We are waiting for the results of P's genetic testing. Should be at least another 1.5 weeks for the initial microarray and another 6-7 weeks for the specialty panel to come in. I'm still shocked that insurance approved the $$$ genetic testing and is fighting us tooth and nail over $150 of Prilosec or whatever.
We saw his rehab doc last week, and the news was mixed. On the one hand, his legs are in great shape, and his doc fully anticipates he will be walking on a somewhat typical timeline!
On the other hand (no pun intended), his right hand and arm are getting much worse rather than better. He will not use his right hand at all, pretty much, and now that he can roll and scoot he will go to great lengths to use his left instead. He has started posturing with the left side as well. So, we are going to move to a more invasive hard plastic arm brace to keep his hand open. We'll primarily use it at night, which I'm sure will fuck with his already piss-poor sleep. If that doesn't help a lot, he'll be getting Botox therapy in November.
On the skull front, we're visiting with an orthotist next week to see if a cranial helmet might improve things cosmetically without surgery. It's really basically unheard of to do a helmet with fused sutures but his case is atypical, so we'll see. His neurosurgeon and plastic surgeon recommended it, anyway. He's also going to ophthalmology for an initial consult as well since his left eye turns in a little.
I wish I had more positive news but I'm kind of struggling these last two weeks TBH. We started BLW, as suggested by his OT, and he so badly wants to feed himself but he has so much trouble holding things and lifting his arms up high enough to get them to his mouth. I feel like this is the first time I've really seen where he'll be functionally limited and it's rough.
DD is doing pretty well, we had a biting incident last week which hasn't happened in over a year so I'm guessing the change to full time school is stressing her out. The rest of the week was good though so hopefully it was just a one off and she'll continue to settle in OK.
She starts her IEP speech next week which is going to make for LONG days every other week but we need it to keep her IEP in place to make the kindy transition easier so we're doing it.
Oh man, @brie that's a lot!! ((hugs)) Does the geneticist suspect something specific? We got A's genetic results back and everything came back normal even after the Neuro was guessing he had Pierre Robin Syndrome.
We are dealing with many of the same issues here. DS was dx with a CVI last week and will be getting his glasses next week. He looks positively adorable in his glasses, but I hate that this is one more thing he has to deal with and one more specialist to add to our doctor appointment rotation.
His flat spot is getting worse so I'm going to be talking to his Pedi about getting a helmet for him. I'm going to be so sad if he is getting a helmet and glasses in the same month. That is a lot of attachments to his head to have to get used to.
PT and OT are both going well. He going to be adding another day of OT a week sometime soon and then starting speech later this fall.
I have to keep focused on taking things one day at a time, or sometimes one hour a time. I find myself getting very caught up in the future and what is in store for him down the road. I feel really guilty for how much all of this is affecting me when he doesn't even know anything different and is totally happy. I also hate how none of my IRL friends really understand any of this. They are all very supportive and love A, but they just cant relate. I'm obviously grateful that they don't have SN kids themselves, but its very isolating.
GotWine, I wish you were local. I've been feeling the same way. We went to a football game last Friday with friends and instead of having fun, everyone just wanted to talk about P's diagnosis and I found myself repeating the same thing over and over and getting stressed. It kind of sucked.
Re: syndromes, they don't suspect anything in particular but there are enough random soft markers to warrant testing. I suspect if anything comes back, it will just be a random microdeletion or whatever that won't be super informative.
Post by whereintheworld on Aug 25, 2015 9:49:13 GMT -5
I may jump in here periodically. We pursued an evaluation for my DS1 who has always had very difficult behavioural issues but has been increasingly hard to manage in the last 6-12 months.
He scored 99th percentile for hyperactive/impulsive presentation of ADHD per the DSM-5, so that's a pretty definitive diagnosis and we are now exploring how we will get him more supports at school.
We started OT yesterday for sensory integration therapy because big stimulating situations are where he becomes very impulsive and it can be dangerous. I am excited to see more sessions and hopeful for progress.
We are also pursuing a medication trial on the advice of the psychiatrist. We can't start until September 2. School starts back September 8 and I’ll be calling a meeting with his teacher and the principal to discuss strategies and we are pushing for some extra support or to have him pulled out of the classroom for some one-on-one learning since he absorbs information best in small settings and class sizes are 34 kids with 2 teachers – a recipe for a disaster for him, as evidenced by last year’s kindergarten year where he was in trouble constantly.
His self-esteem has taken a dive in the last 6mo and I’m really hoping to help him feel better about himself and to support him in learning how to gain more control of his impulses and emotional regulation.
((Brie)) That's a lot to get through! Many hugs for you!
B is doing well! He went up to the lake with my IL's last night... we'll be joining him tomorrow. He goes back to special needs preschool next Wednesday where he gets pulled out for OT and PT twice a week for each therapy. Last I heard, there's only 5 kids in this class (until more age in as they turn 3) so it'll be nice for him to get the extra attention!
I found out last week that his spine surgeon, who did an amazing job on his neck/spine surgery, is opening a new practice in West Palm Beach, FL! It says he'll still be in NYC a few days/month but someone who knows him IRL told me not to count on that. I don't know if B will need more spine surgery down the road for his scoliosis (they want to see how he grows) but this guy has been amazing! I'd rather not have to travel down to FL for further surgery, but we'll take it one day/month/year as it comes!
I'm just in a holding pattern right now. Waiting for school to start and determine if we should pursue further evaluations. I'm going to mention to her teachers during open house that I want to give it 9 weeks and then during our first conference I'll be leaning on them on whether or not we should pursue other evaluations.
So, she is just hanging out the rest of the summer. Still easily distracted and active. Not as impulsive.
Remind me how old she is? And is it ADHD-hyperactive/impulsive that you suspect? I literally just went through this with DS1 (5.5). I do think that's a good idea to wait the 9 weeks and see what they think - though I will say that DS1 was with 2 kindergarten teachers for the whole year last year and they expressed difficulty with his behavior but didn't make the link to ADHD because his attention span is fine. His real challenge is in impulsive behavior, and it appears that he "isn't listening" because he'll do exactly what you just asked him NOT to do, but it isn't really from a defiant place, it's all about impulse control. His kindergarten teacher actually specifically said he seems calculated and NOT impulsive. But he scored 99th percentile for hyperactive/impulsive ADHD, so clearly there is a clinical issue.
Brie My friend's niece did Botox therapy for her CP and it helped tons. I have no idea why I never thought about it before today, but if you want me to connect you, her daughter has a lot of the same issues as P. She suffered from a stroke as she was being born and needed braces and other devices and therapy. She walked really late, but is now in kindergarten and is keeping up with her peers.
We had DD1's genetics appointment last Monday and she is not "presenting" any symptoms yet to be able to get a clinical diagnosis; if she does, it will be by the time she is 6-8 years old. They are sending me a letter to give to her preschool teachers for symptoms they can watch for.
CPS got in contact with her birth father and he signed releases to all of his medical records pertaining to the NF-1 that runs in his family! Also, his son (DD1's half brother) does not have any symptoms of the disorder and he is a teenager, so there is a chance she may have not gotten the gene for it.
We go back for a checkup in 2 years to the genetic counselor.
Hugs, Brie. That is a ton at once. I'll be keeping things crossed for your orthotist appt. R still isn't rolling and it's adding to the wonky shape of her head but we can't do a helmet because of her shunt. If they do think that it is worth trying for P I just want to share that Q adjusted basically instantly and doesn't mind it one bit.
Hugs Brie. That's a lot to deal with. It's so hard when you see your child struggling with something and you can't fix it.
J had his baked milk challenge today and passed. So now for the next 3 days he has to eat one muffin with the milk in it. If he makes it through thst he has to eat a baked good (made at home) that has milk in it daily from 3 months. Then we move to commercial goods. Increasing the type of exposure from milk to cheese etc. I'm so glad I switched allergist and now we are taking a more progressive approach. Had we not done this we would have continued with yearly testing which wouldn't do anything to help him fully outgrow the allergies. Next we are hoping to do baked egg.
I am frustrated with the girls and walking. I feel like it's one step forward one step back (no pun intended). Both realize they are faster not walking and crawling or knee walking so they won't walk all the time. It's driving me crazy. When we are out of the house we try to really push walking and they seem more willing then.
We saw the Oncologist last week for an ultrasound, chest x-ray, and bloodwork -- everything looked AWESOME. Plan from here is to do an MRI and partial chest CT every 3 months for a few years, probably going down to every 6 months until we get to the 5 year point. Downside is that for the foreseeable future, he will need to be under general anesthesia for the scans. But the radiation exposure should be pretty minimal.
We're awaiting his PT evaluation, are on the waiting list for speech, and have a referral to see the ENT in 3 weeks to see about getting tubes put in his ears. Hopefully the tubes will help with his hearing (fluid has not been draining between EIs) and will improve his speech (he currently has no words at nearly 17 months), and may also help with his balance so we can get this little guy walking (right now he's not even standing unassisted).
Overall we're pleased with the progress he's been making.
That is great news on the allergies @awinter - fingers crossed he does well over the next several days!
R has an EEG tomorrow to see if we can try to drop another dose of her seizure med. I wish EEGs could predict whether she will seize, I have a tough time falling asleep at night sometimes.
She is making great progress with grabbing her feet, but we are still continuing to work on rolling and gaining control with her arms in certain directions and grasping/strength for picking things up. I ordered a bunch of mini inflatable beach balls from Amazon and she loves them!
Post by longtimenopost on Aug 25, 2015 18:39:32 GMT -5
Every day has ups and downs. I'm so thrilled with the progress DD has made cognitively and I try to put the physical stuff out of my mind. She's progressing, though, so we have to focus on that. She can now go up and down stairs on her own! We finally have to keep a close eye on her like most people do with their 9 month olds.
I'm feeling bummed about our fall schedule... I'd love to put DS in a "fun" after school activity, but it looks like he'll be doing PT, Psych (therapy), and Social Skills already in the afternoons, and I just can't imagine adding another after-school activity until we know how he does w/ a full day at school. Honestly I think we should do OT, too, to give him more time to work on his writing. He writes just fine, but he goes very slowly. I suppose they think it's more of a processing (mental) thing, but I'd think that doing OT type stuff might help, too. So after we see how things are going, we might have him re-evaluated for that as well.
Last week I shared w/ DS's counselor that I felt like I wasn't helping him enough, and she suggested starting parent training - so *I* will have to start going to her every other week, too. I need an attitude adjustment - I'm grouchy about it all and don't want to do any of it. ha!
This sounds like he may be drawing his letters rather then writing them which would be an OT issue. Handwriting without tears could help with this as well as general OT work around writing. Make sure they aren't passing off a physical issue as a mental one, which it may be but I'd want to cover my bases before I let them label it as such. if he is drawing instead of writing the sooner it is addressed the easier school will be for him.
Ollie is doing alright. I think he is getting a cold - he is a little crankier than usual and just not himself. He did just wean off his last heart med, so I am hoping that it is not related and that if he does get a cold, it doesn't affect his heart.
We have our goal review with birth to three tomorrow and I am going to request more frequent visits from OT and PT.
On a positive note, he is a month away from his first birthday! I can't believe it! We started shopping for party supplies tonight and scheduled his first pro pictures. We plan on sending one to his cardiologist, home health nurse, NICU nurses, and peds hospital nurses with a note thanking them for their help in getting him to his first birthday. He spent right around 60 days in the hospital in his first 6 months of life and sometimes had nurse visits a few times a week, so we are got to be very close to his team and are so grateful for all they did for him (and us).
Ollie is doing alright. I think he is getting a cold - he is a little crankier than usual and just not himself. He did just wean off his last heart med, so I am hoping that it is not related and that if he does get a cold, it doesn't affect his heart.
We have our goal review with birth to three tomorrow and I am going to request more frequent visits from OT and PT.
On a positive note, he is a month away from his first birthday! I can't believe it! We started shopping for party supplies tonight and scheduled his first pro pictures. We plan on sending one to his cardiologist, home health nurse, NICU nurses, and peds hospital nurses with a note thanking them for their help in getting him to his first birthday. He spent right around 60 days in the hospital in his first 6 months of life and sometimes had nurse visits a few times a week, so we are got to be very close to his team and are so grateful for all they did for him (and us).
That is such a great idea. They are going to love those pictures.
She is now 16 pounds 9 ounces which is small for 11 months. But such an improvement. She is on double her nexium which is 10 mg in the am and 10 mg in the pm. So far since we doubled it her breathing has improved. She recently had the stomach bug and then a small cold I was worried she wouldn't gain anything. She still managed to gain 12 ounces. She seems to be enjoying food so much more. She eats about 30-36 ounces a day plus puree's 4-5 times a day. She is also on Doucal for her weight and it's added to her food once a day.
The biggest obstacle we have right now is PT. It takes a month to get approval. We are now waiting on insurance (3 weeks in). They will be coming 3 times a week to hopefully give her a bootcamp style of help to get her to catch up. She still doesn't sit up on her own yet. She likes to stand all the time but sitting up seems to be really uncomfortable for her. (I think her acid is increased in this position)
I never really understood how bad silent acid reflux can be and how painful it is but she serious pain for six months. I think she has really slowed her down developmentally. The PT feels that with enough PT she will improve because she really wants to move but her left arm and leg are stiff compared to the rest of her body. Likely due to stress and pain she felt.
I am worried about school starting next week. When I stopped in last week to pick up paperwork and find out about his teacher I was told the school didn't yet have a copy of his IEP. I had sent it in when I sent in all the enrollment paperwork. It seems like they are planning to put him in a Gen Ed classroom possibly without an aide. This will not go over well. There is an open house tomorrow where I hope to get some more answers.
I am worried about school starting next week. When I stopped in last week to pick up paperwork and find out about his teacher I was told the school didn't yet have a copy of his IEP. I had sent it in when I sent in all the enrollment paperwork. It seems like they are planning to put him in a Gen Ed classroom possibly without an aide. This will not go over well. There is an open house tomorrow where I hope to get some more answers.
I've had situations where DS's actual IEP transferred between buildings at the absolute last minute. This was a big issue in high school because band started before the school year and DS had some issues around which his band teachers were unaware. I got a very nasty note from them and copied the director of special services and the building principal on my reply to read his damned IEP.
That said, his supports were always in place as dictated by the IEP I signed at the end of the prior year.
You don't have a ticker, so what grade is this class and what kind of school is it? If it's a private setting, they may not be able to provide an aide and can potentially not allow your DS to stay. Most mainstream private schools won't service IEPs.
I'd speak with them before and outside of the open house. The teacher will likely need this time for general curriculumand housekeeping information. It isn't appropriate to discuss an individual child's needs at an event open to other families like an Open House or Back-to-School Night.
I'm late but I'll check in. The time change makes it hard.
We have started school and the school hires the speech therapist we use. They hired a new one for this year. We are now in our 3rd week and she hasn't reached out to me in any way so I have no idea who she is. I got a note home from the teacher that said the SLP will see my kids 1x a week for a ST session OR playing with them together in their classroom. What? I need an explanation of that - since she said this before having seen my kids or their summer ST reports. We are also doing OT and I'm pretty sure they are not focusing on fine motor skills, which was the whole point of going there. I know I need to contact them and I'm procrastinating bc they don't speak English well. Bah. Im just so frustrated. The progress DS2 is making is soooooooo slow.
I am worried about school starting next week. When I stopped in last week to pick up paperwork and find out about his teacher I was told the school didn't yet have a copy of his IEP. I had sent it in when I sent in all the enrollment paperwork. It seems like they are planning to put him in a Gen Ed classroom possibly without an aide. This will not go over well. There is an open house tomorrow where I hope to get some more answers.
Doesn't his IEP specify his support level? If not, you may want to have it amended quickly and very specifically. Different districts all seem to run differently, but if you're in an area like mine (and I think you may be fairly close for some reason), I'd be very concerned since they have a lot of special Ed issues. Dealing with our district on placement was a huge pain since DS doesn't fit their pre-prescribed little groupings well.
Yes it does and I also sent in an email describing in more detail what program he was in previously and the plan for the coming school year. Calls to the office to enquire about programs resulted in an answer of "we will review the IEP and place him in an appropriate program." I am afraid we are going to have to have an emergency IEP meeting or they will at the last minute tell me he has to attend a different school since they don't have a program for him at this one.
He has an IEP primarily for social/emotional/behavioral issues. He does great for the most part but when he doesn't it is brutal and can result in epic meltdowns, him running away, etc. We have fought against having an SED label as he has had so much instability.
I am worried about school starting next week. When I stopped in last week to pick up paperwork and find out about his teacher I was told the school didn't yet have a copy of his IEP. I had sent it in when I sent in all the enrollment paperwork. It seems like they are planning to put him in a Gen Ed classroom possibly without an aide. This will not go over well. There is an open house tomorrow where I hope to get some more answers.
I've had situations where DS's actual IEP transferred between buildings at the absolute last minute. This was a big issue in high school because band started before the school year and DS had some issues around which his band teachers were unaware. I got a very nasty note from them and copied the director of special services and the building principal on my reply to read his damned IEP.
That said, his supports were always in place as dictated by the IEP I signed at the end of the prior year.
You don't have a ticker, so what grade is this class and what kind of school is it? If it's a private setting, they may not be able to provide an aide and can potentially not allow your DS to stay. Most mainstream private schools won't service IEPs.
I'd speak with them before and outside of the open house. The teacher will likely need this time for general curriculumand housekeeping information. It isn't appropriate to discuss an individual child's needs at an event open to other families like an Open House or Back-to-School Night.
This is a public school and he is going into 1st grade so they have to support him. I haven't even been told who his teacher is yet, when I have asked I have been told he hasn't been assigned to a classroom yet. New families get access to the school and teachers 90 minutes before everybody else.
I would love to have done this prior to today but the lack of information has made that impossible.
Post by carolinagirl831 on Sept 1, 2015 20:27:51 GMT -5
Ugh we've had a rough week. Mia has clearly been so uncomfortable and in pain most of the weekend . We thought it was her reflux it she got so fussy I took her to the pediatrian Friday afternoon thinking she had another uTI Due to her kidney reflux of a uti is suspected she has to have a cathed urinalysis. Ugh my poor baby it took 3 tries to get the catheter I with her screaming the entire time. We just found out her urine was clear today, so no infection. Just her reflux I guess. We upped her mess a lot and are starting to see improvement. Now my confession is I have been over dosing her. Her last dose of reflux my meds was 2.5 dissolvable packets and her pediatrian said to double it 2x a day. When I picked up the new packets, they were 5 mg so now we only needed one. I just realized tonight what I did I feel terrible, sleep deprivation is killing me! My bil a pharmacist assured me shel be fine, but I stil feel bad.
I've had situations where DS's actual IEP transferred between buildings at the absolute last minute. This was a big issue in high school because band started before the school year and DS had some issues around which his band teachers were unaware. I got a very nasty note from them and copied the director of special services and the building principal on my reply to read his damned IEP.
That said, his supports were always in place as dictated by the IEP I signed at the end of the prior year.
You don't have a ticker, so what grade is this class and what kind of school is it? If it's a private setting, they may not be able to provide an aide and can potentially not allow your DS to stay. Most mainstream private schools won't service IEPs.
I'd speak with them before and outside of the open house. The teacher will likely need this time for general curriculumand housekeeping information. It isn't appropriate to discuss an individual child's needs at an event open to other families like an Open House or Back-to-School Night.
This is a public school and he is going into 1st grade so they have to support him. I haven't even been told who his teacher is yet, when I have asked I have been told he hasn't been assigned to a classroom yet. New families get access to the school and teachers 90 minutes before everybody else.
I would love to have done this prior to today but the lack of information has made that impossible.
Did he go to kindie somewhere else? Did you move districts?
If he's moving into a new district with an IEP, it might be best to hand deliver a copy to the building principal today. They have to honor the current IEP- if you've moved they will re-evaluate and write a new one. If you're not, he'll get an aide only if that is stipulated in the IEP which you signed.
In elementary, DS's next year teacher was always included in his IEP meeting at the end of the year as the gen ed representative on the CST.
You could also consider writing a letter of introduction for the teacher if your child has some behavior concerns or situations that are handled best using a specific protocol. Of course you don't want to tell a professional how to do their job, but if you can share what has worked for previous teachers, most will be receptive. I always gave DS's teachers permission to contact DS's psychologist if they had concerns.
This is an example of one such letter written for students with Aspergers. It was intended to be edited to meet the needs of an individual child. For other dxs, you'd need to come up with something different, but it's a good example of the sorts of things to include.
This is a public school and he is going into 1st grade so they have to support him. I haven't even been told who his teacher is yet, when I have asked I have been told he hasn't been assigned to a classroom yet. New families get access to the school and teachers 90 minutes before everybody else.
I would love to have done this prior to today but the lack of information has made that impossible.
Did he go to kindie somewhere else? Did you move districts?
If he's moving into a new district with an IEP, it might be best to hand deliver a copy to the building principal today. They have to honor the current IEP- if you've moved they will re-evaluate and write a new one. If you're not, he'll get an aide only if that is stipulated in the IEP which you signed.
In elementary, DS's next year teacher was always included in his IEP meeting at the end of the year as the gen ed representative on the CST.
You could also consider writing a letter of introduction for the teacher if your child has some behavior concerns or situations that are handled best using a specific protocol. Of course you don't want to tell a professional how to do their job, but if you can share what has worked for previous teachers, most will be receptive. I always gave DS's teachers permission to contact DS's psychologist if they had concerns.
This is an example of one such letter written for students with Aspergers. It was intended to be edited to meet the needs of an individual child. For other dxs, you'd need to come up with something different, but it's a good example of the sorts of things to include.
Yes we just moved across the country. I sent an introductory letter, his IEP, progress reports and contact info for his previous SPED teacher. Seems like the enrollment office chose to ignore all this.
His IEP states that he needs a 1:1 aide when in gen Ed classes. I called the enrollment office to find out which schools in the area would have a program similar to the one he was in and was told they would put him in an appropriate school. Requests for calls back went unanswered.
It is very frustrating, and last night I find out that his school does not have a program to support him so we are likely switching schools.