|
Post by austinsmommy on Nov 4, 2008 18:55:18 GMT -5
My son is 11 yrs old w/ds. He was always a happy, loving and outgoing child. He loved to hug people, strangers even. He loved music and dancing. He also enjoyed and loved his game consoles. About 6-8 wks ago he went thru some sort of change. He caught a cold and had some chest congestion. Just like most sick kids he became lethargic. Well after a few days the cold went away, but he lethargy remained. He started to become very withdrawn, and non-interactive with anyone. He started having "accidents" on wetting the bed. He started having a hard time falling asleep. He quit playing his video games. Now he walks around in a "zombie" like state. I took him to his pediatrician and she did a CBC where his WBC came back really low. The following wk she wanted another one done. When I brought him into her office, she told me he had lost more color in his face and told me to just take him the children's hospital. When I took him to the ER he was admitted for constipation. I did advise the doctors of his altered mental status and they did an EEG, MRI of his head, and also a Lumbar Puncture for fluid. All these tests came back normal. They also did several blood tests. All came back normal. We were at the hospial for almost a week. We are now home and still no change. Except for the constipation thing. He still walks around like a zombie and still there is no interaction. When I talk to him, it's like he doesn't hear me, but I know that he does. Oh and when he does talk its in a whisper. He also covers his ears a lot, but the doctors said his ears looked fine. I have no idea what to do or how to find a DS Specialist in my area. If there is anyone out there that had similiar situations please let me know. Thanks so much.
|
|
|
Post by susan on Nov 4, 2008 19:05:01 GMT -5
This did occur in my daughter, took almost 2 yrs. for her to come out of it. Just like you, went to see every specialist possible. Now, she is back to being happy, little whispers, and lots of loud talking. My heart does go out to you. Please keep talking and reading to him.
|
|
|
Post by ALLISA on Nov 4, 2008 19:59:29 GMT -5
I'm so sorry that you are going through this very puzzling thing.... But glad you came here....I hope someone can help you find some answers. The entire situation isn't something I have encountered....but.....you did peak my interest with the bedwetting......and the cold prior to it. My son ( non ds) is Diabetic.....and frequent urination ( and bedwetting ) is a common symptom. Type 1 Diabetes is an autoimmune disease and is often seen immediately following illness.....body attacks pancreas while attacking illness. The lethargy and loss of color in face are also pretty common. I know that you said he had blood work done and I would assume a Blood glucose level would be part of that. But, I thought I'd throw it out anyways....frequent thrist and urination are the # 1 signs....and when I say frequent I mean every 30-45 minutes needing to do both....pee and drink...... I hope you get some answers....it must be very scary ...... and welcome to Uno.....it is a great place to be !
|
|
|
Post by austinsmommy on Nov 4, 2008 20:07:47 GMT -5
Yes, he was tested for all sorts of auto immune diseases. Among the tests were ALL, Diabetes, Thyroid, Celiac, Encephalitis, Meningitis. We just cannot figure out what the heck that it is. His pediatrician thinks it is something neurological. So I'm making an appt with a neurologist. But I'd like to take him somewhere that the doctors specialize in developmental disorders like his. I'm happy that his PMD doesn't want to pump him full of meds that we don't know will even work. I'm so lost. It breaks my heart that I can't help him. He will come out of it every so often for a few minutes and then goes back into his own little world. I'm glad that I have others to talk to about it. I don't know you guys, but ya just might be my saving grace......
|
|
|
Post by Emilysmom on Nov 4, 2008 20:21:59 GMT -5
First of all, WELCOME to Uno Mas! I'm glad you found us, and hope you'll continue to post here. I'm sorry you're going through such a puzzling and worrisome time with your son. I wish I had some words of wisdom for you, but haven't been through anything like this. If you don't mind telling us, where do you live? Maybe we could help you find a Ds specialist near you?
Susan
|
|
|
Post by austinsmommy on Nov 4, 2008 22:16:26 GMT -5
I live in Corona, Ca
|
|
|
Post by Emilysmom on Nov 4, 2008 22:44:34 GMT -5
Great! Our Steff is from the LA area, and there are several others too.........Jodi, Michelle Mc, etc. They can help you find a good place. I'm sure of it! Hang in there.
Susan
|
|
|
Post by mg12061 on Nov 5, 2008 9:59:38 GMT -5
I don't post here often but I do read everyday.I feel compelled to add my 2 cents because you mentioned it may be neurological.My daughter was diagnosed with a very rare neurovascular disease at almost 5 yrs old.It's called moyamoya disease.I always feel compelled to mention it when something neuroogical is going on especially in a child with DS.The reason being it is so rare most Dr.'s ( even the best of neurologists)have never even heard of it and if they did they really aren't able to diagnose it correctly. Also chidlren with DS are more prone to having this disease.The typical symptoms are usually TIA's seizures,or strokes.But any neurological setback could be caused by this since it compromises the blood flow to the brian.My daughter's first symptom that I could see was she was just losing her balance more easily.Her speach wasn't affected right away but it was later when she actually had a stroke.The symptomes aren't always that of a typical stroke because it may not be completely blocking blood flow just comprimising it enough to casue things like confusion ,tingling or numbness, headaches,or weakness(my daughter had been waking up crying every morning for a very long time,we now realise that she was most likely waking up with a headache because of the pressure changes in your brian as you wake up).As I said this most likely is not what's going on , it is very rare,but I just wanted to put it out there so you can be informed.This disease is not always seen on just and MRI but is better diagnosed with an MRI/MRA.The MRA part isn't alwasy done.Then the definitive diagnosis is done with an arteriogram(sp?) O hope you can get some answers quickly it's so hard to not know whats going on with our kids......(((HUGS)))) Mary and kathleen
|
|
|
Post by twosomy21 on Nov 5, 2008 18:38:45 GMT -5
i never went through this with my boys but the low wbc count being low did not concern them? i do not have advice but hope you find something out soon, we see a reg. peds dr. and we have e.n.t, opthamologist and cardio visits, nothing too demanding but as far as specialist ,i do not know.i hope nuero. has an answer and hi from chino,ca
|
|
|
Post by damarasmom on Nov 9, 2008 22:56:29 GMT -5
I'm a little behind in reading this, but wanted to put my hand out to you and your family. It sounds so difficult to go through and frustrating. I wish I had some information to give you or someplace to send you to, but I have no experience in this. I pray that an answer is found soon and you get your son back to his normal state!
|
|
|
Post by austinsmommy on Nov 11, 2008 2:53:36 GMT -5
|
|
|
Post by mg12061 on Nov 11, 2008 10:36:14 GMT -5
That's good news! So glad your getting some answers,and have a plan. Mary and Kathleen
|
|
|
Post by lorraine on Nov 11, 2008 18:13:13 GMT -5
I'm so glad you have got an answer, and hopefully it won't be long before your son is feeling much better and hearing properly again.
Lorraine
|
|
|
Post by steffipoo on Nov 11, 2008 23:38:21 GMT -5
;D ;D ;D ;D ;D ;D OMG Austins mommy great news I am so sorry it took me till now to respond. BAD STEFF been MIA for a bit. That's really weird but glad you found the cause. I was about to ask if they tested his ammonia levels to see if severe constipation had led to high ammonia levels therefore causing confusion. Glad you found the cause. Man that had me worried. I live inWestchester CA right by LAX Austin sure is cute. I have a 10 year old named Olivia. Good to meet ya. (((HUGS))) Steff
|
|
|
Post by Emilysmom on Nov 12, 2008 7:00:41 GMT -5
Thanks for the update on Austin! I hope everything gets back to normal as soon as the antibiotics kick in. Susan
|
|