Post your childs diagnosis!! - Page 13 - Mothering Forums

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Old 01-09-2007, 10:29 AM
 
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hi! Well Its kinda like were do i start. My son rp has had extremely agressive and aggitation issues since about 1 1/2 years old. we recently found out that he is bipolar /adhd/sensory disorders. rp has been very aggresive and aggitated to the point we have been thrown out of two day cares. At this point we have tried several meds and still trying. ritalin, adderal, adderal xr, daytrana, tegratol, risperdal, depakote. we havent seen to many good affects as of yet. we have also srarted psycotherapy. no good results as of yet!!!
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Old 01-10-2007, 12:36 AM
 
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roll call!

my son is now six, at 18 mos he was Dx with moderate autism, at 2 1/2 PFAPA (a cyclic fever disorder) was also finally Dx (fevers started at 10 mos), he has sensory issues, oral motor issues, apraxia, some OCD, expressive language stuff and receptive hearing glitches, as well as voluntary anorexia of childhood.. these are all teh things we dealt with.. from birth and ongoing.. currently: he is doing GREAT and is in typical kindy with itinerant support and speech and fine motor.. officially he is Dx with Aspergers but his secondary DX of pragmatic language disorder is him to a "T", his PFAPA is much better (three or so fevers a yr as opposed to twelve) and we have conquered his eating and sensory and receptive hearing issues

he is nearly indistinguishable from his peers thanks to aggressive OT, SI, DAN protocol, Iv chelation, homeopathy, speech, verbal based ABA and DIR floortime and feingold and GF/CF natural diet, chiropractic and cranial work
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Old 01-16-2007, 05:04 PM
 
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HI I AM NEW TO THIS FORUM WE HAVE AN 8 YEAR OLD BOY WHO AFTER 4 YEARS HAS BE DX WITH ADHD,ANXIETY,LD-NOS,ODD,TOURETTE'S SYNDROME & HYPOTONIA HE ALSO SUFFERS FROM VERY LOW SELF-ESTEEM.

WE ARE AT THE POINT RIGHT NOW THAT WE ARE NOT SURE HOW TO PARENT HIM. HE IS NEVER HAPPY, HE HAS RAGE ATTACTS WHERE SOMETIMES IT GETS SO BAD I FEAR FOR MY OTHER TWO CHILDREN (he is so out of it when he loses control)HE HAS THREATENED TO KILL HIS BROTHER & SISTER BECAUSE LIFE WOULD BE SO MUCH BETTER WITH OUT THEM. WE HAVE NO IDEA WHAT TO DO HE IS CURRANTLY ON MEDICATION TO HELP CONTROL HIS ANGER( but we dont think its working) EVERYTHING IS A FIGHT,HE NEVER DOES ANYTHING WRONG ITS ALWAYS SOMEONE ELSE.

IT IS SO SAD TO SEE HIM SO ANGRY ALL THE TIME , IT HAS GOTTEN TO THE POINT THAT I DREAD WHEN SCHOOL IS OVER BECAUSE I JUST KNOW WHATS GOING TO HAPPEN.
IF ANYONE HAS ANY ADVICE ON TOURETTE'S SYNDROME I WOULD LOVE THE INFO. THE DOCTOR DX WITH TOURETTE'S PLUS RAGE

THANK YOU FOR LETTING ME GET THAT OFF MY CHEST
BRAY'SMOM
MOTHER OF 3 WHO IS TRING TO HOLD EVERYTHING TOGETHER

OH I FORGOT HE ALSO HAS SID. SO IT IS HARD TO GET HIM TO BRUSH HIS TEETH, BATH. ANYONE HAVE ANY IDEAS ON HOW TO HELP? :
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Old 01-19-2007, 12:40 AM
 
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I am a mother of three...dd 4 1/2 and twin boys 2 1/2.: My youngest twin has Down Syndrome and was diagnosed a year ago w acute myeloid leukemia. He has been in remission since July and is doing so well. I love to tell others how much he can do, bc so many people think they know what it means to have ds...and they are not all the same..they are as individual as all of the rest of us. We are going to homeschool instead of putting everyone in preschool...do you think I am nuts? I feel up to the challenge.
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Old 01-30-2007, 09:16 PM
 
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my son is 3, will be 4 in april
he is my baby, an hour and 20 minutes younger than his twin sister
and has 2 other big sisters
(btw, normal pregnancy, full term, born at home healthy and looking good)

thomas' only actual diagnosis is seizure disorder
he was MOSTLY developing normally, seemed a little more quiet and introspective than his sisters-but i was trying not to compare
and also it runs in my family to talk very late, an issue of control i think
(5 years old for me!)
i did note that he never pointed or waved and that he did not play w/ toys in the same way that sisters did

started having seizures at 14 mos. and went downhill in general at the same time, lost all the words that he did have, b/c very confused and agitated most of the time, spacey and out of it, unhappy
lots of seizures everyday
they occurred in clusters 5-10 clusters a day, from as little as 3 to as much as 30 or more seizures in a cluster

long stories about all the stuff we tried
the doctors we went through
the testing he endured (extensive genetic and metabolic testing has turned up nothing)
the trial this has been for me on a personal level b/c i have never been a big supporter of allopathic medicine

but here we are now, he will be 4 in april
we have had NO SEIZURES for 25 WEEKS!!!!!! due entirely, i believe, to his weekly cranio-sacral therapy
(after the first session they dramatically reduced and after the 3rd session we haven't seen any)
he has been evaluated for and begins hippotherapy in a couple weeks which i am very excited about
he has been evaluated by the public school system and i got him placed in a preschool with only 2 other kids so he will almost always have one on one attention - will receive OT and speech there
have a neurologist i like
he is happy and bubbly and affectionate
totally non-verbal and does not appear to have any receptive language either
which is mostly a safety concern for me
he will communicate that he is hungry/thirsty, that he wants to be held,
or is upset,etc.
the school system at identified him as ASD

he's a wacky little dude for sure but he is a sweetheart

what else, oh! we are working with a homeopath now (the hahnemann institute) and i am excited about that

i live in indianapolis and would love to talk to other moms (nearby or not) about their experiences w/ seizure disorders, with CST (i'm registered for my first class!), hippotherapy, homeopathy (esp. related to seizures)

have not had a chance to read through all the posts here, wanted to get mine up real quick
but nice to meet you all
and oh, my name is elyssia
a long time ago some of you may have seen me
on the multiples page or the homebirth page
but i've been out of the loop for a couple years
--dark times with thomas (getting him tested for everything and getting real depressed as they tried to convince me he was terminal, or just researching all the things he was being tested for)
and then not having a computer at home until YESTERDAY
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Old 02-02-2007, 04:08 AM
 
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Elyssa
I was wondering if you would mind sharing the approaches you have taken with homeopathy and the like in regards to seizures. My youngest son has been having seizures and we are hoping to help him with chiropractic and homeopathy... were your son's seizures infantile spasms or another type of seizure?
thank you so much for the info
blessings
laura

laura, dh Brian, ds Rory 14, dd Ellie 13, ds Caelan 11, ds Seamus 9, ds Finn 7 and Penelope 2 !!!!

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Old 02-02-2007, 06:26 PM
 
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when all of this first started happening
i tried to work w/ homeopathy first
(along w/ changing his diet and looking for food sensitivities/allergies-
in my mind it seemed like he was fine while he was exclusively breastfed, which for him was almost 10 mos., maybe that was actually an early sign of his feeding issues)
i contacted a woman i know, used to know
we were friends and neighbors 10 years ago
now she lives in saudi arabia and is a student in a homeopathic college there
she came up w/ a remedy (cicuta virosa)
that i could see definitely affected thomas and his seizures
but we never got the right dosing
and b/c she was not near me to see him herself
we didn't feel like we could go any further

right now i am working w/ the hahnemann institute
and they are a little different from traditional homeopathy
look around their website, they have some books out there
that explain this in some detail
but the main difference is that they do "chronological" or "sequential" homeopathy
i wrote a long piece about thomas, my pregnancy, his birth, onset of problems, daily life
and included a chronological list of all traumas (emotional or physical), accidents, injuries, immunizations, procedures - anything that could have been a shock to his system
again, including his birth
and my state of mind during the pregnancy
in chronological homeopathy, they attack each thing on your list, in reverse order AS WELL AS treating the person's remedy picture, constitution, etc.
they do not believe in the precautions about mixing remedies or the strict dosing and timing
i have a phone consultation w/ the doctor (they are in canada) about every 4 weeks
we go over what i've been seeing since thomas' last remedy and what i might expect from the next one
he sends out a remedy (in powder form) for the next thing on thomas' list which thomas takes over a few nights
meanwhile thomas also has his drops, which he takes everyday
-one of them is cicuta virosa, that first remedy that we tried
we have only been w/ them for 3 mos.
and as of now, i don't feel like we're seeing real conclusive results
he definitely does respond to the remedies and has a very recognizable healing reaction each time
and he is making gains but right now i can't say if it's b/c he hasn't had seizures for a few months now or if it is the homeopathy
i do know that i have always believed that if anything can restore him and bring his little body into balance (even if it is a genetic thing) it will be homeopathy
i credit craniosacral therapy w/ stopping his seizures
have you done that yet? or does the chiro do it?

and finally, yes thomas was diagnosed w/ infantile spasms but not until last july- at age 3 years 3 mos.
before that they thought myoclonic and possibly other types as well but primarily myoclonic
we were being evaluated for the keto diet and seeing the superspecialist
she reviewed his case and his video EEG (which was part of the evaluation process) and diagnosed infantile spasms
since we got back online this week
i have just now been researching west syndrome and trying to not let it bother me, the prognosis
trying to remember that what i really believe
is that nothing is beyond coming back from
thomas is still here, his spirit is strong
and we can get him back
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Old 02-02-2007, 10:32 PM
 
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Thank you so much for your response, we have been using chiropractic since Finn was born, I snuck the shiro in as my Brother in teh NICU , and Finn has definatley benefited from that, had torticollis when he was born and could not turn his head and within 2 adjustments he was better... we have used a OT who also uses craniosacral and there was improvement but mostly in his general posture and balance. He has had inner ear problems and had tubes last April( not what I wanted but he was profoundly deaf with the fluid) and has had many immune system problems but we see a pediatricain who is a homeopath and have used remedies for him. There has not been much improvement with the remedies and our Ped doesn't believe that Finn is haveing seizures, he thinks that it is a personality flaw. We have gone to one Ped Neuro and she diagnosed him with breath holding and then I had to see a Neuro for a brain tumor and we mentioned that we were concerned about Finn he was quite adamant that we go to another more expereinced Ped Neuro and referred us to Dr John Gaitanis In Providence Rhode Island.
We have an appointment in March. The eeg that Finn had last year was only 20 minutes and was normal, though my Neuro said that this is very common and that unless he were having a seizure while on the eeg they may not get any results.
We are hopeful to avoid medication but as it has been a year and there hasn't been any change in Finn, we are concerned about the longterm effects on him. Thank you for the information about the difference between regular and Hannheman 'style' homeopathy. Our Ped considers himself a classical homeopath. We like him for certain reasons (non vax and his hands off attitude) but sometimes he is very hard to convince that something is important.

laura, dh Brian, ds Rory 14, dd Ellie 13, ds Caelan 11, ds Seamus 9, ds Finn 7 and Penelope 2 !!!!

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Old 02-07-2007, 09:57 PM
 
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My DD has Congential JET (Junctional Ectopic Tachycardia), GERD, and loss of hearing.

We found out she has C JET at 2 weeks old after she went blue and I took her to the hospital and then we were transported to Children's hospital where we stayed for 2 weeks in ICU. Congential JET is where her heart beats at around 250 bpm and has sever irregualarities. We found out she has GERD when she was 7 weeks old because she would scream for hours, vomit, arch her back, and would not sleep unless upright in arms. The hearing loss we are still waiting to be tested to see how much she can hear, if any. She doesn't respond to any noise (my DH can use power tools beside her and she will sleep!) She was also born at 36 weeks because of PROM and fetal distress although she didn't spend anytime in the NICU. She is on Flecinide for C JET and Randitdine for GERD, the GERD is a new diagonisis and we are currently finding a med to work.
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Old 02-09-2007, 07:19 PM
 
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Quote:
Originally Posted by RunningVegetarian View Post
Hi, I am new so please don't get upset with me if I am posting incorrectly
I have a daughter (11) who has been diagnosed with psychological disorders, including Bipolar, OCD, ADHD, ODD and now they think she has Reactive Attachment Disorder (LOL). Any other moms/dads with similiar kids. I need help with how you are surviving.

She is defiant to a "T", harms her younger brother, hates everything, blames everyone for her mistakes, lies, steals,...She is, unfortunately, horrible to be around. WE fear for our 2 other children and are seeking any help out there right now.
Denise
Hi! I was just reading your post and first of all wanted to say that my thoughts are with you because that is alot to deal with balancing your daughters emotions and making sure that the little ones are safe and are able to deal with the emotional aspect of having a sibling like that. But, I wanted to ask you if she was always a difficult child or did it just come on some-what suddenly? I am a ped/preg chiro and I have seen children have a sudden change in behaviors to the extreme because of a heavy metal toxicity. If a child of that description came into my office I would be thinking immediately about getting a hair sample to have it analyzed for heavy metals. Are you on a well or do you live by any plastic or chemical plants?
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Old 02-09-2007, 07:30 PM
 
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Quote:
Originally Posted by vxclayborn View Post
I'm not exactly sure what my daughter has, just a funny digestive system.

She was born with a misproportioned and slow GI tract, detached stomach, and intestinal malrotation. Mostly fixed now! We are still being treated for GE Reflux, recurrent esophagitis and stridor, persistent constipation and dysphagia. She is also very allergic to Red dye, and I suspect a milk sensitivity. Anyone in the same boat???
Hi momma. How old is your daughter? I was just wondering if you are giving her acidophilus daily? The acidophilus will help her gut digest the foods that she lacks the enzymes for. Especially if she has a diary sensitivity.
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Old 02-13-2007, 01:43 AM
 
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hello i am new here...nice to meet you all...my 5 yr old was born profoundly deaf he could not hear a thing...he is now in kindergarten doing great but its been a battle...when he was 20 months old he got a cochlear implant in his right ear and then when he was 3 he got the other in his left ear..he is doing great now talking and he is in a normal kindergarten class and the only help he needs is speech theraphy we go there 2x a week after school...

i enjoyed reading all of your stories and just wanted to share mine!
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Old 02-13-2007, 04:51 PM
 
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Oldest son has aspergers syndrome turettes and adhd,and rrp
(benign tumours that grown in his body that require frequent removal)
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Old 02-14-2007, 04:31 PM
 
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My son was diagnosed with a Juvenile Pilocytic Astrocytoma, a bengin brain tumor, in his cerebellum. He had obstructive hydrocephalus while the tumor was in his brain, but it resolved on it's own without a shunt or ETV.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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Old 02-20-2007, 02:35 PM
 
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My son has been diagnosed with mild Asperger's Disorder and ADHD. We are currently using behavior modification and helping him with his small muscle problems. His school is pushing meds, but we are fighting against that until he is in kindergarten, at least.

He is a great kid: he loves to learn and read and play and snuggle. I wouldn't change him if I could (most days.)
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Old 02-28-2007, 04:15 AM
 
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I've posted on this thread before but now we have some actual diagnoses!!
My daughter Nitara has allergic eosinophilic esophagitis. She currently cannot eat any foods and is on an elemental formula through her gtube. Nitara has very weak hunger feelings. She has reflux, some motility issues, chronic leg pain of unknown cause (still looking into it), and asthma.

Nitara is a real sweetheart, a brave girl, and I hope that things will look up for her soon. She deserves so much more than she has been given in life.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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Old 03-07-2007, 06:00 PM
 
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I've been posting around these parts for a while and I realized that I've never posted what exactly was going on with my boy. So here goes:

Joaquin was born with end stage renal failure at 35 1/2 week at home. His lungs were obviously not ready so we took him to the hospital and 2 or 3 days later they saw he was not peeing. One kidney was completely cystic and the other had cysts on it, but was still working a little. Turns out his ureters were the culprit - one was completely blocked and since urine (or energy) was not allowed to flow from the kidneys they turned cystic. The other ureter allowed so very little urine to flow through. They removed the the blockage in the kidney that was still working a little and put a stent in.

He started peritoneal dialysis a week after his birth and was on it until the night of his kidney transplant on August 28th, 2006. He has my kidney and so far so good. *fingers crossed* Now he's a thriving and happy (almost) 21 month old. We never realized how much his lack of kidney function was short changing him until we did the transplant. I was very hesitant and wasn't sure if this was the right path for us. It's been hard, but it was the only way for him.
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Old 03-10-2007, 01:50 AM
 
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My 15 year old son was diagnosed with ADHD and ODD when he was 3. We've run the gamut of meds, behaviour therapy, counseling, and neurofeedback training. He is FINALLY getting good marks in school and the teen years aren't being too rough on him. He's tried pot and does smoke cigarettes, but considering the outlook I had when he was little, I am happy with the way he's turned out.
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Old 03-10-2007, 01:57 PM
 
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Hi! I'm new here. My name is Meribeth. My daughter has been diagnosed with Cornelia de Lange Syndrome. She's almost 11 months old. We saw a neurologist when she was 2 weeks old who suspected CdLS but was thrown a little by the fact that she also had extra digits as opposed to the usual limb difference in CdLS kids. We then went through genetic testing(though there was no test for CdLS involved in all of it!). When we saw him again at 3 months, he confirmed the diagnosis for us.
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Old 03-17-2007, 11:28 PM
 
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Hello, I suppose it's time I finally post in here. My daughter, Violet, is 26 months old and was just finally diagnosed yesterday with PDD-NOS. We are still trying to rule out a few other issues. She has a history of seizures so we will be going to a neurologist to rule out epilepsy or sub clinical seizure activity caused by the autism...or whether it's both. Her audiologist also has a strong suspicion that she has a processing disorder, but she is too young for the testing. For now we are still in the- limbo/not knowing anything phase. I'm not even sure I believe she really has an ASD. It will be interesting to find out what the neurologist says.
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Old 03-20-2007, 10:37 PM
 
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My husband and I are in the process of adopting our niece who has Pierre Robin Syndrome. At 20 months, she is still only 19 pounds. She has a trach and feeding tube, and is eating about 2 tablespoons of pureed food at each meal. She is undergoing speech therapy, and her team includes plastic surgeons (to fix her recessed jaw), audiologists, pulmonologists and something else I'm not remembering. I'm having to assemble this team here in Memphis, as she is in another county. This will be our only (and unexpected) child, but we are SO excited to be bringing her into our lives!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 03-23-2007, 05:35 PM
 
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Well, it looks like it's time for me to post here. Our nearly son (nearly 6) has Sensory Processing Disorder (aka Sensory Integration Dysfunction) and asthma. He's been in OT for about a year and is doing tremendously. But, it still comes out when he's tired (can't stand too much stimulation) or otherwise overwhelmed.

I feel very blessed that we were able to get excellent treatment for him and that we understand his 'quirks' now in a way that neither my dh nor my brother (both of whom have major signs of SPD) were able to have.

It's still a bit hard for me to call him 'special needs', as his special needs aren't that great, compared to with what many children here are facing. But his needs ARE different than other kids, and so I'm coming to terms with that.

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Old 03-27-2007, 11:17 AM
 
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Esther is 9.5 weeks old and has Down's syndrome.
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Old 04-01-2007, 05:34 PM
 
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Lily is 6 months and had hypoxia ischemia with resulting severe global brain damage, cortical blindness, hearing loss, hypertension, seizures, and "unoffical" cerebral palsy.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
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Old 04-01-2007, 05:41 PM
 
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Is PHI another term for HIE (Hypoxic Ischemic Encephalopathy)?

I'm confused now...I thought that perinatal meant the period around childbirth, especially the five months before and one month after birth.

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Now I am a WOHM, college student, single mama. praying.gif to be belly.gifbfinfant.gifcd.giffamilybed1.gif, buddamomimg1.png, to a littlebabyf.gifagain someday. stillheart.gif 

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Old 04-01-2007, 05:48 PM
 
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yeah, for some reason the Dr's were using both terms. I was under the same impression you were. : I assumed it wasn't perniatal since she was 4 months, but I don't know why they said that.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
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Old 04-01-2007, 05:56 PM
 
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There, I changed it so it's not as confusing.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
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Old 04-01-2007, 05:58 PM
 
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Sometimes I think they even forget. (gasp)

Anyway, how is she doing? You haven't updated the carepage in a while (I can't imagine why...I know you just have HOURS of time to yourself). Is she still crying a lot?

There is a tribe for HIE in FYT as well as the yahoogroup I mentioned to you before. You can just read on the yahoo group, that is what I do.

treehugger.gif Alisaynovax.gif,intactlact.gifUsed to be a fly-by-nursing1.gifcd.giffamilybed2.gif, SAHM to three slinggirl.gif, all by ribboncesarean.gif, then they grew up. mecry.gif

Now I am a WOHM, college student, single mama. praying.gif to be belly.gifbfinfant.gifcd.giffamilybed1.gif, buddamomimg1.png, to a littlebabyf.gifagain someday. stillheart.gif 

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Old 04-01-2007, 06:17 PM
 
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She's doing alright. I'm actually updating the page right now, lol. She was really fussy the first week, calm the second week, and beyond fussy this week so far. *sigh* I'm sure she'll even out in a year or two like other moms of babies with this kind of damage are saying.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
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Old 04-01-2007, 06:42 PM - Thread Starter
 
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Hey Kathryn! Can you believe how long this thread is?



I can't think of anything else to say here since I just talked to you. :
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