Hello Ladies, new here w/a dx FINALLY!

iVillage Member
Registered: 07-17-2009
Hello Ladies, new here w/a dx FINALLY!
3
Fri, 07-17-2009 - 10:52pm

Hello! I decided to come out of lurkdom and introduce us!

My youngest son, Griffin, was diagnosed last week with PDDNOS. It's been a long road to that DX, though. I will try to make a very long story somewhat shorter...

Griffin's pregnancy, labor and birth were completely normal. The first night in the hospital, he latched on and was animated and awake. After that night, he became very lethargic and was unable to breastfeed so we had to start bottle-feeding him breastmilk. At four days of life, he began to have seizures and ended up in the NICU for 10 days. He was diagnosed with BINC (benign idiopathic neonatal convulsions) which basically means he had seizures and they don't know why. They did many tests and all but the EEG came out normal. The EEG was "sparky," so they placed him on phenobarbital. At three months of age, his follow-up EEG was normal so we began weaning him off of it.

At four months of age, the NICU sent an early intervention team to check on him and they were concerned about reflux, stiffening and strabismus. He was sent to a gastro-ped for the reflux, given glasses by a optha-ped and started PT/OT. He was very behind for all of the major physical milestones, but was generally a very smiley, sweet baby. A neurologist told us that he had hypotonia (low muscle tone).

His speech then became a concern. He seemed to have a desire to communicate, but it seemed to me that there was a disconnect there somewhere. Eventually, the therapists recommended a dev-ped and we were told over and over that he was testing at about a 30% dev delay. Because of his affectionate nature and constant desire for normal interaction and eye contact, we were told that he would not fit the autism spectrum but would probably be dx'd as mentally retarded with secondary autistic characteristics. He did, however, have sensory disorders at the time. He has minor transition issues, but nothing that really causes him to be a problem in public at this point...except for an irrational fear of water and haircuts.

More testing and a trip to a geneticist told us nothing. No one could find anything "wrong" with him. Our insurance changed recently and we have a new dev-ped that spent more than 10 minutes looking at him. She has concluded that he is not MR, but PDDNOS. She told us that MR is strictly an IQ dx and without an IQ test she would never dx that. She also noted a number of other characteristics that point right at PDDNOS...like potty-training issues, arm-flapping, rituals and repetition.

There's much more, but I'm sure I've bored you all to tears...you've all been there done that, huh? I just wanted to make sure that I introduced us with enough background to help for now.

I'm very interested to learn about:
1. Kindergarten (we are a year away thanks to his Nov birthday) and anything that will help us help him.
2. Also, we are interested to investigate whether or not we should try and have anymore children...we know no one has answers, but your opinions and experience would help greatly.
3. Finally, any help regarding helping siblings deal with this?

Nice to meet you all!

♥ SHELLEY
~i~ (11-12-94)
♂ Michael (08-02-01)
~i~ (08-09-03)
♂ Griffin (11-09-04) PDDNOS, Hypotonia, Strabismus




Edited 7/17/2009 10:57 pm ET by shelles_belles
♥ SHELLEY
~i~ (11-12-94)
♂ Michael (08-02-01)
~i~ (08-09-03)
♂ Griffin (11-09-04) PDDNOS, Hypotonia, Strabismus
iVillage Member
Registered: 03-27-2003
Sat, 07-18-2009 - 7:25am

Welcome!

                                

iVillage Member
Registered: 04-28-2007
Mon, 07-20-2009 - 11:55pm

Hi and a very warm welcome,

I have two boys with ASD (9 & 6) and a neurotypical daughter (2 1/2). My oldest is technically the most impacted but he also has a comorbid diagnoses of mood disorder(nos) and adhd. My 2nd son has Asperger's syndrome and dysarthria (low muscle tone in the jaw and tongue) and we just came through his kindy year. What made his Kindergarden year as successful as it was was in large part due to a great IEP, wonderful gen ed teacher who tried her best at everything with him. It also really helped he had completed his preschool year in the same school under the special ed umbrella, and thus had his pre k teacher still looking out for him (she was on the same hallway as Kindy).

I would seriously look at having the school district assess Griffin (great name btw:) for services. My 6 year old has been in school services and EI since he was 2 and it has been his biggest advantage. My oldest didn't get real supports until 1st grade and I am convinced that is why he is "more impacted" today. Even though we had the boys and at the time I thought Liam was on the spectrum but Cian just needed speech therapy I still had my dd. She is about as unspectrum as you can get, lol, but does exhibit some precociousness in terms of her speech and language. She is a deep pressure seeker, and sleep is always optional, but there is no way in God's green earth would she receive any dx other than very bright, curious and not needing much sleep.

Welcome again and know we have all btdt, no matter how nutso you think it is:)

Dee (Liam-9-ASD/ADHD/Mood disorder-nos; Cian (6) Aspergers/Adhd/Gen Anxiety disorder/Dysarthria; Roan (2-NT)

iVillage Member
Registered: 06-25-2003
Tue, 07-21-2009 - 6:54pm

Hello and welcome,

I have two kids. My son, 11 is definitely Spectrum, and my daughter, 9 is on or close to it.

The question of having more children is a deeply personal one. It is definitely true that if you already have a child on the spectrum, there is a higher statistical risk that subsequent children will be effected, too. I don't know the actual statistics. We had wanted four children, but as my son was quite deeply impacted as a child (he improved hugely as he got older), we decided that we just would not be able to cope if we had another kid like him. So we stopped at two.

I second the opinion that you should get him on the radar with the school district. He may qualify for some services now, (speech therapy, OT or a special preschool) which will really help him to get ready for K. Call the district central office and ask about a preschool evaluation for special Ed.

Siblings.. Hmmm. Not sure. Both my kids have special needs, so I haven't really dealt with this one. I think there are some books out there. I will have a looksee and repost to this thread.

Please feel free to hang here with us as much as you need, to share and ask as many questions as you need. We have no limit per customer!


-Paula


visit my blog at www.onesickmother.com



-Paula

visit my blog at www.onesickmother.com