Special Needs list for our survey
We talked about this yesterday, we’re trying to put together a list of special needs that is all encompassing, and we want to combine the various disorders and issues together that often aren’t differentiated between on referral medical information. Also, for some issues, like heart defects or limb differences, it may make more sense to combine the dozen or so specific descriptions into one larger category.
Here is where we are with things now:
- Albinism
- Age
- Ambiguous Genitalia
- Amblyopia
- Amniotic Banding/ Missing Limb
- Anal Atresia, Imperforate Anus
- Anorectal malformations
- Apraxia/ Mute
- Arachnoid Cyst
- Arthrogryposis
- Atresia
- Autism
- Blindness
- Brachial Plexus Injury
- Burns
- Cafe au lait spot, Nevus, and/or Mongolian spot that makes the CCAA declare the child to have special needs
- Cataracts
- Cerebral Palsy, hemiplegia, hemiparesis
- Cleft Lip/ Palate
- Club Feet
- Concealed or Inconspicuous Penis
- Congenital Syphilis
- Congenital Torticollis (Twisted Neck)
- Deafness/ Hearing Loss
- Developmental Delay
- Diabetes
- DiGeorge syndrome, 22q11 deletion syndrome
- Down Syndrome
- Dwarfism
- Ectodermal Dysplasia
- Ezcema
- Failure to Thrive
- Feeding/ Swallowing Issues
- Fibular/ Tibular Hemimelia
- Food Allergies
- Funnel Chest/ Pigeon Breast
- G6PD deficiency
- Gastroschisis
- Glaucoma
- Heart Defects to include Hypoplastic left heart syndrome, Atrial septal defect, Ventricular septal defect, Tetroloy of fallot, Patent ductus arteriosus
- Hemangiomas
- Hemifacial Microsomia
- Hemihyperplasia
- Hemihypertrophy
- Hemolytic anemia
- Hemophilia
- Hep A
- Hep B
- Hep C
- Hernia
- Hip Dysplasia
- HIV
- Hydrocephalus
- Hypospadias
- Ichthyosis
- Joint issues
- Lead Poisoning
- Limb Differences (except club feet)
- Low Birth Weight
- Lymphedema
- Megacolon
- Meningitis
- Microtia and Atresia
- Missing Eye(s)
- Neurofibromatosis, NF1, NF2
- Nystagmus
- Osteogenesis Imperfecta (Brittle Bone Disease)
- Polands syndrome
- Polio
- Ptosis
- Pyloric Stenosis
- Rickets
- Sacrococcygeal teratoma
- Scabies
- Scoliosis
- Seizure Disorders
- Spina Bifida, Tethered cord, Meningocele, Myelomeningocele
- Strabismus
- Syndactyly
- Teratoma
- Thalassemia
- Transposition of the great arteries
- Tuberculosis
- Tumor
- Turner’s Syndrome
- Undescended Testes
- Velocardiofacial syndrome
Honestly, I was hoping to get more input. I didn’t want to have to look each of these up in Wikipedia and figure out what they are, and remember that something I looked up 20 minutes ago seemed to say pretty much the same thing. I’m not an expert in this, and even looking each thing up isn’t likely to do what I’d like to be able to do. Some of you out there have made yourselves experts in this – helping me to get this part right is going to give us more information in the long run.
Again, this survey will be an ongoing survey, and will hopefully gather a lot of information about the children being referred, matched, and identified. It will be for parents to fill out before they travel, so the information will not be about actual special needs, but about what the child’s paperwork says their special needs are.
To get actual special needs we’d need to do another survey that compares what the paperwork says to reality. But we’ll talk about that one another time, right now I’m trying to put together the ongoing survey.
February 23rd, 2010 at 9:29 am
RQ, Thanks for working through all of this.
I would like to ask if you could add transposition of the great vessels (sometimes also called transposition of the great arteries; TGV; TGA) to your list. I have seen quite a few children in the last two years with this heart defect. It is often unrepaired. This is what our daughter was born with, along with cleft lip and palate.
I think too it is worth a mention somehow that heart defects can occur with other systemic needs related to either clefting, neurological defets, urogenital defects, and/or limb differences. We are seeing more and more children placed on the shared list who have multiple needs of heart defects and at least one other systemic defect (often called midline defects).
I would not get into the various syndromes that can or cannot be related to this, because there simply are too many to mention here.
Please let me know if you have questions or this makes no sense. I am also happy to help anyone considering a referral with the multiple needs of cleft lip and palate and heart defects present together.
Thanks again, RQ.
February 23rd, 2010 at 9:32 am
Most people now consider Veliocardiofacial syndrome to overlap with 22q11 deletion and DiGeorge syndrome. If I were making the list, I would definitely place them together.
February 23rd, 2010 at 9:48 am
My daughter special need was that she was born premature. weighing about 2 lbs at birth. I don’t see anything on the list about that. Can you put a box at the bottom that says other with a line under where people could right in what there special need(S) are? Not sure if that would help or not. What you doing is a great idea. Thanks
February 23rd, 2010 at 10:39 am
I will be glad to help anyone interested in knowing more about cleft lip cleft palate. I know that is really common one, but I can also help with older child adoption. I am not exactly sure if you want people to tell you more about these conditions, be open to help talk about these, or to give you personally specific information about all of these things.
Our daughter also had a birthmark in her eye. Not listed as her special need at all, but I hear it is common in China. I guess that would go under accuracy at sometime, or things undisclosed?
There are many syndromes. I think you have some listed, and it is tricky because often you are guessing as to if there is a syndrome present or not. I can’t really help with that as our daughter did not have a syndrome thankfully, but it was something I was worried about that can go with CL/CP.
Thanks for starting this RQ.
February 23rd, 2010 at 10:56 am
My daughter has coloboma of the eyelid but I know coloboma can affect different parts of the eye. It was very difficult for us to get much info on eyes. If you could add that to the list I think it would be great. Thanks
February 23rd, 2010 at 11:00 am
While I can understand allowing people to group together some of the issues as they may not occur in a vacuum, I respectfully think it’d be a mistake to not break out the heart issues so we can just check off those conditions our child has.
There are some heart conditions listed there that are much more serious and involved (the potential repair) than others. Our daughter’s was an Atrial Septal Defect, typically one of the more minor heart issues (those hers did require open heart surgery to repair, which is still on the minor side, all things considered, if you talk to a pediatric cardiothoracic surgeon).
My two cents! I am thrilled to see this project being undertaken, esp with special needs becoming an increasingly popular option by families. It was a Godsend for us, and the way our daughter has thrived has inspired two local families to pursue it too (both with matches in hand!)
February 23rd, 2010 at 11:01 am
one of my dd’s listed special needs was extensive scarring, her other was cl/cp. I consider the scarring a minor need, but the doctors in China were extremely concerned about it.
I apologize if I missed it, but did not see scarring on your list.
February 23rd, 2010 at 11:02 am
The scarring not due to the cleft lip and palate, it was another injury that caused it.
February 23rd, 2010 at 11:40 am
You can probably group together with Autism – Pervasive Developmental Disorder, Hyperlexia, Aspergers Syndrome, Sensory Processing. I also don’t see Attention Deficit Disorder.
February 23rd, 2010 at 12:34 pm
RQ: I’m a bit confused. Are you asking for input? Or do you want someone to assist in generating the content?
As for input, here are 2 sources that cover the big ticket items:
http://nohandsspecialneeds.blogspot.com/
http://www.adoptspecialneeds.org/home
Of course, in the SN forum, there is a sticky at the top listing people who have adopted a child with SN and offering to be advisors.
If you want assistance, let me know. I need to squeeze it into the margins, and if there is no rush, I can take it on.
Another thought – some of the things listed here are US diagnosis. Does Aspergers actually show up on a child’s report? Respiratory allergies do not. The question is: do you wnat to understand what the diagnosis is in the medical report or do you want to understand what the US diagnosis is? They may not be the same thing.
February 23rd, 2010 at 2:01 pm
There is a thread in the forums Special Needs Room, “Q&A About Various Special Needs” that has posts about some of the SNs. I posted information I found on microtia atresia in there and also some links to additional information.
This condition will likely involve some degree of hearing loss in one or both ears and may require hearing aids, surgeries, speach therapy– this in a nutshell. So far, this SN has been a non-issue for us and our newest little girl is absolutely darling!
February 23rd, 2010 at 2:03 pm
There are also a number of syndromes that can be associated with Microtia Atresia– the kidneys form at the same time as the ears. This is not an absolute. So far, the lab work for our daughter has all been clear–including lab work on her kidneys, but nothing is an absolute.
February 23rd, 2010 at 2:07 pm
I asked this on the other thread yesterday. Is this a list of diagnoses as listed by China or what kids have been diagnosed with once they are home?
February 23rd, 2010 at 2:10 pm
I didn’t realize Amblyopia is on the special needs list? Our NSN daughter was diagnosed with it a few weeks after we were home – we noticed it almost immediately. Patching helped a great deal – so did our insurance.
February 23rd, 2010 at 3:03 pm
Sorry…long comment…I am not sure if it helps to talk about the cluster of birth defects that can occur with heart defects, limb differences and urology issues. In some cases, these cluster of birth defects have been given nemonic names to help physicians do work ups of these defects and malformations that occur due to problems in the first trimester of fetal development.
My DD#2 SN was listed in China as anal atresia (repaired imperforate anus with vaginal fistula–basically misplaced anus) and extra thumb (not repaired). She turned out to have what is called in America: VACTERL association which stands for Vertebrae malformation, Anal issues, Cardiac malformations, Trachea-Esophagus malformation, Renal Abnormality and Limb differences. To have this cluster a child has 3 or more malformations and my daughter had 4 once we did all the physical workups with specialists. They have all been surgically corrected. Our National Institute of Health currently has a clinical trial open to study why VACTERL happens…whether it is genetic, environmental or due to diabetes/age in birth mother. We have not enrolled our daughter because we don’t know her history or genetic background.
I was told by the pediatric surgeon that the difference between a cluster or association of birth defects and a SYNDROME is that a syndrome will affect future development while a cluster/association will not. (All her malformations have been corrected surgically). He refused to call it a syndrome and in fact some doctors seem rather put off by the nemonic VACTERL because it isn’t a REAL condition. It sure helped me get her the work ups she needed though.
Having said all this…long story short…I would advocate listing out all the common REFERRED conditions. Limb differences should include something like polydactyly (extra fingers). I forget what extra toes are called. We DIDN’T know what all the conditions were when we got referred. We should just check off the ones we knew at referral (my opinion.) This seems like a good list as far as I can tell. If you have an “other” category you will get a mess of answers. Better to have something called “Not Listed Here” and leave it at that.
No one in China assessed her as having sensory disorder but she DEFINITELY has that and we have worked diligently to support those needs too. That would NOT be on your list if you only did the diagnoses given in China. My daughter is also unique genetically but we didn’t learn that until we were in America. I tell my husband that she is a walking miracle to be alive, looks regular, functions mostly regular. But, if you take the probability of all her conditions (genetic issues are random and independent of her VACTERL) she is a one in a million young lady. (BUT…here I digress.)
February 23rd, 2010 at 3:52 pm
Asthma is not on RQ’s list and not on other SN lists that I have seen either. Asthma is less common in China than in the West. But it is not an unusual condition, with around 2% prevalance rate for Chinese schoolchildren. Maybe astma in under-diagnosed in the orphanages as I rarely see this discussed on the board?
February 23rd, 2010 at 4:38 pm
I disagree that a syndrome has to affect future development. “Syndrome” means characteristics that occur together, much like what you described as clustering. But there are many syndromes that do not always affect development.
Example: Goldenhar syndrome – a combination of microtia/atresia, cervical hemivertebrae, skin tags, hemifacial microsomia, eye tumors, facial clefting and kidney malformations. My son has this, and his diagnosis from China was microtia/atresia, eye cloudiness and skin tags.
Microtia/atresia sometimes occurs as part of a syndrome, so we suspected that he had one, so the other diagnoses (except the facial clefting which he does not have) were not a surprise to us.
Absolutely no developmental issues though – cognitively he is doing very well.
Our daughter had a VSD, anemia, delayed development, bowed legs (which isn’t on RQ’s list) and rickets. Her Chinese diagnosis was just the VSD. She also had lead poisoning, which isn’t ever listed as an SN in China’s paperwork.
February 23rd, 2010 at 6:50 pm
ABSOLUTELY agree with brennensmom. I hate it (sorry but I do) when the word syndrome is misused to state “will affect future development”. Not necessarily so and they can all be on such a spectrum.
And some syndromes (though not all) are not genetic in origin. Some can be caused by environmental factors as well.
I guess I don’t understand what RQ is trying to do. I think LWB and NHBO have done a great job on helping PAPs understand the face of various SNs more.
I stand by my comment that TGA/TGV be listed. This is what our DD’s referral paperwork had along with her other 3 heart defects. All were listed and all were found to be as listed.
Another note: China tends to assign degrees to Cleft lip and palate. If we are wanting to share what the referral says, that might be worth laying out as well b/c the question comes up OFTEN in the SN room: “what is 3rd degree CL/CP?”
This too was how our DD’s cl/cp was listed. Our surgeon does not use this type of naming system, but he did say in China that usually means “complete” (from gumline (alveolar) to back of throat and involving hard and soft palate).
HTH
February 23rd, 2010 at 7:29 pm
Hi RQ,
Down Syndrome is also referred to as Trisomy 21 in the waiting child list.
February 23rd, 2010 at 9:24 pm
And another one: Beta Thalassaemia Major is listed as Mediterranean Anaemia in the waiting child list.
February 23rd, 2010 at 11:11 pm
I’m confused — do you want more heart issues listed? Or are you just going assume people will see heart defect and know to go there? If you want more, here are Sam’s:
Hypoplastic left heart syndrome, tricuspid atresia, ASD, VSD, transposition of the great arteries, pulmonary atresia, pulmonary stenosis, PDA
February 24th, 2010 at 3:42 am
RQ!
I understand what you are doing and I appreciate it a lot! I don’t think anyone anywhere else did the list you are tryingto accomlish, they all have missing diagnoses or in some way are not structured enough. I also understand if you are a bit disappointed in the lack of help you are getting from us. I hope you get some behind the blog too, but one thing you need to understand is that no one of us are as much of experts as you’d think. Diving into the sn diagnoses of orphaned chilren in China is a mess. There are lots of reasons for this, one is the lack of a site that lists them as you are trying to. Another is that China uses a somewhat different terminology. A third is that the subject is so huge that it is difficult to even feel sure about the few diagnoses you choose. I, for example, know quite a lot about limb differences, but I’m still not sure if you should include “amniotic banding” or not. (I think you shouldn’t, but instead let it fall under limb differences, since it sometimes can be called AB though not listed as such from China).
As usual, you are bringing things to a higher level than anyone else did before, plus adding a lot more structure and in the end you process it all statistically too. All this combined is what makes your site such a HUGE help to adoptive parents. Please keep doing this list of sn’s until it is done. If you need more help from us in the sn room, maybe we can organize it somehow? Like, some doing this part of sn’s, some doing that? Thus in the end narrowing down what sn’s we don’t even know much about and also sorting out what diagnoses should be clustered in one and what maybe should be separated instead.
You know, you really are a very intellgent woman. You have the ability to see structures a whole lot better than the average, and that also give you the ability to understand what needs to be done. Many of us don’t see that until you are done, and that’s when we discover what wonderful help you are for us all. That also unfortunately leaves us less helpful when you are in the process of something like this. I’m sorry for that. Though I’d be happy to help if there is anything more you’d like me to dive into. Just tell me what.
February 24th, 2010 at 8:02 am
zacksis – I’m asking for help. If I need to combine something, or if I’ve got more than one thing listed that is really part of the same thing, or if there is something here not listed that really should be, then please tell me so I can get it fixed.
I’m going to leave this post up today, and hopefully get some more input.
February 24th, 2010 at 9:35 am
My daughter’s paperwork simply stated that she had “Complex Special Needs”… which meant that she was born with a single specific special need; however it affected her major organs – heart and lungs.
February 24th, 2010 at 10:47 am
My daughter was born with gastrointestinal atresia of the esophagus. It was corrected with surgery 3 days after she was found. She’s doing great now.
February 24th, 2010 at 11:05 am
LWB produced/published a SN book. It might be useful to browse thru it and see how they organized the SN…
February 24th, 2010 at 11:10 am
I received a NSN referral in October, but my daughter has an extra thumb (polydactyly). We had to scramble to get all our paperwork changed before we went to pick her up and at her physical in China, the doctor said she WAS special needs.
February 24th, 2010 at 2:10 pm
We recently looked at a child’s file that had epilepsey. I think that should be considered.
February 24th, 2010 at 3:06 pm
I remember seeing one little boy whos SN was that he had had a kidney surgically removed.
February 24th, 2010 at 3:07 pm
You might add low vision as a special need. There are common eye issues like nystagmus, glaucoma, and cataracts that are frequently referred that should have their own headings, IMO, as you have done. There are a host of lesser occuring conditions such as coloboma and Peter’s Anomaly that can cause moderate to severe visual impairment but not necessarily “blindness” as people think of it (i.e. needing Braille and a white cane). I think it would make sense to lump all of the visual disorders that don’t fit into the categories you have up already but also don’t rise to the level of “blindness” into a category called low vision. That is the correct terminology for people with visual impairments who need adoptive technology to function optimally, but don’t necessarily need a cane or Braille.
February 24th, 2010 at 5:37 pm
imajine- our daughter’s SN was also an extra thumb and she was on the SN list for this minor need?!?!? She has the extra thumb removed and now no one ever believes she was SN!
February 24th, 2010 at 5:59 pm
I’m usually a lurker, but I noticed that a SN that has not been addressed was Port Wine Stains and Sturge Weber Syndrome, which can be associated with a port wine stain on the face and covering the eye. We know of several children who have just PWSs or both PWSs & SWS. Here’s the link to the Sturge Weber Foundation: http://www.sturge-weber.org/.
February 24th, 2010 at 7:34 pm
I think it will be very important to stress that you want to know what conditions were stated in the REFERRAL of the child. I certainly am no expert on all these conditions but I do know that “Turner’s Syndrome” is a female genetic issue. Does CCAA do genetic testing? I see conditions listed that were known about DD and some not known until six months later after coming home. I know that is a separate issue from what you want to do.
I know you’ll be able to handle that in your directions for the survey though. You are really amazing to tackle this when no one else has tried.
February 25th, 2010 at 9:46 am
Our daughter’s paperwork stated she had congential heart disease (VSD) and tendon hyperreflexia / high muscular tension in all four limbs. Hyperreflexia is commonly associated with cerebral palsy, but her paperwork did not specifically say cerebral palsy.
February 26th, 2010 at 3:11 am
As I said before, I doubt that you are getting the help you need to get this list put together the way you want it, if you do it this way, here. But that is of course up to you, and maybe it doesn’t matter that much. And also, about the amniotic banding syndrome, I do lean towards taking it away and including it in limb differences. I see no reason to have it as it’s own diagnosis, but I really think someone else also should comment on it before you decide.
March 5th, 2010 at 4:20 pm
RQ,
We have not gotten TA to get our DS yet, and he was listed as cl/cp, but based on research I’ve been doing, he appears likely to have van der Woude syndrome, which is a genetic disease that involves cl/cp and mucosal lip growths or “pits” and can involve more. Until we travel and bring him home, we probably won’t know the extent of his issues. I will let you know as soon as we know more.