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Forum: Children with Developmental Delays and Disorders


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April 12th, 2008, 02:31 PM
SandKmommy's Avatar Platinum Supermommy
Join Date: Sep 2005
Location: North Idaho
Posts: 30,101
Just kind of an opinion topic, about my son, I guess, Sorry If I'm bothering you ladies.

Seamus was born July 18th, 2006 at 39weeks 6days, induced, I had GD, PIh and HG(severe morning sickness). They took him from us sortly after birth because he wasn't breathing right and they wanted to do his hearing test. He failed the first test they gave him. They brought him back to us about 3 or so hours later. He was a breastfed baby but had latch issues causing me to have to use a nipple shield for the entire 12.5mo I breastfed, the lactation specialist at the hospital said he had an issue bringing his tongue forward(a problem we've recently delt with, with learning to use a straw) Not long after we got him back though he started vomiting, and the doc said it was normal with new babies. He got jaundiced and was in the hospital for a few more days, all while still having issues vomiting. I had to take him to the ped's quite often over the next 2 weeks we had him home, the vomiting got wose, and after more then 4 docs and NP we finally got an answer Acid Reflux, he was put on prevacid and it helped, he still vomited but not as often or as bad.

The 2 month mark was a big one, thats when his bowel issues started(just before 2mo) he stopped going poo, when he did go every 7-10days it was super hard and he was screaming all day. The doc said to start giving him 2oz of pear juice, it didn't work. Also at 2mo he was diagnosed with Torticollis, and started Physical Therapy. I noticed the shape of his head, it seemed odd to me, so I asked the PT and she agreed, I found that alot of babies that have Torticollis have Plagiocephaly too, at his 3mo check(he went to the doc alot for his pooing and reflux) she agreed it was Plagiocephaly. Also at that point we notice the first jump in head size.

Seamus pooing issue didn't fix itself with juice and at 6mo he was put on a laxitive, it didn't work, he had a barium enama and there weren't any problems with his bowels, and the doc was puzzled as to why he had issues going poo. The doc was also puzzled as to Seamus' delays. He wasn't sitting unsupported yet, couldn't roll right, was't babbling yet, and not sleeping through the night. He also haddn't gained more then a few oz in 2 months.

Seamus' delays continued, I can't remember the exact ages with out digging out his book but he didn't sit unsupported till about 9mo, didn't get into the sitting possion on his own till about 10.5mo and didn't start crawling till a few mo before his 1st birthday. He said his first word, Mama at 10mo and used it for a few weeks then learned Dada, and stopped saying mama, he didnt' say mama again till January of this year (18mo old). Just after he learned to crawl he learned to climb on things, how to undress himself and take his diapers off. At 15mo he learned to walk, And recently he's learned to put on his socks and shoes(right foot always first) and take them off. He says a few words, but mostly jabbering/babbling.

Hes always been one to play by himself for hours and hours, I used to babysit a baby just 10 days younger then him and he wanted nothing to do with her. He will play with kids but not for long, he likes "him" time.

I forgot above to add back in September we had an evaluation by his PT program and we brought up his "hearing" issues, He seemed to "Ignore" us, even when we yelled, or loud noises were going on. They tested his hearing and he failed his left ear. We had another test done, and he scored under normal for his left ear and just above normal for his right but the specialist said that there was nothing they would do at this time other then test him every 6mo. He hasn't been back sense do to our move, but still has the same issues.

He also has an issue with his leg, it always seems to drag, he uses it, but when crawling he dragged it, and walking he will take almost 2 steps with his right leg to 1 with his left, and the doctor isn't sure why.

He does have Macrocephaly of unknown reasons, his head is as big as a 5yr olds now, and still growing.

Sorry for that book. Off to work now, If I think of more I will add it later.

Thanks for reading

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April 12th, 2008, 03:04 PM
rabbitranch's Avatar est. 2000
Join Date: Jul 2007
Location: central FL
Posts: 13,918
First, big hugs to you. I've seen you on the Siggy board and I know some of the worries you've been through.

Honestly if I were in your position, I would take my child to see a genetecist. I would be concerned about some sort of genetic disorder given the multiple symptoms. I have a friend whose son was finally diagnosed with Bannayan-Riley-Ruvalcaba Syndrome, a very rare disorder that causes macrocephaly, seizures, developmental and learning delays, and sometimes tumors. He is six and it took many years for them to go through many doctors who dismissed her concerns. They were finally pointed in the direction of a geneticist and got their answer. I am happy to say his condition is responding very well to medication!

Whatever you choose, I hope you get some peace of mind soon.

Heidi, mama to 5 kiddos and an lost 11.25.13 at 11w5d
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April 12th, 2008, 06:20 PM
Tammyjh's Avatar Platinum Supermommy
Join Date: Nov 2004
Location: North
Posts: 7,824

(((((hugs))))) Thats such a lot for a little guy...and mom and dad to go through.

I agree with Heidi on seeing a geneticist. Have you been to a neurologist yet? If not, it may prove helpful.
Sending lots of positive thoughts your way and hope that you can find the help you need for your little guy.

Thanks for taking the time to share with us and please keep us updated on Seamus
Tammy, Mom to
Abby (19), Kacie (13), Chase (11), & Jacob (7)

"...They're supposed to make you miserable! That's why they're family!" ~ Bobby ~ Supernatural
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April 12th, 2008, 10:15 PM
pautumnsun's Avatar Mega Super Mommy
Join Date: Feb 2005
Location: Boston Ma
Posts: 1,226
ditto with everyone else. Take care
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April 12th, 2008, 10:47 PM
MrsStuartD's Avatar Platinum Supermommy
Join Date: Aug 2007
Location: Ontario, Canada
Posts: 23,164
I'm so sorry you both have have it so hard. I don't have any advice, but I sure hope it all gets figured out soon.

Thanks Nicole (MommaDucks) for my new & awesome siggy.
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April 13th, 2008, 10:15 PM
picklesmama's Avatar <;,><
Join Date: Apr 2006
Posts: 22,604
Ditto seeing a geneticist and neurologist, great suggestions. I haven't any advice of my own but lots of (((hugs))). And please don't feel like you're "bothering" anyone - please do post about Seamus - even if we can't offer anything other than hugs and sympathy, we want to hear from you and offer our support in any way we can!

Crissy mama to Jack 7.16.01 ~ Mia Bella 10.29.02
Angus Pickle 2.24.04 ~ Sydney Bean 10.26.06 & Kater Tot 2.15.09

Looking for fun lunch ideas for kids? Check out my blog: BentOnBetterLunches!
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