illness seems to be much worse in him than in a "healthy" child. My son got the RSV vaccine last year and he still got RSV, but it was not nearly as bad as it could have been, so the vaccine seems worth the pain and we are doing it again this year. Just an example. Hope this helps! |
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Post by Peggy on Nov 23, 2003 20:20:57 GMT -5
ok here is a question I have. Do we or dont' we consider the chicken pox shot. I am not really for the idea of injecting my child for something that is normally not a life threatening illness. But with the chromosome deletion should i consider it? ?? We Have Ryan age 13. He recieved the Varicella at age 6. He had not had the chicken pox virus by that age. For us the decision was easy... It may not completely prevent the virus but will make it a lighter case and easier to get through. Our kids have enough on their hands... |
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Post by caroldhart on Nov 25, 2003 17:43:08 GMT -5
Hey Tracy,
My name is Carol Hart and my daughter Anna who will be six in May has 2q37.3 deletion. My child had to have the chicken pox vaccine to enter the local school system. Doctors normally do give this vaccine automatically. so I would also reccommend it now as well.
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Post by Stephanie on Dec 8, 2003 3:40:24 GMT -5
I was wondering if anyone has had any issues with nosebleeds? Kane has them all of the time. Any thoughts about why?
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Tracy
New Member
Posts: 4
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Post by Tracy on Jan 13, 2004 23:20:21 GMT -5
Hey there Stephanie,
My daughter with the chromosome 2 deletion does not have trouble with the nose bleeds ( as of yet ) but my other two kids ( who as far as we know are fine ) do.
I had a Dr. once tell me to increase the intake of vit. C. This will help keep the mucous membranes more moist. Don't ask me how or what with all that. We increased the vit. C with the chewables and noticed a major difference.
Keep in mind that my kids at the time were like ages 6 and 8. The youngest was taking up to 1500 mg of vit c a day. Only while the dryest season was upon us ( usually this time of year ) but I noticed a great change. When the weather let up the extra mega doses of vit C. were reduced. That was the best advice I had ever gotten on the matter, and the only one that seemed to work.
It might be something worth checking in to.
Hope all is well.
Tracy
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Post by Stephanie on Jan 14, 2004 17:15:23 GMT -5
Thanks for the input. Our ENT said that during an active bleed they have to cauterize the blood vessels that keep bleeding. They said its something about the vessels bursting.? This sounds painful to me, we meet with the doc tomorrow to find out more before we do it though.
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Post by lpluther on Mar 8, 2005 9:59:42 GMT -5
Hi Stephanie,
Regarding nose bleeds, I had them really bad as a child. My sister used to beg my parents to take me to the ER. I would have to keep cold packs on my nose for hours, I would go through 3 or 4 towels (soaked with blood) before it slowed down. My nephew also has them very bad, and my sister said if it wasn't for me having them, she wouldn't have known how to deal with it. I seemed to outgrow them. I think the inside of my nose would just get very dry, and as a kid you just don't notice like you do as an adult. I got them mostly when we lived in AZ, which is where my nephew lives. I would maybe swab a dab of petroleum jelly or Eucrin lotion inside each nostril on a regular basis. Both of my girls have never had nose bleeds.
I just think it's a very dry nose and it eventually cracks (like lips can do) and it just needs more moisture, that's my opinion.
Lisa ;D
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Post by krissysmom on Mar 24, 2005 23:38:28 GMT -5
I have a 17 month old daughter with Partial Trisomy 2 with and Unbalanced Translocation to the 13th. She has fine and gross motor delays as well as speech delays. Kristen has been seeing a speech therapist for several months now. She still can't say any words yet, but does understand a lot of what we say to her. Her doctors and therapists aren't sure why she isn't saying anything yet since she responds so well to what we say. They expected her to be saying a few words by now. Has anyone else had the same problem.? Kristen is making wonderful progress in fine motor and gross motor.
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Post by Stephanie on Apr 8, 2005 4:40:17 GMT -5
I have a 17 month old daughter with Partial Trisomy 2 with and Unbalanced Translocation to the 13th. She has fine and gross motor delays as well as speech delays. Kristen has been seeing a speech therapist for several months now. She still can't say any words yet, but does understand a lot of what we say to her. Her doctors and therapists aren't sure why she isn't saying anything yet since she responds so well to what we say. They expected her to be saying a few words by now. Has anyone else had the same problem.? Kristen is making wonderful progress in fine motor and gross motor. Kane is nearing 3 1/2 years old and he does not talk at all. He says mamamama when he is mad but we are not always sure that he means Mommy when he says it. He has never tried to say anything else. I don't know what he understands either. You can't really tell him to do something or why something is being done, he doesn't seem to understand. It's like when he has some awful medical test done, I tell him about it and why it is being done but I don't know that he has any idea what I am saying. I know this probably isn't helpful and I would greatly appreciate anyone's input on the subject too but this is what I figure.....I don't know what Kane understands or what is going through his head, so I tell him everything that I would if I knew he understood what I was saying. Does that make sense? I act as if he understands because I would rather tell him and him not understand then just stay quiet and him wonder what is going on. I don't know if anyone knows why our kids are delayed in areas of communication but it was suggested to us that we learn to sign with Kane. Sign language is supposed to be an easy thing for children to learn. Kane has not picked it up yet, but we are still hopeful. You might check into that, especially since Kristen understands what you say to her. A good book is "Baby Signs." Hope this helps some  |
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Post by lpluther on Apr 8, 2005 11:16:55 GMT -5
Hi Krissysmom, my Sarah is 7 now and wasn't diagnosed with Chromosome 2 deletion (37.1) until just last year. At 3 1/2 she hardly said 10 words. She was acting out at daycare, and they suggested I put her in speech. I didn't see a great improvement the 1st year, but the 2nd year, it was like turning a switch on and she hasn't been quiet since (she has repetitive behavior but that has decreased over time). She only had 2 years of speech and was up to speed with her peers (in that area) otherwise she is in special ed. now, but is learning at a faster rate than anticipated. I would say to just hang in there with the speech and try the sign language too. You never know when that "lightbulb" in her head might go off.
My nephew didn't say one word until he was 3, and prior to that my sister took him to many specialists and they didn't seem concerned. The same with Sarah, no one seemed concerned about her lack of speech, and the words came slowly, but by 3 1/2 there was a concern and we got help.
With Sarah is it takes awhile for her to learn something, but once she gets it, it sticks - that is the good news.
It took a long time to potty train her (about 2 years), she's just very very slow, and it takes repetition. I often wanted to just give up. Her daycare provider offered to work with her, and in a week she 100% potty trained. There's always hope, just please don't give up. I have found that with help of professionals (therapists, teachers), Sarah has made huge strides. I have an older daughter (without the deletion) who was doing everything either early or right on time, so I knew it wasn't my lack of skills in teaching Sarah.
Since Sarah has been in special ed. she is reading and writing, ties her shoes and can count to 100, which I was unsure she could ever do - I really had my doubts, not for my lack of trying. I'm not sure she will ever be at the same level with her peers, but I won't give up hope, but I also have to be realistic.
Sarah may or may not be an exception in this case, but wasn't diagnosed until she was 6, so I expected her to do all the things other children could do.
She can do anything a child her age can do. It's her academic skills, the cognitive area she's struggling with.
So please hang in there, I know it's frustrating, but with time and your patience and the professionals doing their job, there's always hope!!!
Lisa
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Post by David on Nov 18, 2005 4:37:29 GMT -5
Hi from Australia
Our son is 5 now with a 2Q 37.1 deletion, which was diagnosed soon after birth. He was slower than our other children to walk and he is in speech therapy. The therapy is making a difference, and we are sending him to normal prep school next year.
I notice three things with the speech. First it improves markedly when he is excited - for instance if I catch a fish, he might clearly say "Fish Daddy", but when he was younger you only got a glimpse of that. If I tried to get him to repeat it he would not or could not (not clearly anyway). Second I don't know if I am dreaming, but I believe that his speech improves if he is given Dimetap or similar when he has a cold. I believe that this type of drug is related to drugs given for Attention Deficit Disorder - but I am no expert. Third, testing shows that his understanding/comprehension is as good or better than most kids his age.
Our son has suffered extremely bad croup - so bad that we have had to give him Mouth to Mouth resusitation twice - we now have a medical arsenal that's to be reckoned with.
Otherwise he is great fun, naughty, and quite clever in many ways. Time will tell, but I feel that with help he will be able to lead a rewarding life - even if its not as a rocket scientist - then again, maybe we'll all get a surprise!
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