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Old 06-13-2006, 06:05 PM   #11
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Re: stressed, sick baby

no no Theresa, hijack away I'm very interested. Also I know EXACTLY what the second child means in terms of highlighting the differences. Like I said my oldest has autism, and while he is exceeding ALL the limits they set for him, it was (and sometimes still is) difficult. My second child was potty trained for 2.5 years before my first child was potty trained. My second was reading and my first still learning to speak. Those were hard times. I think though that it helped me get ready in some ways for Loch's unique issues.
His fever broke finally, and his latest blood culture and throat swab came back "moderate" for pseudomonas which is slightly better thoiugh not where they want it to be. I'll post after the I. D. appt tomorrow too. It makes me feel better to let it out.

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Old 06-13-2006, 06:32 PM   #12
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Re: stressed, sick baby


I'm so glad you have the immune Doc coming up. Have they tested him for IGG or any of the IG's stuff. My son has IGG and has to have iv treatments every 21 days.
They have done the death watch on Jason also and he has had 13 weeks of iv antibotics. He has had 10 surgerys, 3 pic lines and now has a port (best thing we ever did) those first 2 yrs were the worst but after he started his IVIG treatments he was so much better. He had a weird cyst in his throat at 9 months also.
If they don't give you the answers you need don't be afraid to get a second or third opinion. We had 4 before we finally got a answer for him. Mayo clinic told us to keep him home, not let him have contact with other kids and said he could never go to school, but treat him like he is a normal kid
We have one of the top immune doc in the country and I Love him. Now all I have to do is call and say Jason is sick and he has a script at the drug store in a few hours so there is no exposting him to the dr office.
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Old 06-13-2006, 07:06 PM   #13
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Re: stressed, sick baby

(((((((hugs & prayers )))))
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Old 06-13-2006, 07:10 PM   #14
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Let it all out, mama, we're here for ya! My goodness, I wish I could take all of your problems away. I am praying for your strong little Loch to be healthy and overcome all of these obsticles. I admire your strength in dealing with all of this and being so caring and giving. I have complete faith that your goodness will be rewarded. You are an amazing mother! I know some natural remedies for some of those diseases, but the most important one of all is the power of prayer. I've seen a many cases where loved ones were told by docs they would die soon, and they didn't.

Your little Loch has a strong will to survive and it is very possible for him to fully recover even if they say there is no chance. Keep your healing love for him strong. Your mom can send loving prayers instead of giving up on him, she just needs a reminder. Determined faith is always rewarded in time!

I will be researching these diseases that I don't know about. I imagine many of them came from the hospitals and unproper use of meds. The most important thing to do is keep his immune system strong....echinacea and elderberry, vitamin C. Just keep giving your love so he feels safe through it all. You are doing a great service for him. Stay strong, mama! I'm sending healing miracle vibes for ya!
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Old 06-13-2006, 08:24 PM   #15
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Re: stressed, sick baby

Well, my dd Celeste has Canavan disease. It is a neuro-degenerative genetic disease. Pretty nasty: http://www.ninds.nih.gov/disorders/canavan/canavan.htm

Basically she has no control over her body. She is visually imparied, cannot move independently, cant hold up her head by herself, has almost no control over moving her arms.

Neither DH or I knew we were carriers until she got diagnosed. She was always a very irritable baby. She literally cried 23 out of 24 hours a day! We had child protective services and the police called on us on a regular basis. She would cry so much and so hard she would get high fevers and vomit. She just couldnt stop, no matter what anyone did. That was our first clue.

She also always had a difficult time eating and her muscle tone was also off.

The biggest thing though was the lack of milestones. She just never did anything. Never lifted her head, never rolled, never made eye contact or tracked objects. Celeste never actually looked at me until she was about 5. Once day she just happened to look at me, right into my eyes for just a brief moment and I just sat there and cried... it was so amazing! Anway I digress!

We went to a developmental clinic when she was about 4 months old and they referred us to a million specialists. Three months and endless tests and hospital stays later, we got our diagnosis. I admitt I felt much better knowing what it was we were dealing with, but the prognosis was and is so hard. I can deal with a severly disabled child. I dont know how I am going to deal with loosing her. Its terrible to have to wonder every time something happens if this is 'it'.

Her health issues started around 18 months. She was sick all the time and badly dehydrated so we finally got her feeding tube. She also started having siezures around this time. Over the years that has really been the biggest hurdle. We have some ongoing respiratory issues as well but the siezures have been hardest. Every time she has a major one a little piece of her personality dissapears.

Now she is almost 7 and doing OK. She had a recent hospital stay because of a really bad siezure that lasted almost 3 days and she has not been the same since. She is sleepy all the time and its getting harder and harder for her to answer my questions (she does not talk but answers yes and no with eye blinks). Its like there is a foggy haze around her she just cant seem to get through. She used to have her bad days but mostly they were good days. Now its mostly bad days with a few good thrown in. I know this is disease progression. The siezures are getting worse because the disease is progressing. Her overall well being is getting worse because of the increase in siezures.

Now for the good. Celeste has made me a better person. I love her more than anything imaginable. She has taught me so much. She sits quitely and listens to the sounds of birds chirping. She smiles at the cool breeze in her hair. She giggles and laughs when she is being pushed in her swing. She loves life despite all the challenges she has been given. I am so thankful for every singel minute of every day I have her with me. I sometimes crawl in bed next to her just so I can hear her breathing. She is truly an angel. I feel truly lucky that I am able to be her mother.

This is her at about 2:
http://im1.shutterfly.com/procserv/4...108AZMmLdk4ZNb

and my favorite picture, on her make a wish trip to disney a couple years ago:
http://im1.shutterfly.com/procserv/4...108AZMmLdk4ZNb

I do really hope that you get some answers for your baby boy. I am more than happy to share any of our experiences, if I can help in anyway.
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Old 06-14-2006, 05:16 AM   #16
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Re: stressed, sick baby

Theresa! ok that IS a brutal diagnosis. There is always some peace in naming the beast, but not much sometimes You sound like such a great and lucky mom. People say to me (about my oldest, but now about the baby too) "well if you had it to do over again you'd abort or at least put him up for adoption right?" They can't imagine the joys they only see the heartache. I am sorry your beautiful (and she IS beautiful) little girl has such a devastating disease. The "could've beens" with such a pretty, gentle child must be overwhelming at times. She's beating the odds quite well though, she must have a strong spirit. I am heartbroken for the prognosis. You are lucky to live with an angel, even as it breaks your heart. Thank you for sharing with me. Please keep me updated via PM's
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Old 06-14-2006, 05:26 AM   #17
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Kathleen, they did test IGg, IGa, and Igm once, but they came back borderline normal. However he was septic at the time so they should have been through the roof. I am expecting them to retest those next week at immunology. My friends dd had a "button" for IV's etc. The ped doesn't want one in Lochlan because he gets septic easily and ports cause sepsis fairly regularly so he feels it would do more harm than good.... but lately he seems less sure. We never leave the house without our hand sanitizer, and the baby doesn't wave but he knows how to "wash wash" and will bring me his hands after he touches things in public
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Old 06-14-2006, 05:43 AM   #18
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MamaLove, thanks, I was hoping you'd chime in. I hear you have the answers If you have any questions let me know. Also, here are things that may matter in selecting herbs:
he's a large, soft child. He is gassy. He is fat but a poor eater. He nurses frequently and eats selectively. He wouldnt eat at ALL until 10 months of age and despite being offered a variety of healthy foods he picks out the meats and eats them almost exclusively. The spicier the better.
He's prone to turning blue, he's pale, he's always got some rashy bit of skin somewhere. Milk that touches his skin will "scald" it so we don't do dairy at all with him. He's a happy baby, in a jolly, mellow way- always smiling, merrily making mischief. He LOVES water and is drawn to it. He loathes fruit and juice. He covers his ears to the wind.

I hadn't been in church since I was 8-10yrs old. Then Loch was in septic shock w/ meningitis. My friend's husband is a priest. He blessed Loch and started a worldwide prayer chain. The Drs KNEW he'd die- but he kept not dying. After a few days he was not only "not dying" but he was getting better. My pediatrician went to church after a 35 year hiatus. I went to. I still go. And he's still here...
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Old 06-14-2006, 06:00 AM   #19
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All that without the support of your own mother! I wish I could give you hugs n real life!! My cousin has a "sick" daughter that we all love very much and it breaks my heart that you and your family have to go through this without that support. I hope and pray you find some answers. The right person will fall into your lap and it will all come together so that you can get your little guy back on track. I just know that will happen for you guys. Thanks for sharing your story and please keep us updated.
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Old 06-14-2006, 01:26 PM   #20
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Big hugs, mamas. Thanks for sharing the stories, I honor your strength and will be praying for your little ones.
I have a friend who is in Traditional Chinese Medicine school as well as studying ayervedic medicine who I am going to tell about the description of sypmtoms and character to see what she says. I don't want to suggest anything until I consult her first. Best wishes!
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