Frustrated (DS' 18 month pedi appt today)

[triplea598]

DS saw his pedi for his 18 month check up today. I told her all of my concerns in regards to his development, and she was a little concerned too.

The first thing she told was that in a couple months if DS' development hasn't improved, that she thinks OT is a good idea. What is OT even for?

When I mentioned his regressions, she said she'll put in a referral to have him see a neurologist. I'm so confused though because what would the neurologist do? Does this sound right? I didn't have time to ask her all of this because DS was throwing a tantrum.


On top of all this, MH said he's "frustrated" and told me "don't count on me going to another one of his appts." So me and DS have loads of support there as you can see.

[cam]

Ugh, so sorry your H is acting like that.

My LO received his ASD dx from a neurologist (we saw one who specializes in ADHD, ASD, etc). We don't have DPs here, so that is what our alternative is. We are following that up with neuropsych to get a more detailed action plan determined, from his PCP's recommendation, not the neurologist's (long story short: fill-in PCP referred to neuro, neuro dx'd and gave us a basic plan of action, regular PCP who has family with ASD said 'No. Not good enough. We want more detail, so go to neuropsych for a more specific action plan and then touch base with me again.').

OT might address a few different things. What are some of the concerns? Sensory and/or fine motor issues seem to be their big topics of addressed by OT.

[hopecounts]

OT can help with sensory and fine motor issues.
Neuro is more of a waste.
Insist on a Dev. Ped referral, most have a 6+ month waitlist so if you apply now he'll be seen between 2 and 3 which is pretty good timing.
Tell your H he needs to get it together. He doesn't get to opt out of supporting you and his son because it's frustrating.
Put it in real terms "i'm frustrated and don't want to go to these appointments either but it has to be done, we are a team and I need you there to back me up and support me and DS."

[triplea598]

Mar 20, 2015 13:41:20 GMT -5 cam said:

Ugh, so sorry your H is acting like that.

My LO received his ASD dx from a neurologist (we saw one who specializes in ADHD, ASD, etc). We don't have DPs here, so that is what our alternative is. We are following that up with neuropsych to get a more detailed action plan determined, from his PCP's recommendation, not the neurologist's (long story short: fill-in PCP referred to neuro, neuro dx'd and gave us a basic plan of action, regular PCP who has family with ASD said 'No. Not good enough. We want more detail, so go to neuropsych for a more specific action plan and then touch base with me again.').

OT might address a few different things. What are some of the concerns? Sensory and/or fine motor issues seem to be their big topics of addressed by OT.

I know it's because he's upset at hearing from DS' doctor that DS is behind. He knows he is, but he hasn't been to one of DS' appts in a long time so I just don't think he was expecting it. Still hard though.

I have a lot of concerns but to try and sum it up: he has zero words (used to say "dog" clearly but can't/doesn't anymore), he JUST started walking but still has difficult because of the hypotonia in his feet/ankles, he doesn't point and will only wave 50% of the time, he doesn't understand us - especially if we ask him to do something, he doesn't play pretend yet, and he plays with toys not the way they're supposed to be played with (meaning he'll just spin or throw toys), he has a fixation on light switches, he grinds and chomps his teeth a lot. There's more but I can't think right now.

He does "socialize" with other kids and people but has no sense of "stranger danger." He will go up to anyone and try to sit in their lap or something.

[cam]

Mar 20, 2015 13:58:54 GMT -5 triplea598 said:

Mar 20, 2015 13:41:20 GMT -5 cam said:

Ugh, so sorry your H is acting like that.

My LO received his ASD dx from a neurologist (we saw one who specializes in ADHD, ASD, etc). We don't have DPs here, so that is what our alternative is. We are following that up with neuropsych to get a more detailed action plan determined, from his PCP's recommendation, not the neurologist's (long story short: fill-in PCP referred to neuro, neuro dx'd and gave us a basic plan of action, regular PCP who has family with ASD said 'No. Not good enough. We want more detail, so go to neuropsych for a more specific action plan and then touch base with me again.').

OT might address a few different things. What are some of the concerns? Sensory and/or fine motor issues seem to be their big topics of addressed by OT.

I know it's because he's upset at hearing from DS' doctor that DS is behind. He knows he is, but he hasn't been to one of DS' appts in a long time so I just don't think he was expecting it. Still hard though.

I have a lot of concerns but to try and sum it up: he has zero words (used to say "dog" clearly but can't/doesn't anymore), he JUST started walking but still has difficult because of the hypotonia in his feet/ankles, he doesn't point and will only wave 50% of the time, he doesn't understand us - especially if we ask him to do something, he doesn't play pretend yet, and he plays with toys not the way they're supposed to be played with (meaning he'll just spin or throw toys), he has a fixation on light switches, he grinds and chomps his teeth a lot. There's more but I can't think right now.

He does "socialize" with other kids and people but has no sense of "stranger danger." He will go up to anyone and try to sit in their lap or something.

No one LIKES to hear their child is has a problem. No one LIKES to deal with a ton of specialist appointments, therapies, IEP stuff, or any of it, but we do it because we LIKE to help our children. Maybe reframing how he looks at it might help. On a far lesser issue but similar type of attitude, I had to do this with MH recently. I kept asking if he would like to do dishes for me. He would say no, he would not like to do the dishes. I finally realized he was stuck on the aspect of not liking to do dishes so he thought it was nuts I would ask him that. When I laid it out, he understood what I actually meant and got on board right away and he now just does them without discussion. I had to specifically say "No one LIKES doing dishes. People LIKE having clean dishes to use and not having a pile sitting there all the time. You should also LIKE doing dishes to help me because you know how hard it is for me to do them right now. You don't have to LIKE the actual act of doing dishes, just the outcome it achieves. I know you aren't going to find enjoyment in doing them because why would you, but you can LIKE doing them because of the payoffs." Ever since I reframed it in that way, he sees it for what it is and not just something unpleasant. I hope something like that could get your H on board with why he needs to be involved in appointments and everything else with regards to your LO's care.

[BostonKisses]

I agree, I'd push for a referral to a DP unless the neuro is one like cam's and would have a subspecialty in ASD and ADHD.

I'm sorry your H is pulling that, and I feel for you. MH pulls the same stuff. I learned quickly that men tend to process things way differently than we do, and it's not uncommon for them to shut down or scream about how frustrated they are when they're hearing confirmation of what they may be seeing. MH is often frustrated over stuff like this, and will go into frustration and denial mode. Once he finally comes to grips with it, we can talk rationally, and that's when he always goes back to the blame. He blames himself for what's happening, and feels like he's a failure. We often have to talk through this stuff, and I remind him that he's not a failure and this isn't his fault. I'm sharing that, because maybe that's what's going through your H's head as well? It could be something totally different, too, because everyone processes things differently and all that. I hope that ramble makes sense.

[princesslily]

It depends on where your child is developmentally, where the OT will focus their attention.

That being said, OT is an amazing form of therapy...DS was dx'd with Sensory Processing Disorder (SPD) at 2.5yo, and our OT focused on balance, as well as tactile acceptance to avoided textures as well as some behavior issues. Basically its therapy for the entire body.

What concerns did they have in the pedi specifically, if you don't mind me asking. DS was the king of tantrums and was known at a very young age to be difficult anytime we went to a pedi appointment.

What helped me keep focused on my concerns when with the doctor was to write down my questions prior to the appointment , and then jot down their answers - repeat that you heard them correctly too. Its hard to focus when your in the moment as is, and is 1000x more difficult with a tantrum child

[triplea598]

Thanks everyone. I will go ahead and ask our EI coordinator if DS can be evaluated for their OT. I'm really thinking we'll probably have to end up having him get the therapy through the private practice though. We just don't have the money for it so I'm stressed out.

I looked it up and we do have a DP in town, but I'm not even sure if my pedi is aware. I think she believes that the OT could diagnose autism? I don't know. I don't know who dx that. I'm so confused but I'll call her Monday morning and tell her I really am concerned and I'll mention a referral to see a DP.

[hopecounts]

Mar 20, 2015 17:13:05 GMT -5 triplea598 said:

.

I looked it up and we do have a DP in town, but I'm not even sure if my pedi is aware. I think she believes that the OT could diagnose autism? I don't know. I don't know who dx that. I'm so confused but I'll call her Monday morning and tell her I really am concerned and I'll mention a referral to see a DP.

OTs can't diagnose ASD, they can suggest that a child shows signs of ASD but diagnosing t is outside their skill set.
A medical ASD diagnosis requires specific testing typically done by a Dev Ped

[mrsbuttinski]

Mar 20, 2015 13:23:50 GMT -5 triplea598 said:

DS saw his pedi for his 18 month check up today. I told her all of my concerns in regards to his development, and she was a little concerned too.

I'm glad she took your concerns seriously.

The first thing she told was that in a couple months if DS' development hasn't improved, that she thinks OT is a good idea. What is OT even for?

OT is for fine motor skills and/or sensory processing issues. Is you child behind on fine motor or struggling with sensory issues? I'd get an eval with EI around this asap. There's no point in waiting; it could potentially "cost" you 3+ months of free services.

When I mentioned his regressions, she said she'll put in a referral to have him see a neurologist. I'm so confused though because what would the neurologist do? Does this sound right? I didn't have time to ask her all of this because DS was throwing a tantrum.

Why a neurologist? 

Does your DS have seizures or significant hypotonia?

In some communities, there are some older neurologists who are experts in ASD. Until about 10-20 years ago, there was no "official"specialty/subspecialty seeing kids on spectrum. Among people I know whose kids were dxd 10-15 years ago, it's a mixed bag of psychiatrists, psychologists, neurologists and dev pedis. 

All things being equal, I'd prefer a dev pedi. IME, neuros tend to order a lot of costly, inconvenient and unpleasant tests that rarely ever bring much to the party. Using an MRI to dx ASD is a bit like looking for your car keys using Google Earth. 

On top of all this, MH said he's "frustrated" and told me "don't count on me going to another one of his appts." So me and DS have loads of support there as you can see.

Not acceptable. He needs to put his big boy pants on and be the father his kid deserves and the equal partner he promised to be when he married you. DS's dev pedi won't even schedule an appointment for a child in a situation like this. 

[beautifultornado]

Your DS is in ST right? She may have a recommendation for a dev pedi. DD's OT recommended her dev pedi and got her in to see him quickly.
As far as your husbands reaction, I just wanted to say I understand. Your a young mom too, if I remember correctly. I'm 21 and so is my DH. He has a much harder time dealing with the reality and has said he doesn't know how I deal with her all day, everyday. We don't just get to be parents, we also have to be cheerleaders and teachers who don't get breaks. Hopefully he realizes soon that being part of the process makes the accomplishments much more exciting!

[mcribster]

I would just get what you need somehow w/o the pedi if you can. Ours was very hands off when it came to DS issues and I think she was just hoping someone else like EI would set me straight that he had ASD. I went in to see another in the practice and insisted on a dev pedi ASAP.

We got a PPO which helps because we can self refer to whatever we need. I understand your DH. DS dx was a very tough time in my marriage between denial and his anger that his son wasn't exactly what he had signed up for. My DS was diagnosed by a neuro which is not very common but can happen. You might want to call them first to see if they do dx or what they recommend. Our EI knew a lot about who to go to and where to call. They were also able to give us extra OT based on clinical judgement while we were waiting for the dx and more services. Good luck!

[triplea598]

Thank you everyone. I was able to find a Facebook group specifically for parents of kids with SN in my city, which is amazing since our city is fairly small. I posted on there, gave a little background on DS, and asked if being referred to neurology is the right step.

I was told that we have 1 DP in town, but that she doesn't typically dx ASD. The neurologist does. Luckily I was given the names of a couple pedi. neurologists whom the parents liked. I'll be calling DS' pedi tomorrow morning to check on the status of his referral(s).

[triplea598]

Another update:
I just now got a phone call from our children's hospital's neurology department. They told me they had a cancellation for tomorrow and asked if we could go in then...otherwise, it usually takes 3-6 months to be seen. I said yes. I'm hoping it goes well.

[new2011mommy]

Good luck with your appointment for tomorrow! It is great you were able to get in so quickly. We had about a 3 month wait to see the neurologist. He was unable to diagnose my DS without further testing, but I did meet a mom who's son received his ASD diagnosis from the same neurologist we saw. I hope you can get some answers. We are now waiting to see a developmental pediatrician in June.

My DS was in OT from September to January. When he started at his new preschool, the times conflicted so we had to stop, but I need to get him back in. The speech therapist recommended the evaluation and then he went weekly and saw the OT and speech therapist together. They worked with him in the sensory room on the swing, the ball pit. They did fine motor activities with him such as drawing, painting, and various crafts. I noticed a difference in his behavior. He was a little calmer when he was in OT. The neurologist did mention I could see a ADHD diagnosis down the line. Since your DS is 18 months, definitely call EI since they are free until age 3. As other posters mentioned, the OT cannot diagnose ASD, but can see red flags. My speech therapist and OT came to me with red flags for autism they saw in DS. Do you have speech therapy through EI? We did not catch my son's speech delay until 3 because he had so many words at ages 1 and 2; however, my friend's daughter was in EI for a speech delay from 15 months to 3 and they were amazing.

My DH had a hard time when I mentioned ASD. It took him several months to accept it. I hope your DH comes around.

Good luck to you tomorrow! You are a great mom to have caught this so early.

[mrsbuttinski]

Mar 23, 2015 15:57:47 GMT -5 Jesslfar said:

Mar 23, 2015 13:13:03 GMT -5 triplea598 said:

Another update:
I just now got a phone call from our children's hospital's neurology department. They told me they had a cancellation for tomorrow and asked if we could go in then...otherwise, it usually takes 3-6 months to be seen. I said yes. I'm hoping it goes well.

Wow, good luck.  Our state just made insurance reforms and the current wait is 2 years for under 6, just seeing a developmental ped without looking for a diagnosis is also 6 months or more. I hope your appt goes well.

Where I live, the best people don't take insurance. If you have a PPO or traditional fee-for-service, you pay out of pocket and submit to your insurance company. The wait for DS's old dev pedi is a couple months most of the time. He also won't schedule unless both parents can attend the appointment except under extenuating circumstances like death or deployment.

[mack]

For us, seeing a neuro was an important step in the process. My daughter has motorneuron abnormalities and very low tone. This is very common in kids with ASD, but it can also be related to a lot of other muscular or neurological conditions. Getting a work up from the pediatric neuro was important to ruling out other causes of her issues. So when we got a clean brain MRI, we were able to rule out any muscular degenerative disorders or CP (which was the leading theory for a long time). I think maybe this is not as important for a kid who might be on the spectrum but isn't experiencing other gross motor delays or severe hypotonia. In your DS's case, given his motor delays, it's probably a good step in the process. Also our pediatric neuro was able to theorize, and she was the first person that said Asperger's to me.