Wednesday, November 16, 2011

Fragile X testing

The results of the Fragile X test were supposed to be in after 2 weeks, so I called to find out if they were back. They told me that the test they had done here at Duke was inconclusive, and they needed to send the sample out to the Mayo Clinic to do a different test. So it will be another 2 weeks before we get the results back.

The test they did here was the PCR. It looks for the normal copy number of repeats, which is around 30. (Fragile X is caused by having too many repeats in this region: around 30 would be normal, above 200 would be Fragile X) Since Sweets is a girl, and girls have two X chromosomes, they are looking for two bands on the PCR in the normal range. So they might see a 28 and a 30 on a normal girl. But on Sweets they only saw one band.

That doesn't necessarily mean she has Fragile X. She could just have the same number of copies on both chromosomes. If both of her chromosomes had 30 repeats, then they would just see one band at 30 - they can't separate the chromosomes. They can't tell from this test if they are seeing one chromosome's 30 or two chromosome's 30's. Two chromosomes with 30 repeats would still be normal.

If she has Fragile X, then it would only show one 30, so that is still a possibility. In that case, she might have one 30 and one 400, but the 400 is too big to show up on this test apparently. They can only see the repeats in the normal range. So, they have to do another test on her sample that can also see the big repeats, called a Southern Blot. The Southern Blot is a radioactive assay, and not a lot of places do them anymore, so that's why the sample had to be sent to Mayo for this test.

It's all the waiting that kills me really. It feels like this whole process is hurry-up-and-wait. Let's test her for this, wait months for the appointment, then wait again for the results, then when they are negative move on to the next thing and repeat. It makes the whole process take a very long time when we have to wait months between appointments. And the more specialized the docs, the longer we have to wait to see them. I remember when I thought the 3 month wait to see the neuro was a long time. Then I thought the 6 month wait to see genetics was a long time. Now it is going to be at least 8 months to see the developmental ped. It just keeps getting worse! I'm so sick of the waiting. I just want to know something!

Thursday, November 3, 2011

Genetics and audiology

Sweets had her long-awaited genetics appointment on Monday. They ended up wanting to wait for the results from the audiology re-test. If she did have a hearing loss, they would sequence her connexin-26 and screen her with an oto-chip for hearing genes. If not, they would make a different plan.

We already had our CDSA audiology scheduled for Wednesday, but they said they would like us to be seen by an ENT before they decided. They scheduled us for the Duke ENT, but the first available was not for 8 weeks, which was disappointing. I decided to call another local ENT to see about the wait there, and they said they could see us right away! I made an appointment for the next day, Tuesday.

We went to the ENT Tuesday and they took us in for the booth test. Whereas at CDSA we always did this test with speakers only, at the ENT they were able to do it with the headphones! They had Sweets sit on my lap while I bear hugged her to keep her arms down. She fussed when they put the headphones on her, but as soon as they started playing sounds in them she calmed right down! They were able to get the whole behavioral audiology done with the headphones, and they said they did NOT detect any hearing impairment! What a test!

We still went to the CDSA audiology appointment on Wednesday, where they tested her with the probes while she slept in her carseat. That worked out well too, and they also said that her hearing checked out with that test.

So, now it looks like hearing is NOT an issue.

So, what does that mean for genetics? Genetics said that they will not do the connexin test or the oto-chip. Instead, they want to test her for Fragile X. This is something that affects boys moreso than girls, because it is a gene on the X chromosome (and boys only have one, so when it doesn't work they are affected). Since girls have two X chromosomes, they can have a defect in one and still make enough protein with the other to be fine. However, some girls with the defect on one chromosome can show certain symptoms anyway. The severity ranges greatly and different girls display different subsets of symptoms to different degrees, some showing none at all. They said that they aren't saying that they think she has this, but many of her symptoms fit the ones on the list, so they would like to just be sure. Mostly they just want to rule it out.

One nice thing, is that they already have her DNA from when we had the microarray done, so she doesn't have to give blood again. They will just run the new test on the existing sample. It should take 2 weeks to get the results.

Other than that, genetics recommends that we see a developmental ped next. I called the one they recommended, and the wait is 8 months to get in with one doc, and 14 months to get in with the other! So I got on the 8 month waitlist. The 14 month waitlist doc is the one who specializes in Fragile X though, so I asked if I would have to wait that long if it turns out she does have that, and they said no, they have a Fragile X clinic on Fridays just for those kids, so the wait is not as long. Not that I think she has that, but it's good to know that we wouldn't have to wait 14 months to see a doc about it if she does!

Monday, October 24, 2011

Upcoming genetics

We had a karyotype done through our regular pediatrician. It was one of the first tests she did when delays were noted at 12 months.

We didn't get FISH, which can look for smaller changes than would be visible on a regular karyotype, because FISH is targeted - it looks for specific changes that you ask for. But you need to suspect something first and test for it. If you don't have anything specific in mind, it is not useful.

We were offered a microarray test at our neurology eval. They said that it can detect an abnormality in like 15% of cases that already had a "normal" karyotype because it is a more sensitive test (but looks for pretty much the same type of thing).

We have a further appointment at pediatric genetics because they still haven't found anything specific, so this will be an even more detailed testing.

They keep testing her because she doesn't have a diagnosis yet, so we don't know the reason for her delay. Everything she has been tested for so far has come back negative. Maybe if you already have a diagnosis, they wouldn't need to keep testing you.

Tuesday, October 4, 2011

Audiology, asleep?

We are going back on Nov 2 to retest audiology, but I changed the appointment for during her nap time. She won't let him stick the probes in her ears, so I am hoping that she will fall asleep in the car on the way there, and we can do the test while she sleeps, according to my audiologist's blog. The audiologist said we can call when we arrive in the parking lot and he can bring the equipment down to the car and do it on her while she is asleep in her carseat. Hopefully she will just sleep through it and won't wake up! I'm hoping this will give us better answers than just the behavioral test did, since with that I question whether she is just bored by the test and that's why she isn't responding.

We know that I am a carrier for connexin 26 hearing loss (167delT), which could be a progressive hearing loss. BUT my husband is not a carrier of either of the two most common mutations in connexin 26, so it shouldn't affect her as far as we know. There are many other uncommon mutations that conceivably could have passed to her, which in combination with my 167delT could still result in hearing impairment. We are going to genetics on Oct 31, and I think that is one of the things they will test her for then.

Wednesday, September 28, 2011

failed audiology

Sweets failed her audiology this morning.

The test looks like this: We sit in a booth, she on my lap as though I was a chair. The audiologist watches through a window. He plays sounds - music, tones, or white noise - from speakers coming from the front two corners of the room. If Sweets hears the sound, she would presumably look in the direction it came from. If she looks to the correct corner, a box in that corner lights up and shows her a toy (such as a teddy bear or monkey).

She had her first one at 12 months, which she passed just fine, and then one at 20 months that she passed but didn't respond to all the sounds (music better than tones). And now this time she did not respond to many of the sounds unless they were loud, and the ones she did notice she couldn't localize. It could be that she just wasn't very interested in the noises and didn't care to look for them I guess. She fussed too much to put anything in her ears to test them individually, which she has never allowed yet. The audiologist did seem a little concerned today

The audiologist wanted me to take her right to the ped to have her ears looked at to see if she has an ear infection or fluid that could be affecting the test. So we went straight there and they looked, but said that she doesn't have anything. Just a "slightly thickened" ear drum on the left side, which can indicate a prior infection, but could also be normal. Her right side was totally in the clear.

So we will go back to the audiologist in a month and just re-test her. I'm not sure what else we can do on a kid this age. I do feel like she can hear me, and she definitely enjoys music. But this might explain some of her speech delay issues, if it turns out she has some hearing difficulties.

Thursday, September 22, 2011

New speech therapist, new school

Sweets has been with her new speech therapist for a month now. Her old SLP moved away, and this one is from the same agency. A week after starting with the new therapist, Sweets started at CLC. This is the developmental preschool. It is on the same campus as Munchkin's elementary school, making it super convenient for us too. They are 50% typical and 50% special needs there, and the lead teacher in each room is certified in special ed. So even though we dropped our developmental therapy in July, I feel like she is still getting a similar service by being at CLC. If Sweets qualifies for developmental day on her IEP, then she will be able to go to this school for free, but for now we pay full tuition.

I am happy with her care there. She seems to be enjoying it. She seems to be making "friends" as much as that is possible for her. A few of the children seem to get excited to see her when we come in each morning. Several of them also have similar delays to Sweets.

They are using our cloth diapers and seem to have totally adjusted to that. They were nervous at first because they haven't had a kid in cloth diapers for like 20 years or something (!!). But they were willing to try and they are doing fine. They are using more diapers than at our previous home daycare because our previous care provider had Sweets going pant-less a lot of the day trying to help her learn to use the potty. Sweets is pretty good about staying dry if she is not wearing a diaper, and she will sit on the potty, but she WILL NOT pee in the potty. I don't think she really gets what she is supposed to be doing even. When she has to go, she will request a diaper (by signing CHANGE). They do let her try to use the potty at CLC, but they tend to keep her in diapers all day otherwise.

Surprisingly, the staff here do not really know much sign language, and there are not other kids who sign. I would have expected that to be more common in a school like this. They seem willing to learn, but in the time that she has been there they tell me that she doesn't really sign very much anyway. I don't know if that is because she is using speech so much more, or because they don't understand her signs so she isn't doing it because it doesn't work, or maybe she really is signing and they just don't realize it.

CLC does have their own therapists, but they do not accept our insurance so we are not using them. They do not mind that we bring in our own outside therapist. If Sweets qualifies for IEP services, then she will be able to use the school therapist for no cost to us once she turns 3.

Like our previous SLP, our new one is also in her fellowship year. Some people, like our CDSA coordinator, don't seem to like that and would prefer to work with more experienced therapists. But really, I don't mind at all. They may not have a lot of experience, but they are fresh out of school where they have just learned the most up-t0-date techniques and theories. They are fresh and young and excited and have big ideas! They also have to be supervised by an experienced SLP, which means that there is another person with experience monitoring Sweets' case.

I like the new therapist. I have only observed her therapy once so far because it is less convenient for me to observe at CLC being that it is further from my job. I did talk to her by phone for about an hour the other evening and gave her some information and history on Sweets that hadn't been passed on to her in the switch. We discussed that with the current rate of Sweets' progress, I was wondering if she would even qualify for IEP once she turned 3. It seems like so much progress to me, but I don't have a good handle on what is "typical" anymore. She said that she thought Sweets would qualify, if only for articulation delay, but possibly for language delay as well. But that is still 6 months away, so it is hard to predict. But it is almost time to start thinking about the transition from early intervention to IEP.

Wednesday, August 31, 2011

What's the catch?

I got an email a few weeks ago from the Family Support Network, which is a service for families of children with special needs. It said they were looking for families to mentor students at UNC who are graduate students in early childhood, special education, speech and language pathology, and occupational therapy. A part of their coursework requires them to spend time with a family and do a service project for them. It requires a minimum of 15 hours from the student over the fall semester, and the service hours may include babysitting if we don't have more specific needs. Also, they will pay us $50 for our time. So I signed up, and they said they would let us know if they matched us with a student.

So, I just got an email that they matched a student to our family, so we are in. They gave us her name, so we googled her (of course...). And it turns out that she is our age (I guess I was expecting someone like 22 years old), she is an experienced pre-school teacher, she currently works at TLS (the Reggio daycare that Munchkin was at until she started K) as co-lead for the half-day program, and she is getting her masters in Early Childhood Intervention and Family Support. She sounds very qualified to babysit for us for free!

She is supposed to just hang out with us for some of the hours just observing our daily lives, eat with us, come to the grocery store, whatever. She can observe Sweets at her daycare and in her speech therapy. She can come to IFSP or IEP meetings (though I don't think we have any scheduled during this semester) and doctor's appointments. If she can come with us to the genetics appt in Oct that would be great because the paperwork warned us that the appt would take 3 hours and that you might want to bring someone who can occupy your child while you talk to the doc.

I'm trying to think of other service-y things she can do. I'm thinking she can help us organize our toys/games which right now are just all over the place and there are so many that it is overwhelming. One of Sweets' evaluations had suggested implementing a different kind of toy system where only a few are available at once so that she isn't overwhelmed with the choices, so maybe her experience as a pre-school teacher would help with figuring out the best way to do that and which toys to leave out, etc.

My husband keeps saying, what's the catch? I don't know!

UPDATE: Well, we were informed that our student dropped the class. And the other students are already paired with families. So I guess we are not doing this now...

Wednesday, August 10, 2011

Many new words!

Sweets has been trying to say a lot of new things in the last 3 months. Since the speech evals she has gone from saying about 10 words/word approximations to over 50 (that I can understand, not other people). So her spoken words about match her signs now! For a long time she only said two repeated syllables, such as Baby, Mama, Dada, Pee Pee. But now she can say two different syllables - "Eee Ahh" means Cereal, "Ahh Ooh" means Thank You (or Love You), "Bah Pooh" means Waffle (or Apple).

Spoken Words

at 18 months
1- Bye-Bye
2- Hi
3- Uh Oh

19 months
4- Baby
5- Night Night
6- Dada
7- Mama

20 months
8- Cheese
9- Done
10- Up

23 months
11- bubble
12- Drink
13- Milk
14- More
15- pee-pee

24 months
16- Shoes

25 months
17- Pat
18- No

26 months
19- Apple
20- Ball
21- Hot

27 months
22- Bird
23- Boat
24- Book
25- Car
26- Cat
27- Cold
28- Daddy
29- Dog
30- Door
31- Down
32- Eat
33- Juice
34- Love You
35- Mine
36- Outside
37- please
38- poop
39- Poppy
40- Potty
41- Shoo-Whee
42- Socks
43- Star
44- Yes
45- Banana
46- Bar
47- Stop
48- Thank You
49- Wet
50- Hooray

27.5 months
51- Cereal
52- Here
53- Moon
54- Off
55- On
56- The End
57- Waffle

Monday, June 20, 2011

Communication Boards

Our communication boards are here. The people at the state early intervention office made them for us after our recent speech eval. We are supposed to use them to help prompt her to say the words verbally. She already knows how to sign pretty much all of these words. They also gave us a communication device to use, which has different communication boards that you put in the device and then you can push on the picture to hear the word. It reminds me of some books we have like that, except they are customizable. Here are the communication boards:

One note - I have to say that I really appreciate that she made the picture for "Milk" a picture of nursing. That is quite applicable to our lives with a nursing toddler! And it is certainly a frequently needed word for Sweets!

Thursday, June 16, 2011

Financial Complaint Letter

June 1, 2011

I am a parent of a child enrolled in early intervention services at the Durham CDSA. My child has been in the program for one year now and receives CBRS (developmental therapy), physical therapy, and speech therapy. Speech is her biggest issue and she has speech therapy twice per week.

Today I had my yearly IFSP review and was asked to bring my tax forms for the financial review as well. I was aware that the financial system was changing because I received a letter asking me to bring my tax documents, but my impression had been just that you would now require verification of income instead of using self-stated income. However, the change is much greater than that. Previously, the income calculation for the sliding scale was my gross income minus taxes, daycare expenses, and medical expenses. Now I am told that it is simply based on gross income without any deductions. Your website says that “It is likely that the majority of families will see little or no increase in the cost for their child's early intervention services,” however that is not true at all in my case. Not deducting my taxes, daycare, and medical expenses makes a difference of $45,000 for me, and since you have not adjusted the sliding scale categories to take this difference into account on the income scale, I have suddenly gone from the 40% bracket to the 100% bracket. When you say that the majority of families will see little to no increase in the cost of services, you must only be referring to those at the very top and very bottom of the bracket already. This cannot be true for middle class families, particularly those who have daycare expenses!

In addition, I also found out today that CBRS services will no longer be covered and I will have to pay for those as of July 1, which means that I will have to pay 100% for four therapies per week instead of 40% for three therapies per week. My current weekly expense is $24 and it will go up to $80 as long as my insurance is used. However, I only get 75 therapy visits per year combined under my insurance plan, so after my visits run out, I would be paying almost $400 per week for therapies. If CBRS visits will now count toward my insurance visits, then that just means I will run out of those visits that much sooner.

I have been trying to budget in advance for my daughter’s therapies, knowing that I will eventually run out of insurance visits and planning for that. However, adding CBRS to the mix, decreasing the time to when my insurance visits will run out, and increasing my cost share from 40% to 100% has really given me a shock. This is a huge change in my financial situation to spring on me without notice. As a result, we are now planning to cut CBRS and PT from my daughter’s plan and focus just on speech. This will decrease our monthly costs, and increase the amount of time we have until we run out of insurance visits. However, my daughter will be losing services.

I can’t imagine that we will be the only ones to cut services that we would otherwise like to have for our child due to of this new financial policy. I’m sure that many families will be put in a similar position and need to cut services. Our CBRS therapist was dismayed and said she expects her remaining clients to become mostly only the Medicaid clients, so I am not the only person who expects this. I understand that there is a 5% monthly cap, which we will certainly make use of, but 5% of gross income is a lot and I doubt that most people have that kind of flexibility in their budgets. If the point of the state Infant Toddler Program is to get more kids under age 3 into the early intervention services that would help them, then this new policy does the opposite because now kids like mine will be getting fewer services.

This new policy was not effectively communicated to me or even to my service providers in advance of my IFSP meeting. My CDSA service coordinator did not even realize that my taxes/daycare/medical would no longer be deducted from my income for my sliding scale calculation. She can’t communicate this information to me if she isn’t informed of it herself. When I am trying to plan and budget my life, I need more notice than this for such a major change. I feel that a notice describing the changes in the financial policy should have been sent out to families as soon as the changes were made. In addition, families who are currently receiving CBRS need to be informed that in one month they will have to start paying for this service. Today was the first I heard of it, and it’s only because my yearly review was due. I looked at the documentation on your website and did not find anything explicitly describing that the method of calculating income is significantly different, nor that CBRS would no longer be included. The new policy is there, but there is nothing contrasting it with the old and detailing the differences. These changes need to be made clear to the service coordinators and the families using these services.

I don’t understand why this drastic change was made to the sliding scale calculation, nor why you would think that this would have little to no effect on families. I don’t understand why I wasn’t given more notice and information about this change so that I could plan and budget for the future. I don’t understand why my providers and service coordinator are not even well enough informed about the changes in order to accurately convey the information to me in a timely manner. I am disappointed that CBRS will no longer be covered, and that today was the first time I was told. I am disappointed that I will be paying significantly more money than I had budgeted for significantly fewer services. And I am disappointed that my daughter will be receiving fewer services because of these changes.

Thursday, May 26, 2011

Duke speech eval

We had a speech eval at Duke this week, for another opinion regarding apraxia. Or just for another opinion in general on what could be going on with Sweets. We were there for about 2.5 hours and while Sweets was shy at first (understandably), I think that she got comfortable and performed well for the eval.

First off, this SLP does NOT think that Sweets has apraxia. She said that there are too many things that don't fit. She said that maybe as she gets older she may show more signs of apraxia, but right now she doesn't. She also said that Sweets is doing so many good things that she feels really good about her progress, and she thinks that we have a good chance that Sweets will just "catch up" by the time she's 5, with therapy and hard work, of course. So that is very encouraging!

She did a test called REEL-3, which is a different test than what we had last week. On this test, there is a series of yes/no questions. The first number is based on when she gets 5 "Yes" answers in a row, and the second is based on when she gets 5 "No" answers in a row. For some reason, and oddly, Sweets actually scored lower on receptive language than on expressive language on this test. Neither the SLP nor I felt that this accurately describes Sweets, but that's just the way the test came out this time. She said that once she is 2.5, they could do a different test on her that might be more accurate. It seems like everyone uses a different test and it's just whatever test they like - not very "standard" at all.

Receptive Language: Raw Score 45 | Age Equivalent 16 months | Ability Score 78 |
%ile Rank 7%

Expressive Language:Raw Score 48 | Age Equivalent 20 months | Ability Score 85 |
%ile Rank 16%

Language Ability Score = 78

90-110 Average
80-89 Below Average
70-79 Poor
<70 Very Poor

I told the SLP about the recommendations from the EI eval, regarding using the picture boards and focusing on 20 words. She said that she didn't want to say that she disagreed with the other SLP, but that it's definitely not what she would have recommended. (Sounds like she disagrees to me...) She said that she does use picture boards for kids who can't/don't sign, but that since Sweets can sign that she wouldn't have recommended a picture board for her. She also said that she would continue to work on all vocabulary with Sweets. She said continue to sign and say the word together, and encourage her to try to do both as well, instead of just signing. She does this sometimes, but often she just signs. Our usual pattern is that she signs, I ask "Do you want XXX?", she signs again while approximating XXX. So we are to try to get her to do the approximation up front and prompt her with less. So instead of saying the whole word, I can try to shape my lips, or look at her expectantly, to give her the idea that I want her to say it. Gradually over time, of course.

She did demonstrate this technique with Sweets, and Sweets responded to it pretty well. She even got Sweets to say "On" which I have never heard her say before. This is a meaningful new word because it is a VC (vowel consonant) word, and all of her others are CV sounds, particularly CVCV words where C1V1C1V1, ie Mama, Dada, ByeBye, PeePee, NightNight (NiNi).

In the end, I felt a little confused because the two evals differed so much in their assessments and recommendations that it makes it hard to know what to do. It is looking like Sweets does not have apraxia, though we don't know what she does have either yet. Or if she is "just a late bloomer" after all this.

Monday, May 23, 2011

May speech evals

Sweets had her CDSA eval last week for speech. The SLP said that there are some features consistent with apraxia, but others that are not. At this stage, she didn't rule it in or out. We will have our Duke eval this week, so I'm curious whether they will say anything different. I have heard before that she may be too young to really be able to tell because she only just turned two. The good news though is that her receptive language seems fine, and her cognitive tested within average range this month too. Her expressive language is also not bad, in that she can sign to communicate (and she is learning new signs rapidly!). Her speech skills tested at 9-12 month level.

The CDSA eval SLP suggested making a list of about 20 words that Sweets would want to use frequently through her day, and working on those specifically, aiming for consistency and accuracy. So a more focussed approach instead of a broader approach. She also suggested that she could make us a set of picture cards for those words, one for home and another for daycare, to help Sweets identify what she is saying to us. That seemed like a good idea at the time, but as I think about it more I'm not really sure what that will give us, considering that Sweets can already sign all of those words (and a lot more) to give us a cue for what she is trying to say. What advantage would picture cards give us over the signing that she is already doing?

Sunday, May 15, 2011

Sure Step!

Our Sure Steps have arrived! I took Sweets for her fitting on Friday for her new SMO orthotics. The Sure Steps are made especially for her based on the measurements the orthotist took on her a few weeks ago. We got the flowers and bugs pattern and they are definitely nice. We also bought the Sure Step shoes to go with them, because I had heard that it can be hard to find shoes that fit over orthotics. These have a wide toe box and wide heel to accommodate the orthotics, and there are two insoles that are removable to fit with or without the orthosis.

We arranged the payment so that the insurance will be billed first. They will charge us a deductible (around $300-350) and then they cover 60%. What's left will be charged to the state early intervention, and they will pay 60% of that. In the end, I expect that we will have to pay about $150, but we'll see how it ends up.

I expected Sweets to fuss when we put the Sure Steps on for the first time, but she really didn't at all. She even seemed to like them right away! The orthotist showed me how to put them on her feet, pushing her big toe up and to the side to get her heel in deeply. The velcro strap is supposed to be pulled tight - "Snug is not enough" - so she made a mark on the outside so that we would be sure to pull it to the right amount.

SureSteps on, without shoes

SureSteps on with shoes

She is supposed to wear them for 1 hour the first day, 2 hours the next day, 3 hours the next day, etc until after 1 week she will be wearing them full-time. Today is day 3 and she seems to do really well in them. She is walking well, and best of all - she isn't falling down a lot! The reason we got them in the first place is because Sweets pronates her feet when she walks, causing her to fall down frequently. These are supposed to help with that, and they seem to already! They should also help her learn to run and climb.

Wednesday, May 4, 2011

Developmental Eval - cognitive

Today Sweets had a developmental eval. The eval was done at our home and took about 1.5 hours. By the end, Sweets was just not interested in participating anymore. I was surprised that she did the 3-piece puzzle (she usually has a lot of trouble with that), but she would not even really try the 9-piece puzzle. She just got up and walked away! LOL The evaluator did a test where she hid a toy under a washcloth to see if Sweets could find it. At first she found it every time. But when the evaluator hid the toy, and then moved the washcloths, Sweets failed to find the toy every time. There was also a part with matching pictures, which Sweets participated in but failed every time.

The evaluator used the Bayley Scales test again, which is what we had last year too. This time, she scored a 90 for cognitive! Yay! Last time she had scored an 80, which is borderline delayed, but a 90 is within average range! We are very excited about that, because as long as she can understand things, even if she can't speak, she can still learn to communicate in other ways. She's already communicating well using sign language, and I know there are many other communication methods too. Sweets was also scored for social/emotional and scored at 93, but we weren't really concerned there. She did not get scored for PT, adaptive, or speech because she recently had a PT and OT eval, and she has a speech eval coming up this month.

Monday, April 25, 2011

upcoming IFSP review

I was speaking to our early intervention coordinator about Sweets' upcoming IFSP yearly review. We decided to have her evals before the IFSP review to have a better idea of where she stands before making new goals for her. She will have a developmental eval, and also a speech eval. The coordinator brought up apraxia to me, not knowing that I am already looking into it, and suggested that they can eval for that. I updated her about how the SLP didn't think that Sweets could really be diagnosed with apraxia until closer to 3, and how my ped said they could do the eval at Duke at age 2 so we have a Duke eval scheduled. She said that CDSA can do an eval for apraxia too, so we are thinking we will do both and have a 2nd opinion on this. I have also asked the SLP for more information on what she thinks fits or not about apraxia for Sweets at this point and am waiting on an email back on that. Unfortunately, the SLP will be out of town for our IFSP review, and will miss it. Considering speech is her biggest issue, that is a shame, but she will give a report for the IFSP before she leaves.

We also had Sweets measured for SureStep orthotics. I had the impression from the PT that it would cost around $150, but that is way off - it is more like $1100! Some of it is covered by insurance, and CDSA will also pay some, so hopefully in the end we'll only have to pay under $300, but I still don't know how much.

Thursday, April 7, 2011

speech and apraxia

The only words that Sweets has that are really pretty clear and that she uses in context are Baby, Dada, and PeePee. Sometimes Bye-bye, sometimes Mama, but those require prompting. For other words, she will sometimes make an approximation sound, but it requires prompting. For example, she signs MORE, I say "You want more? More, More, Say More", and she will say "Muh". Words that begin with M, D, or B, she will usually do that for, just saying "Muh" or "Duh" or "Buh" with prompting and after signing. She also says "Buh" for Up. Sometimes we think she is trying to say "Love You" but it sounds like "Ahh Ooh" and we aren't sure. Some words she really tries to say, but they come out like just a garbled mess, like Shoes and Cheese. And those are about all the things she says. She will repeat more individual sounds with prompting if she is in the right mood for it (including "FFF" and "Puh" and "Lah"), and she will babble various sounds together as well. She also frequently makes a "Digga Digga Digga" sound in her babbling, which I don't think means anything, or if it does we don't understand it. Perhaps she is too young for the apraxia evaluation because she doesn't really have enough words to look at a picture and say what it is?

She knows about 40-50 ASL signs and communicates pretty effictively with sign. She's had her hearing checked twice. She will turn 2 this month.

We have signed her up for CLC, the inclusive special needs daycare, for this fall. Sweets will be be under CDSA until age 3 before going under the county school system. If she qualifies for developmental classroom on her IEP at that time, then the county will pay her tuition at CLC. I'm not sure if I can expect that she would qualify for that though.

Tuesday, April 5, 2011


Sweets has her appointment next week to get fitted for the orthotics, so that ball is rolling. Sweets made a big jump in abilities around 18-19 months, but now is pretty stable again. I can't say she really has many more words than she did 3 months ago, and she isn't really saying them any better than she was. The only notable addition to her vocabulary is "pee pee", though she will attempt to repeat certain sounds and words with prompting. She does have some more consonants - her newest is the "F" sound. She has at least 40 signs though and picks them up more easily and uses them in context, and another 10 or so that she is trying. She will sometimes combine two signs, such as DRINK MILK, to tell us what she wants. With prompting, she will say the first sound of a word with the sign ("duh" for done, "muh" for more or milk, etc). She will sometimes look right at you and babble something, giving you the impression that she thinks she is telling you something specific. She is doing pretty well at identifying body parts now (or at least face parts). She can follow 2 step directions. She had an OT eval because she can't do the shape sorter or chunky puzzles, but she can do the piggy bank just fine, so they concluded that it is more of a spacial reasoning issue than an OT issue.

Over the weekend, I happened to be at a party with a pediatric neurologist from UNC and we talked some about Sweets. Of course, Sweets wasn't there, and she didn't see her clinically, but she gave me some things that I might want to look into based on my description. One was developmental coordination disorder. I looked that up and I'm not so sure she is *that* uncoordinated, but the doc said that it often presents with apraxia of speech as well. I looked up apraxia of speech and that sounds more like Sweets to me. It's hard to really know anything just from looking on the internet though. I asked Sweets' speech therapist what she thought about apraxia, and she said it is certainly a possibility for Sweets but that she wouldn't feel comfortable diagnosing apraxia at this age and would wait until she was 3. On the internet (again...) I have read several accounts of 2 year olds diagnosed with this though. I emailed the person who did our Duke speech eval about this and she said that they can test for it at 2. I would like to find someone local who is experienced with evaluating for this. It doesn't have to be at Duke, if there is someone else more suitable.

Her 2 year WCC is coming up this month, but I didn't know if I should ask the sub doc about this since she doesn't really know Sweets. Our regular ped will be out on maternity leave, but I am emailing her about it now.

Wednesday, March 16, 2011


I have been thinking for a few months that Sweets may potty train pretty soon. She signs CHANGE when she wants you to change her diaper, or will even go fetch a clean diaper and bring it to you. She also signs DIAPER and POTTY. She has been going for long stretches between wet diapers, and even wakes up dry from nights and naps more and more fequently. Munchkin potty trained right around this age too - she was in unders full-time during the day the week of her 2nd birthday. Sweets will turn two in 6 weeks.

When I first mentioned to my husband that I thought Sweets might be ready to potty train soon, he was pretty skeptical. He said "She's late doing everything else, I don't know what makes you think she's going to potty train." I just took the baby potty out from storage and showed it to her. Some time later, we were talking about Sweets' delays, and my husband said that he feared that we would start to expect less from her, and that she would therefore do less. I said, you mean like potty training? After that he was 100% supportive of potty training!

So I brought the baby potty into the living room and we have been leaving her naked from the waist down at home more often. She has been sitting on the potty at diaper changes, but she hasn't "done" anything in it yet. That is up until last night!

She was in the bath and started signing POTTY and frantically making noises - "Mmmmh! Mmmmh!" I didn't want her to potty in the bath, so I took her out and dried her off and sat her on the potty. She sat, but didn't go. When she stood up, she held her knees together and grabbed her crotch and made the frantic "Mmmmh! Mmmmh!" noises again. Then she sat and stood up and repeated the noises. This cycle went on for about 20 minutes interspersed with some playing. It was like she knew she had to go, but she didn't really know what to do about it and was trying to hold it in. Eventually, she got so frantic that I sat her on the potty and played "If You're Happy And You Know It" with her to occupy her hands and try to keep her still. And when she got up, there was a big poop in the potty!

We worry about her cognitive abilities, because she still doesn't succeed at the shape sorter or simple puzzles. But she can communicate many things through signing, which shows us that she understands language and remembers the signs and knows how to use them. So maybe she will be able to potty train just fine, despite her other delays!

Monday, March 14, 2011

orthotics and more, updates

We just had another PT eval and Sweets tested at 20 months for Stationary (37%), 17 months for Locomotion (5%) and 18 months for Manipulation (16%). Her overall gross motor is 10%. Her PT said that she thinks that the type of test that was used judges her more harshly than where she really is though.

Her balance is quite poor though, and she falls frequently. The PT has recommended that we have her fit for orthotics for her feet because she pronates when she walks - turns her feet to the edge, which affects her balance. The orthotics would fit in her shoe and would prevent her from rolling her feet. The PT thinks that we will probably get Sure Steps, but the orthotist will make the final call as to what kind would be best.

Sweets also had an OT eval last week because our coordinator saw that she wasn't able to do the shape sorter when she observed a recent developmental therapy session. In the OT eval, Sweets was able to pick up pennies off the floor just fine and put them in the slot in a piggy bank with either hand. The assessment showed that her problem is not really with her fine motor skills as much as with her cognitive skills. She doesn't perform the shape sorter or puzzle well because she doesn't know where the object should go, not because her hands can't manipulate it properly. So, she doesn't need OT therapy, and will just continue with the developmental therapy with a new goal of working on problem solving toys and helping her persist to her level of abilities without giving up.

Our speech visits are going up from two 30-minute sessions per week to two 45-minute sessions. It costs us the same either way, so that's nice.

We have been dealing with a conflict regarding the billing for the therapies. We started 9 months ago and this is the first time we've gotten a bill for anything, and we really had to harrass them for it. But when I got it, it was not the amount that I expected, it was about double. I called them up and told them they did my bill wrong, and they said that I was the one who was wrong. Both therapy agencies did it the same way, so I was thinking that they must be right and I've been wrong this whole time about how much this was going to cost us. I complained to my early intervention coordinator and after 2 weeks they got back to me and told me I was right and the agencies were wrong and they were going to make sure they fixed it for me. So that is nice. I wonder how many people they are messing up the bills on that don't even realize. They were basically double billing my insurance and the state for the same amount, so that they were collecting about 1.5 times what they should.

We are going to run out of insurance-covered therapy visits. We only get 75 per year (increased over 50 last year because we upped our insurance option) and we are using 3 per week now. She actually gets 4 per week - 2 speech, 1 PT, 1 developmental - but the developmental is free for us. So we are going to go off the insurance for a while and just pay out of pocket so that we don't use up all of our visits right away. Right now we are still on a 40% sliding scale rate, but we think that will go up next time they re-evaluate us in June, so we figure we should pay the out-of-pocket now rather than later.

We are still looking into the developmental preschool for her, but we are finding that their therapists aren't on our insurance, so that is a complication. They say that we CAN use our own therapists, but they really think it's better if we use theirs.

Friday, February 25, 2011

Billing Troubles

I have been talking to the PT and SLP billing people this week. This is the first that I've heard from them about my bills for services since we've been in CDSA since last June. We have been asking for bills for some time and didn't want to get surprised. They are now telling me that the amounts that I understood that I have to pay are incorrect, and that I have to pay more.

My understanding was this: The provider would send the bill to insurance first, my insurance would pay and then I would have a copay. Then, based on my sliding scale, CDSA would pay a % of that copay and I would pay my %. In 2010, my copay was $25 and my sliding scale was 40%, so my understanding was that I would be responsible for $10 per session. In 2011, we upgraded our insurance to the more expensive plan (specifically because of these therapies) and our copay is now $20, so my understanding was that my copay for this year would be $8 per session.

The therapy groups say this is incorrect, and I am being charged $19.55 per SLP visit and $15 something for PT (I haven't seen the PT bill yet). They are telling me that they bill to insurance first, then when the BCBS payment comes in they bill the *remainder* to CDSA (not the BCBS copay, but the total amount minus the BCBS payment), and then CDSA determines their allowable and pays their % and I pay my %.

The actual breakdown of charges/payments on my SLP bill (for a 2010 session) are:
Charge from provider $100
BCBS payment $19.37
CDSA payment $29.33
Family owes $19.55
Write off $31.75

My interpretations are:
Total BCBS allowable $44.47
Total CDSA allowable $48.88 (I owe 40% of this)
Total collected by provider $68.25

My questions:

1) What is the actual way that my share is computed, and why is it different from what I thought? This was apparently not adequately explained to me in the beginning.

2) How can the provider collect more than the BCBS contracted allowable rate after billing through insurance? BCBS pays them based on the allowable charges, and I would think they are not allowed to try to collect the balance (besides the copay) after filing it through insurance. It seems to me that by billing BCBS, they are agreeing to the BCBS allowable amount, yet somehow through this arrangement they are able to collect 1.5 times the BCBS allowable amount. If I was not working with CDSA, they would not be able to collect more than the allowable rate from me. If my CDSA sliding scale rate was 60% instead of 40%, would I be asked to pay $29, instead of the lower BCBS copay? That makes no sense.

3) What is the CDSA allowable based on? Is it affected at all by how much my insurance pays? Will my amount owed per session actually change at all for 2011 due to my change in insurance level? BCBS is paying an additional $5 to the provider now (lowering my "copay" from $25 from $20), but will this just end up being another $5 for the provider? Will it just decrease my actual payment by $2 (40%)?

4) If I was not going through insurance at all, what would my payment be through CDSA? If I have to pay $20 for the session, and my BCBS copay would be $20 anyway, what is the benefit of my going through both CDSA and insurance? I might as well just go through my insurance alone and pay the $20, or go through CDSA alone. In that case, I wouldn't have to worry about whether the providers are on my insurance or not (such as the CLC therapists), or about running out of visits with my insurance.

5) Why must it take so long to discover how much I actually owe? We have been with CDSA for 9 months, and I am just now starting to see bills and discovering that my bill is double what I expected this whole time.

Tuesday, February 22, 2011


I visited CLC yesterday, the inclusive daycare that our CDSA coordinator suggested we look into. Overall it seemed fine. I wouldn't say it wowed me, but it is a 5 star center. It's in an older building that wasn't built to be a daycare. The windows are pretty high, so the kids can't see outside. The playground is nice enough with a slide with a ramp and steps, and a tricycle path. The director seemed very knowledgeable about special needs, and seemed to have a very nice relationship with the kids and staff. They prefer that we use their therapists, but we aren't sure if they are covered by our insurance. I asked about cloth diapers, and she said they haven't had a kid in cloth since 1994! But she said she would look up the requirements and she was sure we could work it out. She also said it would be possible to start Sweets for 3 days per week when she turns two, and then switch her full-time once Munchkin starts kindergarten. That way we could secure a spot before the August rush, and not have to send Munchkin to the home daycare without Sweets.

In other news, I thought we were going to have the OT eval yesterday afternoon, but it turned out to just be paperwork. The coordinator seemed really flaky, and I felt like I had to be on top of everything. We were having a meeting about OT, but she forgot to even have me sign the OT papers until I asked. She didn't get anywhere with getting the speech therapist to agree to 1 hour sessions, but we might get two 45 min sessions at least.

Friday, February 18, 2011

A long chat

Yesterday I had a long chat with our CDSA coordinator.

1- We originally asked for one 60 minute speech session per week, but the speech therapist said they only do up to 45 min sessions. Instead, she suggested we could do two 30 min sessions per week to get the full 60 mins. This was approved by CDSA and is what we have been doing. Unfortunately, it means we have to pay double the copay, one for each visit. Apparantly, it also means CDSA has to pay double. Our coordinator wanted to switch back to once per week. I explained to her that I had asked the speech therapist a few weeks ago if she thought we should move to once per week, but her opinion was that she thinks Sweets really needed the full 60 minutes per week. I don't want to give her less therapy just because of money if her therapist thinks she really needs more. In the end, the coordinator agreed that we would do one of two things. A- Get the therapist to do one 60 minute session per week, even though she says they don't do that. B- If we are going to do two sessions per week, make them 45 min sessions, since it costs the same to us either way. So, either way, we'll be getting more therapy for our dollar.

2- The coordinator wanted to know what the PT is working on with Sweets, because she thought that Sweets had met her PT goals. We talked some about her PT goals, such as #7 - "Will have advanced motor skills so that she can go across uneven surfaces and eventually be able to run" which I don't think she's met. I know that the PT takes her outside to walk on the grass (uneven surfaces) and that they also work on steps. This week, the PT said that they worked on the ladder to the slide, and that Sweets should be able to climb up and help pull herself up with her arms, but that she isn't doing it. The PT and I have also noted that Sweets can walk well, but that she is still unsteady and falls down a lot. I wonder if she has balance issues, or if she is just over-confident right now. The coordinator asked some questions about sensory issues because that can lead to balance problems, but I haven't noticed any sensory issues.

3- The coordinator sat in on the DT session yesterday. She noticed that Sweets is interested in the shape sorter, but is not really able to do it. She recommeded an OT eval. I didn't really think fine motor was an issue for her, but I don't mind having an eval to check it out. We scheduled it for Monday, since I'll be home with the kids for Presidents Day.

4- We also talked about whether the home daycare environment is going to continue to be the best option for Sweets. Right now, except for Munchkin 2 days per week (and Munchkin will be in kindergarten starting this summer), Sweets is the oldest kid there. The other two babies are 10 and 18 months younger than Sweets. The boy who was 6 months older left 4 months ago, leaving Sweets without a real peer role model. Particularly because of her delays, it would be good for her to see other kids model age-appropriate behaviors. The coordinator believes that now that Sweets is getting older and is walking, that the balance may be ready to tip from the benefits of the small group home care (which is great for an infant) to the social interactions with peers. I think that I agree with this.

My original thought was that we could send her to TLS, where Munchkin goes, but the coordinator suggested we look into another center, CLC. CLC is an integrated center for kids with special needs and typical children. I am familiar with this concept because Munchkin was at PK as an infant (where we met our home daycare provider), which was the same way. They try to keep a 50/50 balance between kids with an IFSP/IEP and without. They have a therapy room and their own therapists on staff. This center also has a contract with the public schools so that if Sweets qualifies for a developmental classroom (once she is 3) then the public schools would pay her tuition at this center during the school year and we would only have to pay for summers. They have two classrooms there with spots for 12 kids in each, with one lead teacher and two assistant teachers per class, so nice ratios too. CLC goes age 2-5, so we could theoretically move Sweets in 2 months at her birthday if we wanted to. It seems most practical though, to start her there when Munchkin starts kindergarten, esp because Munchkin would still be at our home daycare 2 days per week until then (she doesn't have a full-time slot at TLS). If Munchkin gets into year-round school, it would be very convenient, because CLC is right next door and even shares a parking lot with that school! I will be taking the tour at CLC on Monday, since I have off for Presidents Day. I didn't even know about this place until yesterday, but it sounds really good so far!

Tuesday, February 8, 2011

New signs

Sweets has learned some really useful signs this week: HELP and HURT. She has actually been doing HELP for a little while now, but we just figured out what it meant. She clasps her hands together in front of her and then moves them up and down repeatedly. But now we have figured out that it's her way of signing HELP, and that is a really useful sign! She uses it all the time now! She also learned HURT this weekend. She fell down and got hurt on Friday night and I showed her the sign. Then when she fell down on Saturday, she used the sign to show me! It was awesome (the signing, not the hurting of course!). She also learned to sign BERRY this weekend, though she signed it better on Saturday morning than she did on Sunday and Monday. She is starting to pick up signs really quickly now, and it's so nice for her to be able to tell me what she's thinking! On Monday she signed CHANGE to me to tell me she wanted a new diaper. I layed her down on the hardwood floor to change her, and she signed COLD to tell me the floor was cold! It's just so nice to be able to get this level of communication from her!

Friday, January 28, 2011

21 months - 10 words, 25 signs

We count 10 words that Sweets can "say" now at 21 months:

Baby = "Bee Bee"
Bye Bye = "Ba Ba"
Cheese = "Gzzzh"
Dada = "DaDa"
Done = "Duh"
Hi = "Ha"
Mama = "MaMa"
Night Night = "Ni Ni"
Uh-Oh = "Oh Ah"
Up = "Buh"

She has 25 signs now that we count:


new coordinator

Today I met our new CDSA coordinator. Our old one moved to a different county. She seemed nice. I felt like she hadn't read Sweets' file though. I had to tell her our whole history. She didn't know that Sweets got other therapies, or that we needed a new developmental therapist. She asked if we thought we even needed to keep getting developmental therapy, and I said that we wanted to keep it, and at least it can't hurt. So now she's on top of getting us a new therapist and I should hear from her Monday about that. She said she wanted to have Sweets re-evaluated though to see if she still needed it. She offered that they could do the eval after her 2nd birthday, because the expectations go up at that point, making it more likely that she would test as delayed. I think that she would test as delayed anyway, but I guess that's a good idea.

I also asked about moving speech therapy to once a week for 45 minutes, instead of twice a week for 30 minues. We have to pay copays each time, and we only get 75 therapies per year on our insurance, so we don't want to use them all up now. But the therapist said that she thinks we should stick to 2x30 minutes because she thinks Sweets needs the full 60 minutes. So, we'll do that. I don't want to be cheap about it, if that's what she needs.

Wednesday, January 26, 2011

New therapist... again

I was happy that we were getting a new developmental therapist because I wasn't crazy about the old one. We saw the new therapist last week for the first time and I liked her. We had the session at our house because it was MLK day and we were off work, and I think it worked nicely to have it at home. So, now I just got an email from the new therapist that she found another job with another agency. So now we have to find *another* new therapist. And meanwhile, with all the confusion, Sweets has only had developmental therapy twice in the past two months. :(

Friday, January 14, 2011

No diagnosis

My Sweets has global delays in motor, speech, and maybe cognitive. It's a little hard to measure cognitive without speech. The doc said that if she was just delayed in one thing, they wouldn't worry about it because kids tend to learn one thing at a time. But since she has global delays, that is more concerning. She had her first steps and first words both around 18 months though, and has been really doing a lot of new things since then, so we are seeing a lot of progress now. The big question then, is whether there is something medical going on, or whether she is "just a late bloomer" as so many people like to tell me.

We've had a bunch of tests, including a karyotype (test for things like Down Syndrome), blood tests for muscular dystrophy and thyroid problems, evals for autism and neurology, and everything has tested okay so far. The most recent test was a DNA microarray which tests for small scale DNA copy number variances, and that just came back normal as well. So, we have no answers, but since everything is testing negative, and she is starting to do a lot of new things, we are now on a watchful waiting program and not testing anymore for now. The docs say that even if she were diagnosed with something, we are already plugged in to the early intervention therapies that we would need to get anyway, so the diagnosis isn't as important for now. But a diagnosis could be important later, in order for her to keep getting services once she ages out of early intervention. Or, she could be just a late bloomer and she will catch up by then anyway.

new developmental therapist

We are getting a new developmental therapist next week. We talked to the agency, and the boss said that she had received several similar complaints about this therapist and that she was actually going to reassign all of her clients to other therapists and let her go. So I guess I wasn't the only one who felt that way. The boss said that she didn't want us to feel just okay about our therapist, she wanted us to really love our therapists and think they are great. And I do think our other two therapists are really good, it was just this one that I didn't feel super warm about. So, we get a new one next week!

In other news, the speech therapy is going really well! I'm very happy with the therapist now. We are seeing a lot of new signs and sounds since we started. The physical therapist sees a lot of progress and says she thinks Sweets will graduate from PT some time this spring or at least before her yearly eval in June.