Neurologist appointment for Matthew

mommyof4boys

Back from the neurologist with not much news. He wants Matthew to have an MRI of his brain and said he looks like he's SO close to being on the spectrum but for one thing. Matthew  responds when people try to have a conversation with him. He's too social which is funny since he has started backing away and not talking to people lately. We have the name of someone to go to for a new developmental pediatrician. I had called them Tuesday before all of this and they haven't returned my calls. I called again and they said they will call back later. FRUSTRATION! Then he told me "You have enough going on. Do you really want another difficult to deal with label for Matthew? I mean, you have 2 other kids with difficult labels. I'm afraid you couldn't mentally handle it." What I can't mentally handle is knowing there's something "wrong" with Matthew and no one can figure out what it is!

 

JenGK

I feel you.  I posted below re out appointment yesterday with a developmental pediatrician, and Z has some things that indicate autism, and other social things that say he's not autistic.  So we are left with a general DD diagnosis.  So frustrating that no one can figure it out (we saw Dr. Greenspan before he died and now this new person).

mommyof4boys

Auntie, honestly, I thought perhaps he has CP given he was 3 lbs 8 oz at birth and is having tons of motor issues.  We have calls into 3 developmental pediatrician places.  He is so very socially immature it's crazy!  He walks up to people and tells them his entire life story and will ask questions of everyone.  He is afraid of the dark, afraid to be alone, etc.

birdie_1010

My six year old with AS is hyper-social as well.  He doesn't know where to draw the line when talking to people and wants to talk to each and ever person that he sees on the street, in a store and on the playground.  He yearns to be social, but is socially inappropriate for his age. 

I would consult with a development pediatrician regarding your autism concerns and leave the CP diagnosis up to the neurologist.  

jsugrin

-auntie-:

mommyof4boys:

Back from the neurologist with not much news. He wants Matthew to have an MRI of his brain and said he looks like he's SO close to being on the spectrum but for one thing. Matthew  responds when people try to have a conversation with him. He's too social which is funny since he has started backing away and not talking to people lately. We have the name of someone to go to for a new developmental pediatrician. I had called them Tuesday before all of this and they haven't returned my calls. I called again and they said they will call back later. FRUSTRATION! Then he told me "You have enough going on. Do you really want another difficult to deal with label for Matthew? I mean, you have 2 other kids with difficult labels. I'm afraid you couldn't mentally handle it." What I can't mentally handle is knowing there's something "wrong" with Matthew and no one can figure out what it is!

 

I'm not buying. This guy sounds like a dud.

I'm a little biased against neorologists for kids on spectrum who don't present with seizures. They always want MRIs and CAT scans for their collections. What does he expect to find? Will having your child undergo an expensive and inconvenient test bring anything to the party? Or will they come up with some random finding that is interesting to them and worrisome to you but offers little in the way of explanation or way forward?

Any clinician who would say a kid is too social to be on spectrum immediately raises a red flag in my book. For some kids on spectrum, it's not that they're antisocial, it's that they're socially immature and inappropriate. Many kids with Aspergers and PDD-Nos are too social.

I really disagree with his notion about you not dealing with a difficult lable. That's condescending and unprofessional and just idiotic. Labels, even "difficult" ones, can help you find a path to getting the right mix of services and supports to help Matthew grow to be his best self.

I'm frustrated for you.

I would suggest finding the best dev pedi you can, even if it means travel.

So, so true.  Someone telling me they were worried about my mental health with another label for my kid would see my ugly side.  Who says something like that, it sounds more like an ignorant "friend" comment not something to come out of a "professionals" mouth.  What a jackass.  Docs that say such stupid crap automatically become suspect in my book.

I'm with Auntie on the MRI too, what exactly are they looking for, what do they expect to find or rule out?  If they are not things that would contribute to a diagnosis or treatment plan then what value to the have to you .

I hope that you find someone that can give you the answers to give Matthew what he really needs.

Florak8

This is somewhat a tangent, but the MRI could help find a cause of CP. An MRI found DS' PVL, which is an injury to the motor area of the brain, which often causes various types of CP (both spastic and hypotonic). Small preemies are some of the more common people who have PVL. That was not the case for us (only 5 weeks early and over 6 lbs), but when you mentioned your concern for CP and the small preemie-hood, it rang a bell in terms of my reading about PVL.

Regardless, this guy sounds not so hot, so maybe a new neurologist is in order. When you meet the new one, mention the concerns about CP. 

Hang in there!  

thefuturemrskudla

FloraK8:

This is somewhat a tangent, but the MRI could help find a cause of CP. An MRI found DS' PVL, which is an injury to the motor area of the brain, which often causes various types of CP (both spastic and hypotonic). Small preemies are some of the more common people who have PVL. That was not the case for us (only 5 weeks early and over 6 lbs), but when you mentioned your concern for CP and the small preemie-hood, it rang a bell in terms of my reading about PVL.

Regardless, this guy sounds not so hot, so maybe a new neurologist is in order. When you meet the new one, mention the concerns about CP. 

Hang in there!  

 

Exactly.  You'd need an MRI to tell you whether he has CP, since CP involves some sort of brain anomaly.  An MRI could also indicate if he has some kind of condition that increases his risk of seizures.

mommyof4boys

The doctor said because Matthew has a 118 IQ he thought CP could be ruled out. When I taught I had a girl my first year with mild CP and she was cognatively fine.  It was her motor skills that were off.  We have had a few people mention CP to us because of his motor skills.  He has low tone but to be fair, so do all 3 of our younger kids.  DH does and it was inherited through him since he has the 16p.  He has balance issues.  His gait is still unsteady; he is clumsy!  We had to ask for an aid on his bus since he was crawling up the stairs.  He couldn't physically get up them on his own and the driver wouldn't let me on.  It is in their contract to not let the parents on and they can't get up to help.  His aid asked if we see a neurologist and said she'd give info on what he sees as well.  She pulled me aside and said she didn't know how I would feel about her coming out and saying something to me about what she sees but felt the need to anyway.  I welcomed it and gave her a brief history on him and the medical portion.  I also told her about his encopresis.  He's getting a medical clean out on Tuesday at the GI suite in CHOP.  That can be an issue with CP.

 We had Christopher's birthday party here today.  What a hoot!  We had 6 kids on the spectrum and Matthew was similar to one of the kids that came.  The mom asked if Matthew had PDD_NOS as well.  She said her son PDD_NOS and was quite talkative and could be social.  I have a friend whose son has Asperger's.  She came with her daughter; the son was invited but didn't want to come with all the kids since he doesn't do well with large groups.  She keeps saying that Matthew is similar to her son.  

We have the name of someone out of Columbia Presbyterian so I'll have to call there.  This neurologist through CHOP told us he didn't want to do repeat MRI scans on Chris who has delayed mylenation just to keep an eye on it.  Both geneticists and the genetic study neurologist told us to get them.  The geneticist through Columbia said to use one of theirs then and she'd tell him to do it.

I would love to go OOP and find someone who could figure out what is going on with Matthew. The problem is we are living on one income and have paid 6K OOP for 4 years in a row.  We can't afford it.  We're stuck in a rut.  We don't make enough to pay our bills and are struggling to do so.  I've tried getting a teaching job but honestly, there's no way I could with all the appointments we have with 3 SN kids.  We were getting SSDI but apparently George now makes about 200 a month over the limit in NJ as NJ they consider financial before medical.  We also make too much for the medical card.  It's funny since he makes what they consider poverty level according to the EI system here when Chris was in that but we don't qualify for any assistance.  When we had SSDI I was able to pay off some medical bills, pay for his therapies, and buy groceries.  We weren't struggling as much.  We only got about 400 a month but it was enough to really help out!

I think we'll have to take another trip to Boston if need be.  They are in our HMO plan and are another amazing place.  We stayed up last year with Chris right outside of the city and spent about 500 dollars between hotel and food while we were there.  That wasn't too bad.  

While talking to another 16p mom yesterday though, she said that Matthew sounds exactly like her son.  The geneticist said she thought he had the 16 p but the SNP array was not sensitive enough to pick it up.  I feel like we're on a wild ghost chase and we're never going to get answers!  

Florak8

Ha! DH's best friend has CP and is working on a PhD.

mommyof4boys

Full scale of 118, verbal of 116, performance of 112.  Processing speed of 104/

mommyof4boys

You mean like Jon's who has a Full scale of 107, verbal of 104, Performance of 108 and a processing speed of 97?

I looked up Jon's information.  Jon's and Matthew's were done around age 5 as they were supposed to transition from preschool to elementary school. 

mommyof4boys

We now have paperwork coming and appointments at 2 places.  One being Hunderton Medical Center and one being at CHOP through someone who knows about the 16p11.2 duplication.  I know you said their Autism program wasn't good.  I don't want to do them.  I want to do a developmental pediatrician.  Are they one in the same?  I am so frustrated!

 Once George wakes up, I'm going to talk to him more about going to Boston.  I'm not sure where else may have a good place that we can go to.  Hunderton said their evaluation costs around a thousand dollars per kid.  I can't afford that if we were to have to pay OOP.  I have to call up my insurance and see how much they will pay for it as they bill it differently than an office visit.  Are there any other good programs?  Is John's Hopkins good?

mommyof4boys

We're about 35-40 minutes from Bucks County.  We went there to see the neurologist Friday.  I talked to George about it and we're trying to see if it is more cost effective to go to somewhere else and go once a year or wait it out and pay OOP.  After the day we had today I'm convinced to travel where ever we need to for him.  I'm so frustrated!