Autism Spectrum Disorder ..... newly diagnosed

[DHime]

Hi. I am wondering if anyone out there on same boat as me wants to chat. My 28 month old son has just been diagnosed with asd on top of spd, vater, and asthma. Weare just starting the confusing jpurney of researching this who thing. A monumental task, let me tell you.
it has been a rolercoaster of a week with the doagnosis and complete lack of support from those around us. We have even had many insensitive remarks made by those we thought we could lean on.
So hopefully we can all talk and lean on each other here...

 

[Plex]

My little boy whos nearly 3.5yrs was diagnosed on wed with ASD and SPD. It will be good to chat things through as its such a big thing to research!

I think the diagnosis was the easy part as now we're waiting for statementing which i think will take some time

have u been going through this process for some time? xx

 

[Tiff]

Not freshly diagnosed, our girl had it in Oct/12. But I hear you on the insensitive remarks from people close to you! Lots of love sent your way.

 

[DHime]

We are so green it isnt even funny. We are used to other medical issues my those pf the mind are a new ball game. We are waiting on paperwork now too. Then neuro. And we start therapies asap

 

[DHime]

It is hard too since he has so many issues, we feel like we got smacked yet again. The mor research we do, the more we know it is the right diagnosis.
life just sucks sometimes. We suck it up, dry the tears, and start movi g. Right?

 

[Tiff]

Absolutely. But, there's nothing wrong with having a good old fashioned cry about it as well. We wanted Claire's diagnosis, we knew it was what she needed, still didn't stop me from bawling like a baby when we actually got it though.

If there's anything I can say, is that know that its going to hurt and its going to be tough. Allowing yourself moments where you just say "this is bullshit" and let yourself be mad/sad/angry/hurt/upset/whatever you need helps. At least, it did for myself.

I have weeks and months now where it doesn't bother me at all. Totally it is what it is. During those times, I find I don't frequent this board.... not sure if its "out of sight, out of mind"???

But then something happens and I get so sad about it. I should get better with being able to support other people. At times I feel I can't because I'm so overwhelmed with what I have going on in my own life.

But, that's another thing... if you need to take time for yourself and be selfish... do it. It is not easy! But, those who are in the same boat I'm sure understand.

 

[DHime]

thanks. It helps to talk with those who understand better than those who think they understand.

we are starting to look up with each new bitof info we gather. It just sucks. Really sucks for us and you all as well. We haven't started therapies for it other than ot and speech. I am in the, lets get moving stage now.

(posted edited due to forum rules

Requesting (through words or implication) money or charity from the general member population is not permitted. If it is suspected that a membership is being used with the sole intention of procuring free goods, services or wealth, the account may be restricted or banned.

 

[mummy3]

Hey hun

Your post hit a cord with me in a lot of ways, I have 2 kids on the spectrum with mod/sev ASD amongst a lot of medical issues spread out between them. My youngest also has a gofundme though and we've been moving fast with fundraising, more so now out of gofundme, I'll go check it out and maybe can help with some directions. Its crazy overwhelming trying to deal with medical stuff on top of behavioural for sure. My youngest cant eat, his esophagus is breaking down and insurance are fighting to cover his elemental diet, literally the only thing he can eat. Anyway I'll go look and feel free to pm me to add onto FB, different situations but in a lot of ways similar

 

[mummy3]

I read a bit more, wow a lot more similarity! Several of my kids have pectus carinatum, from what I understand its linked to our EDS. We qualify for durable medical equipment for all EDS related equipment, long shot but worth a read to see if connective tissue disorder is a possibility in your son. For sure its rare!!!

 

[DHime]

Wow very similar. Is you lo on a tube yet? Do they know why the break down? Our sons was messed up from the get go.
The docs dont even want tl test him so i have to push for it. What is eds?

I got the neuro appt. They won't see him till mid feb next year. Seriously? I thought the object was to work fast and get them on therapy asap. What good is early detection when they go so slow. Grrrrr. ......

 

[mummy3]

He had an NG, for now he takes his formula by bottle but at the next scope he'll be getting assessed for a J tube. G tube isn't safe in his condition as the stomach contents will still reflux up. His breakdown is from severe eosinophilic esophagitis, his esophagus attacks all foods as allergens. His is moving so fast because he has EDS1 (Ehlers-danlos syndrome classical type 1), which means all his tissue is fragile so the ulceration happens at a much, much faster rate.

Feb?! That's crazy!!! Can you get a different doctor or are you stuck in a network with your insurance?

Eds is a connective tissue disorder.

I've been following your campaign, you're doing good

 

[DHime]

Wow mummy3 you got it rough there. My first thought was a fundopication rather than a j but in your case, not sure i would risk it.
Right now we are in the neuologist waiting list. They cant get him in until mid feb 2015. Rediculous if you ask me.

 

[mummy3]

The fundoplication, might help my guys reflux but his reflux itself is not anywhere near severe, his EoE gives similar symptoms to reflux but different cause. Its the food proteins esp as well as some environmental triggers going in his esophagus that sets off his condition, so essentially any tube has to bypass the esophagus and the GI said it would have to be J tube as some would still go back up with a G tube. He's getting the whole tract scoped both for the EoE and assessment to see if the tube is safe, small chance of eosinophilic disorder in other areas, we got a date of dec 3rd, I'm happy he gets the extra week to recover from the MRI this Friday.

Seriously that is crazy, a wait that long is just not on. Are you on a wait list for a sooner appointment?

How are you guys getting on?