Our kids' diagnosis

[Brandi]

I'm wondering if we can maybe make this a sticky so we can reference it later.

Post your little one's dianosis.

[Brandi]

Heather has Tuberous Sclerosis (TS or TSC so as not to confuse it with Tourettes Syndrome). TS is a genetic disorder where one of two genes doesn't produce the normal protein it should. This protein fights off tumors, so Heather is much more likely to get tumors in any of her organs. The main ones normally affected are eyes, skin, heart, brain, and kidneys. Heather has tumors in her eyes, heart, brain, and skin at this time. She is doing quite well though. She has Infantile Spasms (IS) which she takes Vigabatrin for.

[Mary]

Fortunately, Joe only has poor muscle tone and was a preemie. I can't imagine how hard it must be for families with more severe diagnosis. I know how hard it is for us at times and we are very fortunate.

Mary

[Jillsers]

Kayleigh has autism and sensory integration disorder. She has significant language delays. She's 2½ and only now has some words, but she can't actually communicate with us. Her receptive language is improving dramatically, though). She also has major issues with food and texture, as well as all the social problems that characterize autism. She's currently in speech therapy, occupational therapy, behavioral therapy, and goes to school 5 days a week.

Lincoln (7 months) has kidney disease. His right kidney is multicystic and non-functioning, and is now starting to shrink down and will hopefully be reabsorbed by his body without getting infected. His left kidney has severe hydronephrosis ("stretching" or dilation of the inside or collecting part of the kidney) and he actually has to have surgery to correct it during the first week of August. We discovered this congential birth defect during our big u/s and his survival has been questionable ever since (we didn't think he would make it to birth, even). We're hoping that this surgery will fix this problem, though he will always have issues, since he only has 1 functional kidney.

[stass]

Saxon was given a general diagnosis of Early Childhood Developmentally Delayed. They said we could pay for further testing for Autism but the treatment would have been the same (same school and classroom he is going to now). If he does have autism at all it is very mild. WE didn't find it necessary to get tested. He is doing great whatever he has. He loves school and is working on his social skills. I am confident that he will be in a regular classroom by the time kIndergarten is here.

[Jillian]

Janelle had low muscle tone (only in her upper body) and hand eye co-ordination problems...which with almost a year with no therapy (which she was only getting like once every 2 months and then we would do stuff at home in between) may be resurfacing again...she also has SEVERE reflux, and she will need surgery for this, unless it becomes an emergency though they won't do the surgery till she is 35 lbs, she is 21lbs right now. She has also been diagnosed failure to thrive, and has some other issues that is causing us to get her tested for cerebral palsy this fall...though if she has it it will be very minor. All in all, she is healthy and happy, she takes zantac and prevacid each twice a day for the reflux and tums if needed. She is advanced in quite a few areas.

Kincaid has had 6 seizures now all for un-known reasons. As I said in a previous thread we are still waiting for EI to evaluate him, though the neurologist is pretty certain his diagnosis will be sid and dyspraxia, probably turning into a aspergers diagnosis in the future, though we are also looking at possible autism. We also just found out at his 15 month appointment that some of his organs are not in the right place, not a big deal now, but if he is in a car accident he is more likely to have injuries to them cause they aren't as protected and if they don't move on their own he won't be allowed to play contact sports.

[Jillian]

Ohh, at this point kincaid is according to our ped about 70% or more delayed in expressive communcation, he has no words or signs, he does not wave or point.

[Brandi]

So Jillian, he has had 6 seizures, but is not on a seizure med? Does dyspraxia cause seizures? Aspergers and SID don't do they? THat's weird. Not that I'm the expert on seizures, but I thought that they would look more into putting him on some AED (anti-epileptic drug). Hmmm.....

[Jillian]

Well since they are rather spread out...the thoughts are that he had 2 in a row in january, and again 2 in a row in march, then 2 12 hours apart from eachother in may...they aren't causing any harm and we don't know where they are coming from...so we don't really want to treat them since the wrong drug could cause more seizures...we really need to know what kind of seizures he is having to treat them, and to figure that out he needs to have one during an EEG or they need to actually cause brain damage that can be picked up on an eeg...

Many autistic kids have unexplained seizures or seizure like activity in their brains according to my neurologist...also according to the neurologist aspergers and dyspraxia are both on the autism spectrum, so I guess it is possible that unexplained seizures could go along with them as well, but I'm really not sure.

[Brandi]

Thanks Jillian for filling me in. I guess it makes total sense that autism and seizures go together. How do they know that the seizures aren't causing any damage? I'm very curious about seizures because Heather has them - sorry if I'm asking too many questions. Hey - I just checked your journal to see how old Kincaid was and found that he and Carter have the same birthday, just 2 years apart!

[Kate]

Cameron has developmental delays. His speech was extremely delayed (he was at an 18 month mark when he was 3) and he still walks on his toes. Also, his behavior was horrible. He has a lot of markers for ADHD.

Right now he is going to preschool 4 days a week and is getting speech and physical therapy.

[Bonnie]

Courtney was born with a cleft palate and microtia of the right ear. Microtia is when the ear doesn't form correctly, so her right ear is small and has no opening. Her palate was repaired at 10 months, her ear will be when she is 6. Her more troubling diagnosis is microcephaly, which just means small head. Her head is not even on the growth chart and grows very slow. She is petite, so she looks pretty proportionate. The microcephaly could mean nothing, could mean minor delays, or could have meant major delays, but she is developing mostly on track. She is delayed in walking and has no words yet, but does understand. She will be going to physical therapy to help with walking. She just doesn't have any balance now, which could be due to her ears, but we don't know. Speech could be because of her palate. She'll have speech therapy regularly starting next month.

[luckiestgirl]

Hello,
I have a 13 yr old son with ADHD that is controlled by medication.

I also have a 5 yr old that has SID (sensory integration disorder) & FOD (Fatty Acid Oxidation Disorder). The FOD is a rare genetic disorder that is life threatening. She has low muscle tone, failure to thrive (Very tiny for her age), microencephaly, and has had issues with a fatty liver. She was put on some medication & she has really sprouted in her growth & her fatty liver is gone. Most kids with this disorder have seizures, bouts with hypoglycemia, etc but we have never had major issues. Hopefully due to catching it in time!!! The SID is quite bad & she requires therapy several times a day (brushing, joint compression, deep muscle massage, etc.) She is tactile sensitive, the auditory doesn't seem to bother her. On bad days we can't even have the lights on in our house.

So...for those of you with this same issue...SID...does your child have special ed in school or do you have something in place to deal with your child's disorder? Meagan starts Kindergarten this year & they have put it all day every day & I am a bit concerned that she won't be able to deal with it or may stress throughout the day & I would like her to have a little extra help available if needed.

Thanks!!!

[Brandi]

Welcome luckiestgirl! Boy - it sounds like you have your hands full. We aren't dealing with SID - yet at least - so I can't answer any of your questions. Just wanted to say GOOD LUCK with school!

[Nadine]

I only realized this forum exist by chance.

Yumi is seven years old and diagnosed with ADHD. He is treated with meds which helps a lot. But it still is very difficult to cope with at times. He was also diagnosed with SID. He goes to gym lessons, special lessons to help him cope with school etc and we exercise with him on a daily basis.

Shoham is 3 years old. We think she might be headed in the same direction but we don't know for sure.

[Janice]

Spencer was born at 25 weeks, but, thankfully, hasn't exhibited any major issues,so far. The biggest problem we've dealt with is his severe reflux, for which he's on 2 medications - Prevacid and Pepcid. He does suffer from low muscle tone, but according to his first Special Care Infant Follow-up appointment in July, it wasn't "abnormally" low. However, that diagnosis could change. Since he was born so early and so small, he's being monitored for signs of cerebral palsy until he's about 2 years old.

[JustJen]

Austin still does not have a clear diagnosis.
They thought Growth Hormone Deficiency when he was younger, but more detail studies have found that isn't the case. Now our pediatrician is thinking Fragile X Syndrome, but in its mildest form.
He has been in Early Intervention since he was 6 months old. He didn't walk until 18 months old and only after 6 months of daily physical therapy and the use of a theraputic walker.
He is still doing occupational therapy, speech therapy and resource room (extra school help).
He has a very distended abdomen due to his hypotonia (poor muscle tone). That is also the explaination for his speech problems.
He is really tiny for his age. The smallest boy or girl in his entire grade.
When he was 2-3 they thought he also had SID. But has outgrown his sensory issues in the last few years.
He is very immature for his age. Definitely a young 8.
Although he makes of for everything with his personality. He's a very bubbly outgoing goofy kid. He has tons of friends and just loves school. He seems to just take every challenge in stride which we are so thankful for.

[Jillian]

After Janelle's 3 year appointment on Thursday of last week we were given a preliminary diagnosis of very mild cerebral palsy, in general it doesn't effect her life much at all, that may change when she has to start writing and stuff in school since it seems to be her upper body that is most effected. She has minor low tone and some other issues. We were also told that she is officially a candidate for growth hormones at 34 inches and 21lbs at 3 years old, but we really don't want to go that route and are going to wait till she is much older before we even consider it again. She has not gotten any taller, and her head has not grown in 6 months, She has worn the same size shoe for 14 months, and she has only gained 3 ounces in 6 months...and that could be the difference in clothes or scales.

[Jillian]

Kincaid had 2 more seizures last week, and they left his right arm paralyzed for about 30 minutes after the seizure is done. So we are starting to try various anti-seizure medications at his October appointment. We want to finish his EI evaluations (october 17th) first so that the side effects of the drugs do not effect his evaluation.

Janelle officially stopped growing in height 6 months ago...weight too. Her feet have been the same exact size for 15 months now. Then after a full evaluation they discovered that her airways, jawbones, hands, and feet are small in proportion to the rest of her, making them assume that these all completely stopped growing 9-12 months ago. We have a solid diagnosis after a complete sleep study, evaluation by a growth specialisy, neuropsychologist, sleep specialist, pediatric psychiatrist and a million other doctors that she has severe sleep apnea and ADD (not ADHD) as well as growth restriction. Sleep apnea can cause you to stop growing, and it is the leading known cause of ADD and ADHD, so her tonsils are being removed on the Friday. In 6 months we have to go back for another sleep study and full evaluation...we are praying she grows between now and then...the ADD we can deal with. After this last evaluation we were told that there is a 5-10% chance that she might be done growing...as in 34 inches is as tall as she will ever be...so that is scary, but 5-10 is really low so we are hoping we get back into that 4'6" range we've been told for the past year...4'6 while very short is definitely manageable!

Ohh, and she has the intelligence of a normal 5 year old, at least. Part of her evaluation was an IQ test...what they did was do tests untill she got 5 questions wrong in a row starting with the 2 year old test and going on...she never got a single question wrong and completed the 5 year old test, but by that point she was very very tired of doing testing andt he 6 year old test takes a lot more reading than I think she can do (she can read really easy books, dick and jane, hop on pop, etc) so we didn't even start the 6 year test.

ETA if the tonsilectomy doesn't completely fix her sleep apnea she will get a c-pap machine like adults with sleep apnea have. Growth hormones are only released during the deepest stage of sleep, which you rarely or never get to if you have sleep apnea, so we are really really hoping this is what is going on.

[Bonnie]

Wow, Jillian, that is a lot going on for you guys. It is good to hear about the intelligence testing though. She sounds like quite a smart girl. I hope you are doing well with all you have on your plate right now.

[Jillian]

Her tonsilectomy went great, she is doing so well with it. She is eating already (just fruit, but still eating) and talking...she has a slight fever today, but we were told she could, it's a sign that her body is working to heal the wounds...her face is swollen today too, she looks like a chipmunk...but a cute chipmunk.

And there is also a huge difference in her sleep already, we can't hear her breath at night at all anymore...not only is she not snoring, but she is breathing through her nose (something she has never done before) and it's so so quiet!

[AllyRae]

Brandon has been diagnosed with Sensory Integration Dysfunction and extreme expressive language delays/regression.

He was diagnosed earlier this year and has come very far with his OT--he is actually graduating from it this week or next. As far as speech goes, he has the understanding above a 36 month level, but at 18 months old, his speech was at a 5 month level. Now at 22 months, due to a lot of hard work, some unconventional approaches (including teaching him to speak in ASL), and OT, he has 15 verbal words and over 70 signs (including full sentences in sign). He also signs and speaks simulateously. :)

[Jillian]

Kincaid started on Trileptal today because he had 3 "episodes" (meaning 6 seizures) in under 24 hours. They gave him a pretty big dose (6cc) today, and then we will give him 1cc twice a day for 5 days, then 2cc for 5 days, then 3cc for at least a year (assuming this dose works for him and such).

[Stacy]

:justahug: Jillian
Wow, that is alot of stuff to deal with.
I am glad to hear that Janelle already seems to be improving. I hope that having her tonsils out will result in many positive changes for her.
:eek: about Kincaid and the seizures. I hope the meds help.

[Shel]

:bighug: Some of you gals have your hands full.



I just have Jacob, my almost 10 year old ADD (wtth some ADHD tendencies) So far he's doing great with some mineral supplements and dietary change, plus more activities to keep him busy. I count myself very lucky. I felt weird posting in here before, but seeing how many of you are getting ADD and ADHD diagnosis, I thought maybe I'd pop in here to offer a little support, or answer what questions I can. I have a ton of research (3 file folders full!)

[Brandi]

Jillian - so glad that the tonsilectomy went well! That's awesome that you are seeing improvements already! Praying that this will be a miracle for her and she will start sleeping and growing! Poor Kincaid. Are you aware of side effects that he could have with that medication? I know all the AEDs (anti-epileptic drugs) can have pretty bad side effects on kids. Hopefully he won't have any, but you might want to watch to make sure he's still developing. I don't know a whole lot about Trileptal, but I do know a lot of people with TS on the TSAlliance list take it and it seems to work really good for them. I hope it works great for him too and that he doesn't have any more seizures!

AllyRae - How awesome that Brandon is progressing!

[Bonnie]

Jillian, glad the tonsillectomy went well. I hope the meds help Kincaid. AllyRae, that is great how far Brandon has come.

[Jillian]

Jillian - so glad that the tonsilectomy went well! That's awesome that you are seeing improvements already! Praying that this will be a miracle for her and she will start sleeping and growing! Poor Kincaid. Are you aware of side effects that he could have with that medication? I know all the AEDs (anti-epileptic drugs) can have pretty bad side effects on kids. Hopefully he won't have any, but you might want to watch to make sure he's still developing. I don't know a whole lot about Trileptal, but I do know a lot of people with TS on the TSAlliance list take it and it seems to work really good for them. I hope it works great for him too and that he doesn't have any more seizures!

That's are hope too...she already is sleeping so much better (well, except last night, she had 7 nightmares between 1 am and 7 am I'm so exhausted today), so now we just hope that this is really the reason she has stopped growing...please let this be the reason, I am NOT ready to deal with the idea of a 3' adult height.

The drug we have Kincaid on is pretty new I guess. We are really hoping it works cause it is what the neurologist considers the safest, there are no possibilities of it harming other body systems, really the only side effect is tiredness/confusion. And trust me, he is tired, my poor baby, but, he hasn't had any seizures since that 6cc dose, so that is great, and he could just be so exhausted from having 6 seizures yeasterday. But he slept from 9pm last night till I woke him up at 11am today... I woke him up, put him in clothes and took him to the mall...he slept all the way there, and slept in the stroller at the mall, slept through lunch, slept while Janelle played (and I even moved him to my arms then) in the play area, slept through getting his hair cut...then put him back in the car to pick daddy up from work at 4:30 and slept all the way to his office...he woke up then, stayed awake till we got home at 8...played for an hour, and went to bed at 9. But still, no seizures, so that is good...I really was not prepared mentally for yeasterday, 6 seizures was way too much for *me* to handle, so I feel really bad for him.

[Jillian]

I just have Jacob, my almost 10 year old ADD (wtth some ADHD tendencies) So far he's doing great with some mineral supplements and dietary change, plus more activities to keep him busy. I count myself very lucky. I felt weird posting in here before, but seeing how many of you are getting ADD and ADHD diagnosis, I thought maybe I'd pop in here to offer a little support, or answer what questions I can. I have a ton of research (3 file folders full!)

Your new sig is funny.

So what kind of diet/supplements do you have Jacob on? Janelle was diagnosed with ADD (definitely not ADHD...she is not hyperactive at ALL) last month...she will be retested in 6 months (supposedly sleep apnea can cause ADD...and tonsilectomies usually get rid of sleep apnea, so we are hoping this is the case) but if she still has it then they are talking about medications, and I'd like to avoid them if possible (but if she needs them we will definitely use them!).

[Brandi]

Hey Jillian - are you still around? How are your kids doing? Just thinking about you and wondering! Hope all is well.

[stass]

Hi Brandi,

She hasn't been online here since Feb. I looked her up on a different board because she was going to move to my town and Jannelle and or Kincaid probably go to Saxon's school. I haven't run into her there I think they are in the am class.

Anyway for an update, Saxon was reevaluated and given the diagnosis of Autism Spectrum Disorder. A behavioral pediatrician also evaluated and said he was close to PDD_NOS. (Pervasive Developmental Disorder - Not Otherwise Specified) Whatever but he is doing great and going into a new classroom in the fall that we are excited about.

[AmyP]

I guess I should put Sarah here. She is delayed in gross motor skills, speech (not sure how much in receptive and expressive), fine motor skills, self-help, and basically everything except social skills. She gets PT twice a month, OT three times a month, and special instruction twice a month. No idea the reason for any of these delays. So far her therapists and pediatrician seem to think she just has her own agenda.

[Brandi]

Thanks Stacey. I had a hunch that was the case, but wasn't sure. I hope he's doing well. I have a special interest in seizures with Heather, and last I knew, Kincaid had several before they tried a new medication. Well, if you hear anything, let us know.

It's good to hear that Saxon is doing so well. And wonderful that he likes school!

Amy - It's amazing how delayed some kids can be (not that Sarah is hugely delayed), and then they all seem to average out after a few years or so. I think it's great that she's getting therapy! Heather still gets developmental therapy and now speech therapy once a week. We actually have the two therapists coming at the same time. It's nice because it doesn't take up as much of our time every week. OH, and she gets OT once a month. I think it's helped her. I'm not sure she's behind anymore, but we continue with it.

[Jillian]

Hey Jillian - are you still around? How are your kids doing? Just thinking about you and wondering! Hope all is well.


:wavey: I haven't been around for awhile, and will probably drop off the face of the earth again soon with all the stuff going on here (Janelle starts pre-school on the 6th, Caid starts back into therapy/EI pre-school on the 7th, Janelle starts ballet on the 12th...and so on...), but I ran into Stass at the mall yeasterday (she was getting flynn's 1 year pictures done and her picture appointment was the one immediatly before ours) so that made me want to check in and see how everyone was.

Kincaid is doing really amazingly well right now, but that is after a very rough month in June and even some of July. He started at the begining of June having seizures that were leaving him completely immobile for hours afterwards, and he would sleep for up to 20 hours after one... We found he weighed 33lbs and upped his dose of trileptal to 8mm, the maximum dose for his age/weight. Then I guess he started slowly losing weight, and he got down to 27lbs, and went toxic on the trileptal, and that sent him into status seizures and he was having one every 3 minutes (we didn't figure out what exactly was going on though till after a week of this cause they were abscene seizures...to us his only symptom was that he was sleeping about 22 hours a day. So we were hospitalized and that's when they found all this out. They gave him diastat to "re-set" him (this is the second time they have done that...) and then we cut the trileptal dose in half and added a second medication, topamax, on. Now he is doing so much better, we saw another language explosion with the topamax (the last one we saw was when he first started the trileptal), which is great, and no seizures that we can tell since we started...we will do another ambulatory eeg in a few months to make sure he is not still having abscene seizures at night.

Ohh, in June we did an ambulatory eeg and discovered (for the first time something showed up on the EEG) that he has frontal lobe based epilepsy.

As for non-seizure wise. We moved to Ann Arbor, a new county, basically because we did not agree with his first evaluation at all...when we finally got his IFSP in the mail we were baffled at the things they said...like that he was advanced in speech (both expressive and receptive), and that he knew all of his colours and body parts (he had this first eval at 15-18 months old (I can't remember without finding the papers) and he still doesn't know his colours/body parts now despite us trying our hardest to teach them to him)...just weird stuff. So we moved to ann arbor (just a 15 minute move) and got him re-evaluated. He qualified for speech and occupational therapy and is also in a pre-school class. He was put at a 14 month level for receptive speech and a 9 month level (with skills scattered through 15 months) for expressive, and a 16 month level cognitively. He also had a 6 month delay in gross motor, which wasn't enough to qualify for physical therapy, but he does participate in some of the PT activities when the PT comes to his pre-school class.

Overall, our biggest issue is his sensory problems.

But, really, he is doing great, he is so adorable, and like I said, he has had a huge verbal explosion just recently...only DH and I can actually understand him since he likes to make up words (like he says DIE for colour and Be-fa for drink) and he has some severe articulation problems, but we can understand him and he is doing great with that... He's also the happiest and cuddliest kid ever, and so so so well behaved, it's amazing!

I think that is everything....


Ohh, Janelle is doing great...she supposedly according to her last sleep study/IQ test (and that will be the last one, it was just the follow up visit) has ADHD and OCD...we aren't sure if we agree with this or not, and she is advanced in every area so she doesn't qualify for therapy and our insurance won't cover any, so we'll just wait and see how she does in school to decide how we want to pursue this.

[stass]

I thought I had posted here but I think Flynn shut the computer off. :rolleyes:

Any way I meant to say how scary that is for you Jillian! I am glad he is doing better! It was so weird to see you that day when we were going to meet other online people right after!

I will likely see you at school on the 5 th for the orientation. If you are going in the am that is. Who is your teacher? Saxon has Laurie S olon. We are very excited! She is supposed to be great with the floortime greenspan techniques! I think this is going to be a big year for him!:woo:

[Brandi]

Jillian - WOW! Scary stuff. This is the type of stuff I read multiple times a day sometimes on my TS list that I'm on for Heather. I could totally understand everything you said and I'm so sorry that you had to go through all of that. Those drugs are scary, but when you can find one that works for your kid, well, that's just plain awesome! I am so excited to hear about the language explosion. That happened for Heather back in March. Since then, she has gained so many new words. I think that in about 5 or 6 months, she went from less than 5 words to about 100 or more words and she's been adding tons every since then too. It's so exciting to hear her talk, when I wasn't sure she ever would. Her speech isn't extremely clear either, but it's getting there. I asked the therapist just the other day if kids ever learn words, but then don't really put them together to make sentences. She said, no, but it might take them some time to get there. That was reassuring. Good luck to both kids in their development! I just love hearing good news.

[Bonnie]

Brandi, that's great news about Heather!

[stass]

That is awesome Brandi!

Bonnie how is Courtney doing? Is she in any intervention? I forget.

and OT (off topic not occupational therapy) What is the weather like there in December and January? DH is looking at orbitz lately. :rolleyes::lol:

[Bonnie]

Courtney is doing very well. Her major issue is her speech delay. She is 2 1/2 and she has very few real words. She seems to understand everything, so that is encouraging. She is trying now to say a lot, but she just doesn't have the consonant sounds. She is still in the early intervention 0-3 program until she turns 3, and has gone to a public preschool program twice a week during the school year since last December. She gets home visits with a teacher and a speech pathologist through that program too. She recently started speech at Children's hospital through their outpatient speech program, and she is doing OK with that too. I think we just have a long road with speech. She is a little awkward w/gross motor, but she walked really late, so I figure she'll get there.

And the weather in Dec./Jan. is usually OK. It can be hit or miss... some days beautiful and sunny.. but not definitely. Still quite mild though.

[AmyP]

I should update on Sarah too.

She started walking in early July and now she walks everywhere. She hadn't figured out how to run yet, but I'm not really concerned about that. She starts a music and movement class through EI on Wednesday (like a Gymboree class, but it's free and more suited to kids with delays). That goes for 12 weeks and then I think they start up another session. She's in the non-walker group this time even though she is walking. Her therapists were concerned that the walking group would have a lot of kids who would run around and trample her.

She's chewing food better, but we still have a long road ahead. She eats spaghetti-o's and cut-up ravioli, but that's the only table food. That's still huge for her, though. She gives herself a sippy cup independently, but won't self-feed otherwise. We're working on getting her to spoon-feed herself, but it's tough. She just isn't interested in doing so.

We did have a little communication break-through on vacation. She would walk up to her booster seat and pat it when she was hungry. Definitely a BIG step for her!

She still isn't talking at all, but she signs "more". We're working on "eat" and "milk". She understands some words and simple sentences. She loves to imitate us, so we're hoping she'll pick up more signs soon.

[Jillian]

I thought I had posted here but I think Flynn shut the computer off. :rolleyes:

Any way I meant to say how scary that is for you Jillian! I am glad he is doing better! It was so weird to see you that day when we were going to meet other online people right after!

I will likely see you at school on the 5 th for the orientation. If you are going in the am that is. Who is your teacher? Saxon has Laurie Solon. We are very excited! She is supposed to be great with the floortime greenspan techniques! I think this is going to be a big year for him!:woo:

Did you get a letter this week saying school isn't starting till the 11th and they will be calling you about a visit the week of the 5th? I'm not sure if it is for everyone or not, Caid is in EI and Janelle is going to head start and we got them, as we speculated before, it seems the school isn't ready yet.

Caid is going to have Tammi again this year...or at least till January when they plan on moving him to ECDD...

[stass]

My letter said school starts for him on the 7th and that he will make up days missed by going on the 8th and 15th. (fridays that he usually has off) Are you doing First Steps or regular preschool?

[Jillian]

He's in Early On right now.

[Kate]

Cameron starts school on Tuesday :woo:

I have seen a huge regression in him during summer vacation, so I am excited to get him bnack in school and on a better schedule and working more on his articulation. Also, his behavior needs the structure of school.

Over the summer we ended up moving for a few different reasons, but one of the main ones is that the last school district really slashed Cameron's services. They cut out PT and ESY. Also, they are going from full day kindergarten to half day. The new school district has full day kindergarten and I am hoping that I can fight and get some of Cameron's services back. Right now he is only getting 30 minutes of speech 2x a week, plus preschool.

[Bonnie]

Kate, is Cameron starting kindergarten, how old is he (forgive my ignorance, please) and how is his speech and how has speech therapy helped?

[Kate]

Cameron is still in preschool. He is going to be five in January.

Before starting school and speech therapy he only used 1-2 words at a time, couldn't count past 5, do his abc's, etc...

After a half a year of preschool with therapy he was using 3-4 word sentances and can now count to 15 (except he only does the odd numbers most of the time), knows most of his colors. We are working on improving his articulation and growing his vocabulary.

Also, he is most likely going to be diagnosed with ADHD when he is older. We have done two different Connor's evaluations and both of them showed him to be highly at risk. We are hoping to try and get that DX this year, before he starts kindergarten in '07.

[Bonnie]

That is a great improvement, and very encouraging to hear how well he's done.

[Brandi]

Kate - that's awesome how far he's come. My question is this. Does he have an IEP? If so, when was it written? Doesn't the school have to legally provide what is stated in the IEP? Also, I think that you should be able to get some kind of therapy over the summer. I know there are rules on summer stuff, but I don't know it all off the top of my head. When you write your IEP, you need to find someone to be an advocate for you. There are places you can call. If you want me to dig up some info on that I can. You also might want to check out Wright's Law online for more information on the legalities of all of this. Good luck at the new school!

[Kate]

Cameron is on an IEP. His first IEP was written in January of '05. We moved to a new town in December of that year. This past Janaury his IEP was re-done. They decided to do a full evaluation again (BTW... now he can't have a full evaluation done until he is in first grade :firemad:, they really screwed me on that one!!) and re-wrote his IEP, dropping the PT and extended school year. I rejected that IEP and we had another team meeting in which they compromised and gave him speech therapy through the summer 1 day a week for 30 minutes.

IEPs need to be reviewed and possibly modified every year. That is how the other school system was able to change Cam's IEP.

Has anyone here hired an IEP advocate? I was looking into them for when his IEP is reviewed in January, but the cost is pretty high ($200 an hour). Was wondering if it would be worth the price if they can guarantee that he will get what we know he needs.

[Bonnie]

Kate, I don't know about an IEP advocate, b/c so far, we have been pleased with our services, etc. But, I think you should definitely check out the resource Brandi posted and whatever else you can find out on your own first, then decide what to do. You are your child's best advocate, b/c you know him and his needs best. I thought they had to do the IEP once per year. So far, we have always had it coincide with Courtney's birthday. I know nothing about what the requirement is, b/c like I said, things have been great for us w/o me needing to do any further research. The speech once a week for 30 minutes strikes me as really wrong. If you have a child w/ a fairly major speech delay, I would think twice a week would be necessary. (not sure Cameron's is "major", I'm just thinking about Courtney and what I would have thought if they only authorized once a week.)

Do you have any ability to get speech (or other) therapy through private insurance? That has been helpful for us. Courtney gets her speech at her early intervention preschool, which has a summer session through July, but we have also been able to get her speech through our medical insurance. It has been tremendously helpful in the short time we've done it.

I would definitely look up all you can on what the school district is required to provide as far as FAPE (Free Appropriate Public Education)... I just feel like you are not getting what you are entitled to.

*ETA: I realized we have not yet had an IEP, but an IFSP, which is what they have before age 3. After age 3, they are with the school district and go to an IEP. Regardless, they are supposed to be updated AT LEAST once a year.

[Shannon]

We just hired an advocate for Parker's services. I am just nervous and don't want to have to worry. I HIGHLY suggest it! She is only $50 an hour and I live in MA (which is pretty expensive :) )

[Jillian]

Today was Kincaid's IEP meeting for changing from his EI class to the ECDD class room. I think ECDD stands for early childhood developmental delay or something like that? Anyway, it was nice...he has done so well speech wise since his IFSP meeting...he's still pretty far behind, but he's improved so MUCH...cognitively hasn't been as big, and sensory issues have gotten worse instead of better. His fine motor skills/hand eye co-ordination has not changed at all, if that stays the same between now and his birthday we will need to do more about those issues. And his gross motor skills are a little bit more behind than they were at the IFSP, but he JUST started getting some PT for them...and he just started ballet class, so perhaps that will help as well.

So, overall, it was a good progress report, he's moving from 2 mornings a week for 1 1/2 hours each to 4 mornings a week for twice as long...and he will eat breakfast and lunch there (hopefully this will get him eating more/gaining weight, as one of his biggest sensory issues is that he likes to just quit eating for weeks at a time.), he's getting more OT and a little less ST now, which is what he seems to need. So really, we are very happy with his IEP.

However he also had a neurologist appointment today and we got the diagnosis of autism...we knew it was coming...it's been mentioned at school quite often, and such, but it was still a difficult thing for me to hear.

Janelle is doing great by the way, don't want to leave her out completely, she had a blast doing all the fun halloween stuff (we did the museum halloween party, and then the library halloween party, main street TOT...that stuff).

[AmyP]

We had Sarah's IFSP followup (same thing as an IEP, more or less) last week.

She's moved up to about a 12-15 month level in most skills. She was around 6-8 months when we had her initial evaluation. And she's totally caught up in gross motor skills. We are increasing PT, though, because she's gotten into a habit of toe walking and she can't get into a sitting position from laying on her back. She's under one year in fine motor skills and expressive speech. Receptive speech is about 14 months, I think.

Anyway, she's getting OT once a week, PT once a week, and SI (special instruction) twice a month.

She's doing pretty well with her OT work. She eats diced fruits mixed with baby cereal, and we've added a little bit of table food finally. She eats spaghetti-o's, cut-up ravioli, and mini-spaghetti and meatballs with the meatballs cut up. My little Italian! We're just slowly increasing textures at the moment. She spoon feeds pretty well. We're working on scooping the food, but she can get the spoon from the bowl to her mouth and back without help. She tries to scoop, but just hasn't figure out how to do it yet. But it's major progress because the sheer thought of spoon feeding herself used to spark a major meltdown!!!

Special Instruction is going well too. We're currently working on communication. Her goal was to communicate three needs to me and she's doing four. She signs "more" consistently, asks to be picked up by grabbing our hands and placing them on her body, she asks for help with toys by handing them to use, and she will give us her coat when she wants to leave somewhere. She also understands to come up to me and give me her arm if I hold up her coat. We're also teaching the parts of the face, but she doesn't understand them yet.

[Kate]

Cameron is being evaluated for OT and PT. We have a team meeting on Nov. 20th and hopefully his IEP will be amended.

He has been doing great with the new school. The only issues we had were with the bus, Sean and I have since decided to drive him to and from school. He was on the bus for an hour on the way into school and it was just to much on the little guy.

Cam's teachers and therapist have been so great. I have gone in a few times to sit with the speech therapist and go over exercises to do at home. She did mention that she has noticed some sensory issues which is the first time that this has come up in his two years in school.

[Connie1222]

Hi everyone, I just re-subbed so here goes:

Jack, who is almost 6, was diagnosed as "high risk" for ADHD & ODD at 4 1/2. Most recently, he was diagnosed as PDD NOS by a different developmental ped, but I'm not too sure about that dx. He does have some characteristics of it (arm flapping, social delays), but as he gets older, I'm seeing him as very social and he's getting along with kids much better. On August 6, we have a follow up with our original developmental ped, so we'll see what they say. I'm sure we'll get a full on ADHD dx this time, we'll see what they say about the PDD. He also has sensory issues: smell, touch (as in he like to crash into things, deep pressure, etc.) and hates loud noises. He's also been very aggressive in the past (but getting better) and very quick to anger. He just finished kindergarten in public school in a 12:1:1 setting, gets OT and counseling and PT will be added for Septmember. I had him evaluated for PT this past spring and he qualifies, as he can't pedal a bike or go foot over foot when climbing down the stairs. This really pisses me off, because he was evaluated in CPSE for PT and they said he was fine. He could have been getting PT for the past 2 years. Oh well. He'll be in the same 12:1:1 setting for 1st grade. This summer I have him in a SN camp for ADHD & high functioning PDD kids and he's been going GREAT! This camp is just fabulous & he loves it! I have to say, we see a huge improvement in him this past year as far as social situations, sharing, transitions & his sensory stuff.

Patrick who is almost 2 1/2 is in Early Intervention for Speech, OT & Special Instruction. I had him evaluated at 18 months, because of Jack's issues and I am always kicking myself for not getting Jack evaluated back then. So I decided to be proactive with Patrick. He is doing great with speech, his SLP think he may not qualify again when he ages out of EI. OT & SI though, I feel he will still need it and I have ro decide whether I want to get him in CPSE early or extend EI. I'm hoping to get him in a center based preschool either in Jan/Feb or for next September.