Special Needs Check-in 9/24

[Brie]

How is everything going?  Any updates or questions?

P got his helmet and is adjusting well, which is great.  He's also made huge strides in sitting independently for long periods of time, and he will push up to all fours and rock back and forth like he wants to start crawling?

We also got his preliminary genetic testing results yesterday, and unfortunately they weren't all clear like we'd hoped.  The good news is that there is no distinct syndrome diagnosis, but he did have a few "variants of unknown clinical significance" which is a bit of a bummer.  I am genetics stupid so I don't totally understand what's going on--hopefully the final report will be helpful.  The geneticist didn't seem super concerned but we are to follow up if he starts exhibiting some different symptoms.  Blah.

We also did an optometry visit last week and while his eye health is excellent, they think he may have some peripheral vision loss in his right eye.  It's too soon to really test it for sure though so I'm just kind of throwing that on the back burner for now.

laurenh @barefootbarista KaraOrNot @domerjen liveintheville VillainV GotWine NandaB jessnpaul chickenlittle puplove214 longtimenopost @kar MamaMaui24 auntie swank origami @awinter abs hopecounts rikki mainelyfoolish mrssandro mrsfarmer carolinagirl831 

[Brie]

Oh, and a question: how do you handle it if your team of caregivers disagrees?

For example, P has two OTs. One OT is very into using braces to keep his hand open and preserve range of movement. The other OT wants him to keep the brace off more so he can get sensory input on that side. I like them both and get their points but who do you listen to?

[mrsfarmer]

DD1 has had some regression with her temper/behavior, a lot of defiance, but preschool told us to expect that. We are focusing on earlier bedtimes. Some of it can be the genetic disorder or normal toddler behavior - we're working with school to keep an eye on it.

Otherwise she has been wonderful!

[Deleted]

The last couple of weeks have been really rough. J started preschool last week. He is crying at drop off every morning. But what absolutely broke my heart was when he told me he had cried 2x on Tuesday. I asked when the second time was and he told me when they were on the stairs to go outside. I asked if he didn't want to go outside and he said no, he did want to go outside.

Through some more discussions about it he told me that it was because all of he other kids were going faster up the stairs and he was slow. He fell behind with a teacher.

I pretty much expected this would happen. There are tons of stairs and J still can't really alternate his feet and is slow. This is the first time the hypotonia has had such a big impact on something and caused him to be upset and notice his abilities are different than his peers. I hate that I couldn't fix this for him.

Last night H worked with J going up and down our stairs multiple times and today when I picked him up I did notice he was faster. I'm hoping if we are really diligent about helping him get the practice he needs it will get easier for him.

[mrssandro]

I was hoping this would be posted soon. I have a lot of random thoughts.

So I talked to the PT lady about DD#2 and she is telling me that is making major strides with PT. She is showing improvement daily. She has had about 12 sessions (a little less than a month) and she has made progress of what usually would take 3 months. The biggest issues she struggles with is tightness in her left arm and right leg. She seems to love her PT lady and knows when she sees her she will have to work. But doesn't cry at all. She is probably around the level of a 6-9 month old when it comes to body movement and strength. She is saying it doesn't matter how far behind they are...as long as they show improvement which she is doing that she 100% recover.

Here is where I start getting worried. I wonder what the hell caused this. Is it normal for a baby under stress to get tight in the muscles especially if the baby was in pain? I wish I could find someone who went through this because still feel like it's a unknown what is wrong with her. Also, she is still very raspy when she breaths and I think it's still the reflux. I am worried that ultimately she is going to need surgery of some kind to repair it. I am just not that comfortable with the unknown. We might go down the path of getting genetic testing since maybe she has something.

Also with all this working out of her muscles (the pt lady says that it's equivalent to doing yoga) the baby has a lot of trouble getting to sleep at night. Once she out..she is out but it seems to be taken longer. She is getting a lot of teeth in as well. DH refuses to give her Tylenol since he doesn't want to hurt her liver (she is on relux meds and miralax) but the PT lady recommends it.

So lots of pros and cons. Lots of waiting and wondering what will happen.

[Deleted]

Brie, that would be hard. I have a co worker who was asking me a similar question a few weeks ago but he was faced with his pedi's opinion versus a specialist so he deferred to the specialist.

Which do you think is the larger concern? Keeping his hand open to maintain range of motion or sensory input? Is there anyone else that could weigh in on that?

[Deleted]

mrssandro, Im sorry, I don't recall the background on your daughter. What stress was she under? And what exactly is the muscle tightness? How old is she?

[abs]

Sept 24, 2015 13:08:36 GMT -5 @awinter said:

The last couple of weeks have been really rough. J started preschool last week. He is crying at drop off every morning. But what absolutely broke my heart was when he told me he had cried 2x on Tuesday. I asked when the second time was and he told me when they were on the stairs to go outside. I asked if he didn't want to go outside and he said no, he did want to go outside.

Through some more discussions about it he told me that it was because all of he other kids were going faster up the stairs and he was slow. He fell behind with a teacher.

I pretty much expected this would happen. There are tons of stairs and J still can't really alternate his feet and is slow. This is the first time the hypotonia has had such a big impact on something and caused him to be upset and notice his abilities are different than his peers. I hate that I couldn't fix this for him.

Last night H worked with J going up and down our stairs multiple times and today when I picked him up I did notice he was faster. I'm hoping if we are really diligent about helping him get the practice he needs it will get easier for him.

DD has hypontonia.  The best thing we did for her was swim lessons.  It worked her core and gave her some killer strength.  Now we do gymnastics.  She still wears out quickly and when I pick her up from school she is a sweaty mess (the last hour is on the playground) but she can keep up with her peers easily now.  Do you seen an OT?  If not I'd schedule an eval.  They can give you ideas on how to work his trunk more.  I hope things get easier for him soon!

This week I am just over therapy.  DD is doing great and I shouldn't really complain but I'm just done.  We've been doing speech therapy for nearly three years now and I don't see an end in sight.  All of her speech errors are age appropriate but based on her history she will never learn the remaining sounds on her own.  The actual therapy is fine.  DD likes both of her therapists and enjoys going.  They make it fun for her.  It's just exhausting.  Two days a week after school instead of going to do fun activities or going home to relax we have to rush off to speech.  Then there is the whole paperwork headache.  Submit stuff to insurance.  Deal with the school SLP who had outdated goals I didn't agree with.  ARD's.  IEP's.  I just want a break from it but nope.  Not going to happen for awhile.

On the positive side she has pretty much mastered "s" in the beginning and ending of words.  Now they are working on it in the medial position.  "L" continues to be challenging for her but she can do it.  Just needs lots of reminding.

[abs]

Sept 24, 2015 13:00:17 GMT -5 Brie said:

Oh, and a question: how do you handle it if your team of caregivers disagrees?

For example, P has two OTs. One OT is very into using braces to keep his hand open and preserve range of movement. The other OT wants him to keep the brace off more so he can get sensory input on that side. I like them both and get their points but who do you listen to?

I'd probably let both do it their way for awhile and see what benefits P the most.  The good thing about multiple therapists is they can bring different perspectives and strengths.

[Deleted]

abs, he isn't in any therapies anymore. When he aged out of EI he didn't qualify through the school system and the pedi and PT felt he was caught up enough and didn't need any therapy right now. I think the problem with the stairs is primarily left over from habits created when he was weaker. He always led with the left foot and we didn't correct it. Now that we are really encouraging him to alternate his feet his right leg is having to catch up.

He has been doing swimming once a week for the last 1.5 years. The girls do it 1x a week too now. It really is great for building up their strength!

[mrssandro]

Sept 24, 2015 13:18:56 GMT -5 @awinter said:

mrssandro, Im sorry, I don't recall the background on your daughter. What stress was she under? And what exactly is the muscle tightness? How old is she?

Brief History Summary
DD has severe jaundice at birth. Almost over 30 so they thought that she might have brain damage of some sort
While recovering from her jaundice level she had a seizure and the meds almost caused her to stop breathing on her own
She had a ton of problems with suck/swallow and had to learn to eat 
She starts eating well and gains some but then she gets a hernia and needs surgery
She has surgery and for some reason she stops gaining weight
She was a little less than 10 pounds at 6 months, diagnosed as FTT
Put on reflux meds and gains slowly. They think it's silent reflux and I tend to agree. She has had testing for everything. MRI, Hormone test
She is roughly about 17 1/2 pounds at a year and looks like she is growing but she can't sit up on her own yet and can't crawl or turn over on her own. Likes to stand mostly and just recently started playing with toys.

Over all they think that her lack of development with crawling and sitting up is the fact she was in pain from the reflux for 6 months unmediated. So her muscles are tight but not hypertonia tight. 

[Brie]

Sept 24, 2015 13:15:23 GMT -5 @awinter said:

Brie, that would be hard. I have a co worker who was asking me a similar question a few weeks ago but he was faced with his pedi's opinion versus a specialist so he deferred to the specialist.

Which do you think is the larger concern? Keeping his hand open to maintain range of motion or sensory input? Is there anyone else that could weigh in on that?

I tend to think that keeping the hand open is more important.  Like, if he loses range of motion in that hand, it's really really hard to get it back, but we can provide sensory input under the brace throughout the day and at night when it comes off.  I just feel like a dick telling one OT that we're going to try it the other OT's way first, LOL.

[Deleted]

Sept 24, 2015 13:31:35 GMT -5 mrssandro said:

Sept 24, 2015 13:18:56 GMT -5 @awinter said:

mrssandro, Im sorry, I don't recall the background on your daughter. What stress was she under? And what exactly is the muscle tightness? How old is she?

Brief History Summary
DD has severe jaundice at birth. Almost over 30 so they thought that she might have brain damage of some sort
While recovering from her jaundice level she had a seizure and the meds almost caused her to stop breathing on her own
She had a ton of problems with suck/swallow and had to learn to eat 
She starts eating well and gains some but then she gets a hernia and needs surgery
She has surgery and for some reason she stops gaining weight
She was a little less than 10 pounds at 6 months, diagnosed as FTT
Put on reflux meds and gains slowly. They think it's silent reflux and I tend to agree. She has had testing for everything. MRI, Hormone test
She is roughly about 17 1/2 pounds at a year and looks like she is growing but she can't sit up on her own yet and can't crawl or turn over on her own. Likes to stand mostly and just recently started playing with toys.

Over all they think that her lack of development with crawling and sitting up is the fact she was in pain from the reflux for 6 months unmediated. So her muscles are tight but not hypertonia tight. 

Hmm, I don't know. Given all that happened in those early months I wouldn't rule out there being something larger at play than just a side effect of the pain. I can see maybe the pain causing her to sort of clench her muscles and then not work on developing them as she normally would have though. So much happens so quickly in the first year that I think something like that could derail things But I don't know, I'd be curious too.

My co workers son has some form of severe reflux. I can't recall the name. But they saw a neurologist to rule out seizures because when he would have a bad reflux episode he looked like he was seizing. I know he does have some tight muscle issues. He also has sensory processing issues and some other things going on too though so I'm not sure how or what may be related to eachother.

As far as wanting to stand, J was like that. He couldn't crawl and always wanted to just stand. His trunk and upper body muscles were his weakest area so he loved being upright and standing holding onto something. Then he was mostly just using his legs which were stronger but he could be upright to see around.

I do agree though that if she is progressing that quickly it is a really good sign!

[Deleted]

Sept 24, 2015 13:36:45 GMT -5 Brie said:

Sept 24, 2015 13:15:23 GMT -5 @awinter said:

Brie, that would be hard. I have a co worker who was asking me a similar question a few weeks ago but he was faced with his pedi's opinion versus a specialist so he deferred to the specialist.

Which do you think is the larger concern? Keeping his hand open to maintain range of motion or sensory input? Is there anyone else that could weigh in on that?

I tend to think that keeping the hand open is more important.  Like, if he loses range of motion in that hand, it's really really hard to get it back, but we can provide sensory input under the brace throughout the day and at night when it comes off.  I just feel like a dick telling one OT that we're going to try it the other OT's way first, LOL.

Lol. I get that. I'd feel the same way. But in this case, I think you sort of have to pick one. So I'd just tell her what you told me and go from there.

[auntie]

I'm sorry about the cognitive dissonance created by two trusted member of the team who hold opinions 180 degrees apart.

Is there another team member to break the tie? Or does the reasoning from one feel more compelling to you?

DS psychologist and his dev pedi were in agreement about DS's dx, but were at odds as to how to best deal with academic issues and placement. Dev pedi believed in a smaller nurturing private school and the psych thought DS stood more to gain from learning to cope with the mainstream if our goal was independence down the road. 

We tried 2 smaller private schools and while they were a good fit for a time, overall the big public school forced him to grow socially in ways the smaller schools couldn't. 

DS is happy to be off tomorrow and Monday because of the popapocalypse.

[mrssandro]

@awinter see it's such a weird case. I think she shouldn't be so tense in her body from reflux so I am very worried about what else is going on. Maybe worried is the wrong word here. I would rather be informed than keep on just treating things as they are coming.

I will add that I had 2 miscarriages before having her. I often wonder if there is some major compatibility issues going on. We did get genetically tested and all was good with us.

The thing is she is very clever baby and her personality is coming through. I think mentally she is functioning at 12 months. She loves music and gets so excited with water and bath time. She wants to move and that is good for the PT part of this.

[VillainV]

Everything is pretty much the same with C. He goes in for his first MRI/CT in a few weeks (which he will do every 3 months for the next several years).

He is off the waiting list for PT! Starts next week. We are still waiting on approval for his SureSteps, which I think will help a lot. He will probably be waiting for Speech for another month or so, but in the meantime will have a feeding assessment next month. Tubes go into his ears on Monday, and we think that will make a huge difference with his speech and with his motor skills. His signing is going GREAT though, and he's picked up a few new signs in the last week or so.

[Deleted]

Sept 24, 2015 13:54:23 GMT -5 mrssandro said:

@awinter see it's such a weird case. I think she shouldn't be so tense in her body from reflux so I am very worried about what else is going on. Maybe worried is the wrong word here. I would rather be informed than keep on just treating things as they are coming.

I will add that I had 2 miscarriages before having her. I often wonder if there is some major compatibility issues going on. We did get genetically tested and all was good with us.

The thing is she is very clever baby and her personality is coming through. I think mentally she is functioning at 12 months. She loves music and gets so excited with water and bath time. She wants to move and that is good for the PT part of this.

I think I understand what you are saying. You want to make sure you are treating the root cause of the problem not just treating a symptom as it pops up. I'd feel the same way. Because if there is something else going on treating these symptoms may not actually help long term.

Does she seem tense now? Or not since you started the reflux meds?

Eta: scratch that, she is tense now hence the PT. But I guess what I'm saying is does it seem to be ongoing or like something that improved with the meds?

[mrssandro]

Sept 24, 2015 13:57:15 GMT -5 @awinter said:

Sept 24, 2015 13:54:23 GMT -5 mrssandro said:

@awinter see it's such a weird case. I think she shouldn't be so tense in her body from reflux so I am very worried about what else is going on. Maybe worried is the wrong word here. I would rather be informed than keep on just treating things as they are coming.

I will add that I had 2 miscarriages before having her. I often wonder if there is some major compatibility issues going on. We did get genetically tested and all was good with us.

The thing is she is very clever baby and her personality is coming through. I think mentally she is functioning at 12 months. She loves music and gets so excited with water and bath time. She wants to move and that is good for the PT part of this.

I think I understand what you are saying. You want to make sure you are treating the root cause of the problem not just treating a symptom as it pops up. I'd feel the same way. Because if there is something else going on treating these symptoms may not actually help long term.

Does she seem tense now? Or not since you started the reflux meds?

Eta: scratch that, she is tense now hence the PT. But I guess what I'm saying is does it seem to be ongoing or like something that improved with the meds?

When she is upset she tenses up all over. When she is chill she is not stiff or tense. She does not arch her back anymore after she eats. So the reflux meds are working to keep her comfortable but you can tell she is still wheezes from her throat. ENT looked at her throat a few times and both times he said it's frothy because of the reflux. 

The tightness in the arm and in the leg is the only noticeable parts of both that are stiff. The PT lady is focusing on massage therapy for these parts. 

[mrssandro]

Sept 24, 2015 13:53:36 GMT -5 swizz said:

I'm still waiting for the referral (not sure why, we don't need referrals through our insurance...) for the hearing test. I'm not particularly concerned that she has a hearing issue, so if this drags on too long, I may just wait until we're back in DC.

I did start the process for getting an evaluation at the big ASD clinic in DC that was recc'd to me. They have a 10mo-ish waitlist so I figured the earlier we get on that the better.

I made some flash cards today for the fridge and pantry in hopes that it will cut down a bit on some of the speech/language frustration. We'll see how they go over!

Question: We haven't been assigned a SLT yet, but I do know there isn't one in our area (was told by ladies who did evaluation) and we'd have a general therapist (whatever that means). If we were staying, I'd absolutely be looking into private therapy, but since we're not, I'm inclined to just delay therapy until we're back in DC (late October, early November-ish, so around a month or so).

Does this make sense? I feel like starting and stopping won't be particularly helpful for her, and/or starting with someone I'm not entirely confident is skilled to do this.

I would wait on the PT honestly. It can take a least a month to set up. There is a long battle with insurance. I would also check to see if DC has EI as your little one is still under 3. Some states pay for PT. 

Did you see my rec for the Frisco/Dallas doctor? Dr. Gamble (Ent of Texas)

[monsterz]

The start to school has not gone as smoothly as I would have hoped. While I thought we got jr moved into an appropriate program it sounds like it is more for kids with more severe behavior problems than he has and as a result is behavior is regressing. I will get this figured out eventually.

On the plus side when we met with our new counselor yesterday she said that given the trauma he has experienced and the number of transitions he is doing really well.

[jessnpaul]

@awinter - we have the same problem with the leading foot. He can totally do it, but he needs to be reminded! And it's definitely harder for him due to his spinal issues (he's missing ribs on his left side which causes scoliosis which makes movement a little harder).

We're working with OT on him dressing and undressing himself. We got an email today asking us to not put him in jeans for school so they can work with him. Can I tell you how much I hate sweatpants? I think they're so sloppy. But I know that it's for his own good, so be it. But the thing is sweatpants fall right off him 'cause he's so damn skinny! I bought some from Carters with a functional drawstring however I didn't realize they were fleecy and it's still 80 degrees here!

Looks like I'm going to be shopping for more loose-fitting pants this weekend (FWP, i know!)

[Brie]

Sept 24, 2015 14:47:14 GMT -5 jessnpaul said:

@awinter - we have the same problem with the leading foot. He can totally do it, but he needs to be reminded! And it's definitely harder for him due to his spinal issues (he's missing ribs on his left side which causes scoliosis which makes movement a little harder).

We're working with OT on him dressing and undressing himself. We got an email today asking us to not put him in jeans for school so they can work with him. Can I tell you how much I hate sweatpants? I think they're so sloppy. But I know that it's for his own good, so be it. But the thing is sweatpants fall right off him 'cause he's so damn skinny! I bought some from Carters with a functional drawstring however I didn't realize they were fleecy and it's still 80 degrees here!

Looks like I'm going to be shopping for more loose-fitting pants this weekend (FWP, i know!)

What about pull-on jeans?  I buy these for C because he has a Buddha belly and they hold up well.

www.childrensplace.com/shop/us/p/toddler-boy-clothes/toddler-boy-clothes/toddler-bottoms/pull-on-straight-jeans---liberty-blue-2008194-527

[jessnpaul]

Sept 24, 2015 14:50:14 GMT -5 Brie said:

Sept 24, 2015 14:47:14 GMT -5 jessnpaul said:

@awinter - we have the same problem with the leading foot. He can totally do it, but he needs to be reminded! And it's definitely harder for him due to his spinal issues (he's missing ribs on his left side which causes scoliosis which makes movement a little harder).

We're working with OT on him dressing and undressing himself. We got an email today asking us to not put him in jeans for school so they can work with him. Can I tell you how much I hate sweatpants? I think they're so sloppy. But I know that it's for his own good, so be it. But the thing is sweatpants fall right off him 'cause he's so damn skinny! I bought some from Carters with a functional drawstring however I didn't realize they were fleecy and it's still 80 degrees here!

Looks like I'm going to be shopping for more loose-fitting pants this weekend (FWP, i know!)

What about pull-on jeans?  I buy these for C because he has a Buddha belly and they hold up well.

www.childrensplace.com/shop/us/p/toddler-boy-clothes/toddler-boy-clothes/toddler-bottoms/pull-on-straight-jeans---liberty-blue-2008194-527

True... we might even still have a pair in his size! I just bought all 3T but he's still really a 2T and I don't want to buy any more 2T jeans since he's almost out of them (but not quite there yet!)

[jessnpaul]

Sept 24, 2015 15:07:19 GMT -5 swizz said:

Sept 24, 2015 14:47:14 GMT -5 jessnpaul said:

@awinter - we have the same problem with the leading foot. He can totally do it, but he needs to be reminded! And it's definitely harder for him due to his spinal issues (he's missing ribs on his left side which causes scoliosis which makes movement a little harder).

We're working with OT on him dressing and undressing himself. We got an email today asking us to not put him in jeans for school so they can work with him. Can I tell you how much I hate sweatpants? I think they're so sloppy. But I know that it's for his own good, so be it. But the thing is sweatpants fall right off him 'cause he's so damn skinny! I bought some from Carters with a functional drawstring however I didn't realize they were fleecy and it's still 80 degrees here!

Looks like I'm going to be shopping for more loose-fitting pants this weekend (FWP, i know!)

Have you tried the sweat pant type pants/boys leggings at HA? I think they're nicer looking and obviously better quality than random Hanes sweats.

No! Off to look... HA is my new favorite store

[longtimenopost]

DD finally got her new orthotics this week! Smos for both feet since her right foot was starting to overcompensate in strange ways for the left. She's still standing and cruising all over the place and building up courage to take her first step. However, we're still trying to get her to engage her left side more. As she becomes more active, I'm noticing big differences in her muscles on each side.

I think she's really thriving at preschool, though. They love her and she really enjoys going!

[longtimenopost]

Brie we've dealt with that a lot. At first we just sort of tried to do everything, kind of throw everything at her and hope something works. Eventually we had to pick a path/therapy model and stick to it. It's hard because we do second guess ourselves when things get tough or progress slows down, but you have to go with your gut!

[MamaMaui24]

Sept 24, 2015 14:47:14 GMT -5 jessnpaul said:

@awinter - we have the same problem with the leading foot. He can totally do it, but he needs to be reminded! And it's definitely harder for him due to his spinal issues (he's missing ribs on his left side which causes scoliosis which makes movement a little harder).

We're working with OT on him dressing and undressing himself. We got an email today asking us to not put him in jeans for school so they can work with him. Can I tell you how much I hate sweatpants? I think they're so sloppy. But I know that it's for his own good, so be it. But the thing is sweatpants fall right off him 'cause he's so damn skinny! I bought some from Carters with a functional drawstring however I didn't realize they were fleecy and it's still 80 degrees here!

Looks like I'm going to be shopping for more loose-fitting pants this weekend (FWP, i know!)

We got DS some cute sweatpants at Nordstrom Rack. They're more fitted and thinner than real sweatpants. "Toddler Fashion sweats?" Lol. Something like that.

[Deleted]

Sept 24, 2015 14:47:14 GMT -5 jessnpaul said:

@awinter - we have the same problem with the leading foot. He can totally do it, but he needs to be reminded! And it's definitely harder for him due to his spinal issues (he's missing ribs on his left side which causes scoliosis which makes movement a little harder).

We're working with OT on him dressing and undressing himself. We got an email today asking us to not put him in jeans for school so they can work with him. Can I tell you how much I hate sweatpants? I think they're so sloppy. But I know that it's for his own good, so be it. But the thing is sweatpants fall right off him 'cause he's so damn skinny! I bought some from Carters with a functional drawstring however I didn't realize they were fleecy and it's still 80 degrees here!

Looks like I'm going to be shopping for more loose-fitting pants this weekend (FWP, i know!)

I put J in the elastic waist loose stretch jeans from old navy. Would those be an option? He can dress himself in those because there isn't an actual button and an elasticized waist in the back.

[momof2boys]

I haven't posted on this board yet, but my DS has severe anxiety and depression. We are waiting for a neuropsych eval b/c we think we are missing something else but its a 5-12 month wait. He has had the worst two weeks ever. He now has a 1 on 1 aid for the first time ever at school b/c he has been running and hiding from teachers and staff (obviously a safety concern, so this follows him everywhere). I can't get him on the ice at hockey for practices he gets so anxious. Then he gets upset when I say find we are leaving. The last three practices I have had to carry him out while he was yelling and everyone was watching us. He is way too big for me to carry, so its kinda a half carry, half drag. Tonight I lost it and just yelled at him and pushed him in the car. Then I felt like an asshole and sobbed the whole way home. We started a new med last week, doesn't seem to be helping at all. I just have no idea how to help him
His therapist can't see him until next month b/c she is away and we have an appt wih a psychologist at the end of next week. He did so well last year once he started meds, I did not expect this and i'm not handling it well. I'm just so sad and scared for him. I feel like he's going to give up things he once loved and lose his friends, and god the thought of him as a teenager scares me to death. This post is really depressing, sorry