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Forum: Children with Special Needs


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May 28th, 2009, 04:28 PM
iamkc's Avatar Platinum Supermommy
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Milo had a one year checkup today. It wasn't exactly great. He's had a fever for a couple of days, which is the double ear infection coming back. This is his third round of strong, long-round antibiotics for what seems like the same infection. Because of the fever, they couldn't give him immunizations, so we'll get those next week at the follow-up. Not a big deal. I was sort of glad that he didn't get them today.

The good thing-the exercises for his torticollis seem to be working! But I think that they've been working for a while. He still pulls a little when he sits up, but not NEARLY as much.

Plagiocephaly not resolving-not even a little. We've discussed it a few times, so I knew that it was coming. We'll wait for the MRI, but the ped thinks that it's craniosynostosis. He's also not progressing in several gross motor areas, so they'll most likely up hit PT, but she's leaning toward a "CP-like" diagnosis...which I sort of don't understand, because that's what he has already. Maybe she means a more permanent one. I don't know why I didn't ask. I guess I just assumed that maybe she forgot that that's what he is already. LOL I wouldn't put it past her!

No weight or height gain. Maybe a TEENY bit, but nothing really measurable. Not as worried about that. It seems to be The Way of the Milo.

He has to repeat bloodwork because some of the numbers are "out of range." I didn't get to talk with them-that was just the message. We've had MANY false alarms with bloodwork. He's just hard to get blood from, so sometimes they damage the cells, etc. It's been scary, but so far, nothing actually nearly as bad as what they THINK it is!

He has the terrible cough again, too. Doc is hoping that the infection is knocked out with the ear antibiotics.

I think there was more. I'm pretty sure that it would have been easier to say, "Everything that has been wrong with your kid is still wrong. The things that we thought were wrong with him are most likely wrong. The things that we can't figure out are still a mystery-and yes, they're definitely wrong."

Kannon didn't go for an official visit, but the ped wants me to watch him closely. Even she saw "something" not right with him today...and from what I've described. We're still just going to treat the reflux, but they'll probably want to see about apnea again. It could also be allergies. I'm hoping for allergies. No picnic, either, but easier and less invasive to manage for now.

I know that I'm leaving out stuff. LOL You wouldn't think so by how long I go on...
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May 28th, 2009, 05:55 PM
Ditzzy's Avatar Stupid Lamb;)
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I really hope it's not Craniosynostosis and that he feels better super fast. Poor little guy.
I know how frustrated you feel, hon. You're not alone. You're both in my T&P as you (hopefully) get answers! You have so much going on, please remember to take care of you too! ((Hugs))

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May 28th, 2009, 08:47 PM
iamkc's Avatar Platinum Supermommy
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Thank you! I know that it's not nearly as much going on as a lot of people, but that's quite a load for a well-child checkup! On the one hand, I just want to sit back and wait for the next step. On the other, I know better-I have to be one step ahead of them! I already have to fight with anesthesia, I think. When they finally see Milo, they always end up agreeing with me, but over the phone, I think that they think that I'm just a paranoid parent. He has to be intubated a certain way, has to be propped during anesthesia, they'll have to have an in-room anesthesiologist, and they have to avoid a couple of different anesthesias for him. For all of it, though, I've already researched, I've sort of prepared to hear it, and mostly, I'm just worried about what the MRI will show...but excited, too.

Blah blah blah.

Wow. I'm incredibly long-winded. I'm really not in person. I just talk and type when I'm nervous! LOL
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May 28th, 2009, 08:54 PM
AlexKatieAiden Mommy's Avatar Linda
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I just went through a similar scare with cranio. My son has torticollis and they thought that his plagiocephaly was craniosynostosis but a CT scan ruled it out, thankfully. Good luck with everything and know that most children with torticollis who have a mishapen head have plagiocephaly and not craniosynostosis. If that makes sense.
Here is a website dedicated to children with Cranio if you want to check it out. The parents over there are excellent and helped me through the couple of days before the CT scan. Craniosynostosis Support - Powered by vBulletin

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Last edited by AlexKatieAiden Mommy; May 28th, 2009 at 08:58 PM.
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May 29th, 2009, 04:49 PM
iamkc's Avatar Platinum Supermommy
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Thank you, thank you! I'm not sure if I've come across that site yet!

I certainly hope it's not cranio! His plagio just hasn't gotten any better. The whole right side of his head is forward. He sleeps on the back left, which should have pushed it forward, even a little. Nothing. So, we'll see. We're hoping that his head is just stubborn. Many of his other body parts have proven to be, so maybe...

Going to try not to think about it, though...try. HA! Have been running around all day trying to get Medicaid renewed for him, but his case worker is a real %@^$. He has a sleep study Monday, MRI Tuesday morning when he wakes up. She told us that they may not be covered, we may want to cancel. We're assuming that we'll be approved again, but if not...wow. Still, DH and I just CAN'T cancel, of course! I don't know if we'd qualify for SSI or Medicare for him...

His party is Sunday, so I don't want to think about it then, either! LOL I'm desperately working on getting ahead with paperwork, but playing his life one day at a time...not sure how I'm doing!
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May 29th, 2009, 06:31 PM
docsmomma's Avatar Platinum Supermommy
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You SHOULD qualify for SSI for him. We JUST today were told that Joey's SSI has been approved. I would suggest applying for it.
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May 29th, 2009, 07:15 PM
stacyp's Avatar Mommy to Andrew & Luke
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I would apply for SSI. You never know & it would be a huge help. It's expensive to have a SN child, but you already know that.

I hope Milo gets better soon.

Thanks Yvonne (Jaidynsmum) for my beautiful siggy!

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May 31st, 2009, 01:32 AM
iamkc's Avatar Platinum Supermommy
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Thank you! I've looked into SSI, but we've never been able to pursue it. We have to go downtown and wait in the office there for hours and hours, not something we can do with Milo. Someone at the hospital said that they may have a way around that. I thought that we could just get the paperwork and fill it out, send it in, get docs to order everything, etc. Wish me luck!
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May 31st, 2009, 12:31 PM
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You can actually go on ssa.gov, and do most of the paperwork there. There was only 2 times I had to go into the office, and the wait wasnt too bad, and Milo doesnt have to be there. And regardless of whether you get the medicaid taken care of right away or not, take him to his 2 tests this week anyway. Medicaid will retroactively cover it anyway.

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