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Diagnosed ONH


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  #1  
December 13th, 2007, 02:35 AM
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hi i'm hannah, i'm a newbie here. i have a 24 month old son and a 4 month old daughter and live near bristol uk.

I first noticed something not right with my 4 month olds eyes when she was a wk old, she didnt make eye contact even when feeding. i thought nothing of it and just assumed she'd do it in her own time but at 8 wks she still wasnt so our health visitor referred us to have her looked at propoerly.

we've bee seen by the paed and opthalologist so far, neither of which have determined nething yet, an are waiting for an MRI scan and elec testing and results for blood and wee tests, should be back on 17th.

She had rapid shakey eye movements, which have slowed loads now, wudnt focus, which has also improved, she now looks at her carseat warning label and some toys (although shes never really been interested in contrast like new babies are.) She still doesnt fix and follow but will turn in my direction if i'm talking. She still wont make eye contact either, you get the feeling shes looking at you but you dont know where exactly, you dont get that feeling of communication when someone locks onto your eyes.

Sorry about the essay! i'm finding it so hard not knowing whats wrong, its hindering her in so many other aspects of her development.

I'd love to hear from ne1 who has exprerience of this or can suggest nething, thanks
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  #2  
December 13th, 2007, 07:02 PM
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Hi! I have no experience with that, sorry! But I wanted say hello and welcome. I'm sure someone here knows about this! My son has ROP- retinopathy of prematurity and we see a specialist every 6-8 weeks for check ups!
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  #3  
December 14th, 2007, 12:22 PM
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Welcome. I am Jennifer, mommy to Alexis who has septo-optic dysplasia.

The rapid shakey eye movements is called nystagmus. My dd has also had it since she was born. As they get older and have more control and their vision matures, the nystagmus is reduced because they have better control. In my dd, hers is still there and will always be because of her visual impairment. She does not have great sight, so if she has trouble focusing and fixing on an object, her nystagmus increases. Also, when she gets tired or has been using her vision too much, her nysgtamus increases.

It is great that you are starting to see improvements in other areas. I don't have any experience with delayed visual maturation either, but I know that as my dd got older, her vision did improve slightly. Vision develops until the children are about 2 (or at least that's what our opthal told us), so we were able to a little improvement in her vision. Also, as she got older, she was able to learn how to best use the vision she does have.

I would definatley recommend an evaluation by a vision teacher through early intervention. They will be able to greatly help you and your dd. They will be able to do excercises to stimulate her vision and will help her develop all of her visual skills.

I know its really frustrating not knowing what is going on. Hang in there and hopefully you will be able to get some answers soon. If you have any more questions, please don't hesitate to post. I will try to answer them as best I can.

I hope you enjoy posting on JM
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  #4  
December 14th, 2007, 03:23 PM
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Thanks, how olds ur little one now?
I got an appointment thru for her MRI yesterday and i really dont want her to have it, really upsetting as shes so little still.
she's improved so much lately, her eye movements have slowed and she rarely does it (like you said when shes tired) and she even stared into my eyes for 5 seconds earlier, which was amazing! Do you think I'm within myrights to say i wana postpone the MRI for a few months and get her reviewed again 1st, c if she keeps improving?
thanks
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  #5  
December 14th, 2007, 07:57 PM
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My dd is 5 now. She also has had multiple MRIs and CT scans done (part of her SOD includes brain structure defects, so we see a neurologist and a neurosurgeon). She had her 1st MRI when she was 6 months old. She was diagnosed with optic nerve hypoplasia (the less severe form of her condition) when she was 4 months, and it took us 2 months to get the appointment for her MRI. I was really scared when she had her MRI done, but in our case, it was the only way to determine what condition she actually had, the ONH or the SOD. If they haven't explained the MRI procedure to you, they take the child into the room, she stays with you while they put her IV in and then she will get sedated she so does not move during the MRI. The MRI takes about 30-45 minutes and then they will recover your daughter. When Alexis had hers done, she was awake within maybe 20 - 30 minutes after the MRI was done. She did beautifully with no adverse effects.

Knowing what I know about my daughter and how vision therapy has greatly helped her, the earlier you know what is going on and the earlier you can start services, the better off she'll be. It is amazing what vision therapy can do. If it was me, I would have the MRI done as soon as possible. But, i also come from a very medical family and my father is an anesthesiologist (the person who will sedate your dd and monitor all her vitals) so it was easier for me to make the decision and feel more comfortable with the procedure. However, on the flip side, I know of some other parents who had MRIs recommended for their children and waited until they were at least 6 months old before having the MRI done. They have not mentioned any adverse affects of waiting a couple extra months.

Unfortunately, I really can't offer too much in advice on whether to wait or not. That is something you will have to decide, what's right for you and your daughter, what you are comfortable with, and what time will be right for you guys. It is though, definately within your rights to ask to postpone it, but before you do that, I would find out what specifically they are looking for or hoping to find/not find on the MRI and if waiting would negatively affect that. Have the doctors mentioned anything so far in regards to what they are thinking is going on, other than delayed visual maturation? If it is delayed visual maturation, how will the MRI help?

I hope this helps and if you have any more questions, I wil gladly try and answer them.
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  #6  
December 15th, 2007, 01:13 AM
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I think they need to rule out other things first, hence the MRI. I googled it and a discussion from here nearly 2 years ago came up, the mum's descriptions of their kids just fit Honey perfectly. The disadvantage of waiting is that she'll be even further behind, if there's something wrong she'll have missed out on 2 months help with it.

I didnt expect the appointment to come thru so quickly! Its all been explained to me, my worry is that they've said i cant feed her after 5am, she feeds at 3am then at 6am and so on so by the time she goes under at 10am she wont have fed for 7 hours, then theres the time shes having it done, and i cant imagine shes gonna wana feed straight after. she only weighs 12lb so i dont think she'll be too impressed by this!

She was born by emergency section after distress and cord prolapse and never fed well from the start, after a wk in hosp she was admitted to NICU overnight which really scared me, I know its not gonna happen but I'm just worried that so many negative things have happened in her 4 months here, whats gonna happen next? just seems unneccessary if shes improving.

I'll happily let her have it done in a couple of months if its still needed. hopefully she'll cope with it better then.

Who diagnosed ONH? We see a paed and we've seen an opthalmologist who said nothing jumped out at him and that nothing seemed structurally wrong (he was v. carefull with his wording.) Got to go back and see paed on mon to get blood and urine results (checked chromosomes and in case of CVS) so I'll discuss it with him then

Thanks, its nice to know that we're not the only ones goin thru this
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  #7  
December 17th, 2007, 01:46 PM
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Hi
Had Honey's Paediatric review earlier, he said that the Optgalmologist thought the back of her eye looked pale and he had concerns about her optic nerves. Because of this they're now looking into her maybe having SOD. They've cancelled her MRI for the timebeing as he says if she has SOD it could be dangerous to anestitise (excuse my spellin!) her. The Delayed Visual Maturation's still a posibility but they'll only get to this diagnosis after ruling everything else out.

I'm so worried now because she had an awful first few days and I'm worried she's looking more like she has SOD. She was distressed after being tightly wrapped in cord and with every mild contraction her cord would be compressed and her oxygen supply was stopped and her heartrate was dropping dangerously low. I was transferred and the hospital broke my waters in the hope of giving her room to untangle and speed things up. (The paed said that SOD affects cortisol and so the baby doesn't cope with stress well, so I'm linking this to Honey.) Her heartrate didnt improve so i was rushed in for an emergency c section. A midwife checked to see how dilated I was in theatre and found that the cord had prolapsed! She had to put her hand up and hold her head from coming down further onto the cord. Honey was born with great APGAR scores but didn't cry. (3am)

Hours later I got onto the ward and they finally let me feed her (5am). She didn't feed again til that night, she then fed 4hourly til morning and then at midday we were sent home. She didn't feed again, was sleepy and unrousable so we went to the local birthing unit who found her blood sugar had crashed (unsurprisingly!) So tey put a tube down and gave her some formula and she was given some sugarry stuff (I forget what its called) and rushed to hospital agn. After 5 days of 2hourly tube and cup feeds (which she couldn't or wouldn't even swallow for the first few days) she was strong enough to feed and we went home. The paed said SOD can also affect blood sugar and I wonder if she got off to a bad start and it spiralled out of control. We never found out why this happened.

I'm hoping and praying she's gonna be ok, I just want her to snap out of it and look me in the eye!

Forgot to say: most of her blood and wee tests came back fine but her liver's overworked. It's 144 instead of a normal max of 55. He said its not thru the roof tho as someone with hep's would be in the thousands!
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  #8  
December 19th, 2007, 08:18 AM
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I am sorry I haven't replied back yet. Things have been crazy hectic the last couple of days. I don't have time right now to reply, but I will try to either this evening or tomorrow. I just didn't want you to think I forgot about you. I have some definate thoughts and experiences I want to share with you, but it will end up being a novel and I just haven't had the time to post it yet.
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  #9  
December 20th, 2007, 04:35 AM
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No worries, thanks hun.

Got a call from paed yesterday, further blood tests showed that her thyroid's not working properly so its probably SOD. They've given her thyroxine and hydrocortisone. She's gotta see the hormone specialists on Thurs. I just can't believe its all happening. So worried for her future, I know SOD varies greatly from person to person but I desperately want her to lead a normal happy life, just wat to cry for her. Your views and experienes would be very welcome, hope ur dd's ok. Does/will she have to go to a special school?

So confused, Honey seems fine in other aspects of development, she/s found her hands, loves chatting, smiles and giggles when you make kissy noises on her cheeks and coos at lots of her toys (others shes not bothered with though). What'sthe difference between SOD and ONH? Is ONH part of SOD? Can you have it on its own? Would the thyroid trouble hint at it being SOD, does this mean she's likely to have lots more of the problems eg, obesity, diabeties, mental retardation, learning difficulties, growth trouble etc? I've also found conflicting info on whether the bad vision can be treated, read that ONH can be treated with stem cells, and that SOD can be treated with glasses, whereas my paed and various sites have said nothing can be done
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  #10  
December 20th, 2007, 09:24 AM
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Quote:
No worries, thanks hun.

Got a call from paed yesterday, further blood tests showed that her thyroid's not working properly so its probably SOD. They've given her thyroxine and hydrocortisone. She's gotta see the hormone specialists on Thurs. I just can't believe its all happening. So worried for her future, I know SOD varies greatly from person to person but I desperately want her to lead a normal happy life, just wat to cry for her. Your views and experienes would be very welcome, hope ur dd's ok. Does/will she have to go to a special school?

So confused, Honey seems fine in other aspects of development, she/s found her hands, loves chatting, smiles and giggles when you make kissy noises on her cheeks and coos at lots of her toys (others shes not bothered with though). What'sthe difference between SOD and ONH? Is ONH part of SOD? Can you have it on its own? Would the thyroid trouble hint at it being SOD, does this mean she's likely to have lots more of the problems eg, obesity, diabeties, mental retardation, learning difficulties, growth trouble etc? I've also found conflicting info on whether the bad vision can be treated, read that ONH can be treated with stem cells, and that SOD can be treated with glasses, whereas my paed and various sites have said nothing can be done[/b]
I am very sorry to hear that they are leaning towards SOD. And you are right, SOD varies greatly from person to person. I cried and grieved for quite a while after she was first diagnosed with the ONH and then all over again when she got the SOD diagnosis. After awhile, you just learn to cope. Alexis is doing pretty well, though she is still globally developmentally delayed. She was on track until about 12-15 months, then after that, her development was really slow. She did not walk until she was 2, talk until she was 3, and at 5, she is in a 12:1:1 special ed class with a full time 1:1 aide. She gets speech and OT 5x a week, vision 4x a week, and PT and orientation and mobility 2x a week. She is very routine orientted and does not tolerate disruptions too well, but she is making progress. SHe is delayed in her social development as well.

I know how confusing it all can be, and as time goes on you learn and understand more. It is very good that she coos at her toys and interacts with them. Alexis had difficulty with that from the get go.

ONH is part of SOD. ONH means that the optic nerves are underdeveloped. This can happen on its own with none of the other complications of SOD, or it can be part of the SOD. SOD is characterized by the ONH, pitutiary involvement and an absent septum pellicidum. There can be other brain structure abnormalities including hydrocephalus (water on the brain, or enlarged ventricles), a thin or absent corpus callosum (the main area where nerve fibers travel through in the brain - and a thin corpus callosum can lead to mental retardation). The SOD diagnosis definately means that there will be more involvement than just vision problems. There is definately the potiental for a myriad of endocrine problems that can occur at any time. The most common endocrine disorders are growth hormone deficiencies which is treated with an injection of synthetic growth hormone every day until they reach puberty, cortisol deficieny either every day deficiencies or only in stress situations. Hypothyroidism is also another common oone. As she is female, there can be problems with FSH, LH and other hormones necessary for ovarian function, however all these hormones are replacable. Alexis is growth hormone deficient, adrenal insufficient in stress situations, and has hypothyroidism. She also has moderate mental retardation, but does learn well in her school setting as they have adapted the materials to her learning styles. There is also the potential for diabetes insipidus, which is different from juvenille diabetes. In diabetes insipidus, they can make enough of a hormone called aldosterone, which helps concentrate urine and because of this, they are always peeing and it can lead to electrolyte imbalances. Alexis does not have this. You may find that your dd will display autistic tendencies. Many kids with SOD show some form of autism. However, it may or may not be true autism. The behaviors are very similar but the causes may not be the same. Alexis was recently diagnosed with autism. You may also find that she has trouble with textures, especially in her mouth. Children with visual impairments, and SOD in particular are extremely orally tactile defensive and do not like any types of textures in their mouths. Alexis has a feeding disorder and did not get off og stage 2 baby food until she was 5. Right now, she still does not know how to chew so we are working with a specialized feeding clinic for this.

I believe it would be possible to treat just ONH with stem cells. In that case, the optic nerve is not fully developed and it would be possible to replace them with stem cells that could grow into new optic nerves. I have not seen much research on this, but then again, I have not been looking. My husband and I have made the decision that we are not going to do anything about her vision (even if the technology becomes available in the near future) as she does have about 10 feet of clear usable vision. That would have to be a decision for her to make on her own because whatever we would do could make things worse. As of right now, there is no viable way to fix either the ONH or the SOD, as 1 we cannot make nerves regenerated or further develop. 2. with the SOD, it is so much more than just the optic nerves and we would have to fix brain structures, fix the pituitary, and so on. In regards to the glasses. The glasses will not give your dd any more vision. However, if she is near sighted (as my dd is - she is extremely extremely nearsighted) or far sighted, it will make the vision they do have much more usable. So to the best of my knowledge, nothing at this point can really be done to correct the underlying problems, however, things can be done to teach your dd to use what vision she does have to the best she can.

And I know a lot of what I just said is really scary and sounds really bad. Unfortunately SOD is a very complex and vvery pervasive disorder that affects many many aspects of the child. I will be honest, it is not a lot of fun, but you learn to accept her as she is, push her to be the best she can be, and love them for exactly who they are. Despite all of this, Alexis is an extremely upbeat, happy, outgoing, caring child who loves life and enjoys every minute of every day. Yes she has a very unique disorder with very unique needs, but she is perfect the way she is and we would not trade her for anything. A lot of what you do is coping, learning to accept the bad things with the good and learning how to get through the day to day and enjoy all of the developments as they come along. We cheer and celebrate every new skill she learns and that hellps motivate her to continue learning new things. She is 5 now, learning how to read, do math, and learning what normal kindergarteners do. She is albeit at a slower pace than most other kids, but its all still there and its just going to tkae some time for it to all come out.

My only other thought at the moment is if they are leaning more towards the SOD, I would definately get the MRI done sooner rather than later. With the various brain structure defects that can occur with SOD, you want to know as soon as possible. It will help now and in the long run. It will also help with the endocrinolgy aspect as well as they will image the pituitary. If the pituitary is close to normal size, chances are there will be less hormone problems, if it is small, then there will be more hormone problems.

I know this is probably information overload, and I am sorry for the novel, but I am more than willing to answer any questions that come up along the way.

PS Alexis spent a week in the NICU after she was born because she could not regulate her blood sugar either. That is another function of cortisol is blood sugar regulation. Also, you may find that once she is on the cortisone, her appetite might increase because those who are cortisol deficient tend to have poor appetites for some reason.
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  #11  
December 29th, 2007, 01:55 AM
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Thanks for your help, its good to hear your experience.

How's ur dd doing with the potty? Did u ave a good xmas?

Had Honey's hormone testing on thurs, was awful. Cuz she's at that chubby stage it took them 6 attempts over 4 goes to get a canula in. She panicked, screamed, scratched, was really hysterical. Then she'd calm down and they'd have to try again! So glad its over now. Should get the results on new years eve, think its gonna prove our fears right, that she's got something wrong with her pituitary and SOD. Next port of call will be VEP and MRI.

Was worrying we hadn't noticed any improvement lately but her uncle gave her a musical toy for her carseat which turns round and though her eyes were flitting about she was actually tracking it!

Is it just me or is it difficult to find cases of adults with SOD? What will life be like for our girls as adults? Will they get married, have jobs, be able to have children... She's happy atm but its hard to imagine she will be later on in life.

Also, do you have other children? I imagine it'd be pretty difficult to look after a newborn and a child with SOD.

So much seems to depend on how a badly affected the person is, even if they diagnose SOD we wont know how bad it is or what'll happen in future. So much uncertainty shrouding everything.
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  #12  
January 2nd, 2008, 04:14 AM
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You all ok?
Chased up Honey's results, they said she needs the hydrocortisone and that her thyroxine levels are ok on the ammount of med she's on.
Really didn't want them to say she needs the hydrocortisone, this means she has SOD doesn't it. They said they'll be in touch. At least they can do the MRI now and confirm it.

p.s wouldn't the heel prick test they do at 6days old have revealed thyroid problems? Her appetite ( after the early "blip" as the midwives put it, has always been good. Really can't get my head round all this.
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  #13  
January 4th, 2008, 08:50 AM
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Christmas was good and we made some good progress in the potty training. She still won't tell us when she has to go, but at least if you put her on the potty, she will go now.

I am sorry that the blood testing was a nightmare. I still remember going through that with Alexis. Even to this day, she still screams and cries and they usually get her on the first try. I am very sorry to hear that she needs hydrocortisone, and the thyroxine, and yes it could definately mean SOD. The MRI will be able to tell you either way for sure. It is really hard to hear it, but as I said earlier, you grieve the life you were picturing for your dd and learn to cope. There are still a lot of days where I want to scream and yell and throw things, but most days we celebrate all the good things.

I too worry about the future, and your right, I haven't found many adult cases of SOD, but considering how rare it is (Alexis' opth has been in practice for over 30 years in various states and has only come across about 100 cases), I am not too terribly surprised. PLus by that age, they may just say visually impaired and not mention diagnosis. I still worry about getting through school, will she be able to go to college, get a job, get married, have kids, function on her own and in society. On top of the VI, she's also autistic and moderately mentally retardded. I really worry about the rest of her life. I do try not to dwell on that, because those lead to really bad days, but I still worry every day.

Also, the heel prick at 6 days probably would not have picked up the thyroid problem. It is not a usual hormone they test at that age and I believe most heel pricks are done just to check sugar levels.

Have you scheduled the MRi and VEP yet?
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  #14  
January 4th, 2008, 02:12 PM
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Thanks for replying, this week been a busy one? That's a great start, hopefully with practice and time she'll get the hang of it.

It hurts having needles stuck in you and I suppose if you dont understand what they're doing and why it must be terrifying. They suggested we leave at one point and I was furious, we were the only thing to calm and reassure her, it'd have been even worse for her if we'd "gone for coffee as it's understandably stressfull for us" and left her to it.

Don't know who's sortin the VEP and MRI. Our ped said the Opthalmologist was booking both (he booked the 1st MRI date) but I haven't heard back about the VEP, I'll have to chase it up but my ped's on holiday and his secretary's not answering. I'm looking foreward (if that's possible!) to the MRI now- get it over with. Also, the endocrine nurse called and I missed it so rang back two days in a row now and she hasn't returned my calls! Think they're putting her hydrocortisone up from 1ml-3mls but I need the go ahead. The docs surgery rang and cancelled her immunisations on Weds, half an hour before she was having them done as the ped hasn't given them consent to do them (and surprise surprise they can't get hold of him!). Fed up with waiting around for them all! Sorry for ranting, really annoys me and puts me on a downer.

Worry that Honey too will be autistic. She's already v routine oriented. At the same age Fin didn't care if we were at a friends house at 1am as long as he was warm and fed but if Honey's not in bed b4 8 there's hell to pay!

I did find one girl had written on a forum or something. She was born the same year as me so is 21, she'd been diagnosed after a hoffific ordeal as a babe with her fitting and no-one knowing why. Think she'd then been hydrocortisone, thyroxine and growth hormone dependant. She'd been in and out of mainstream and special ed and had just finished college. It was really positive. Other than that I just find studies, worst case scenarios and definitions! Maybe a support group would be able to help us in this? I suppose there's nothing that can tell us what they'll be like though and it just depends on what happens.

Was Alexis small born? Honey was only 43cm (17in) long and 6lb13oz, really podgy for her frame. Think she'll need growth hormones. How do they check this? When did they know she was MR? Did it come on or has it always been so? Having real difficulty accepting all this as she looks so normal. i suppose as you say you just learn to live with it.
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  #15  
January 9th, 2008, 08:26 AM
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How often do you get blood drawn? Alexis has to have blood drawn 3-4 times a year, mostly to check her growth hormone levels (IGF-1 is an indirect measurment of GH), her cortisone levels and her thyroid levels. She still dreads having the blood taken. It has't gotten any easier for her and we've been doing this 4 5 years.

I haven;t found really any other support groups for SOD than here and I have no idea how to even start one and promote it so we can get other parents involved. It would be great for all parents because its so rare, finding other parents is a great help.

I am sorry that you are having trouble with the ped. I hate when that happens, or you continually play phone tag with them. Were you able to get ahold of the endo about Honey's hydrocortisone levels?

Alexis wasn't born small. she was 9lbs 4 oz, and 21 inches long. She was really big, but she spent a week in the NICU because she couldn't regulate her blood sugar. Knowing now that she is adrenal insufficient during times of stress and that cortisol regulates blood sugar, we think thats what the main problem was. After that she was very slow to grow and gain weight. She was considered failure to thrive for almost 3 years. She was diagnosed with the growth hormone difficiency when she was 2 1/2 and has been on growth hormone for over 2 years. During her blood draws for wendo, her IGF-1 levels (a hormone produced by the liver that is stimulated by GH) was always on the low-normal end of the range, then her growth started to slow so they did stimulation tests. She was given a pill and an injection of meds that stimulate the pituitary to produce GH. Blood is drawn 1 and 2 hours later. The magic numbers are 10. Anything over 10, and the pituitary produces enough GH, between 6-10 is borderline and below that is deficient. Alexis values were 1 and 0.9. So she now gets an injection of groweth hormone every day until at leat 14 (or when she reaches her full growth potential.

A thought on the autism, I don't see that I posted it. A lot of children who have SOD do tend to display autistic tendencies. Now there is a lot of debate about whether its actually autism or if it is just autistic tendencies. There are some researchers how believe that while the end results are the same (the autistic tendencies) the pathways for sighted children and VI kids (especially those with any brain involvement) are very different. We knew all along that Alexis had the autistic tendencies, but didn't get the official diagnosis until this year.
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  #16  
January 15th, 2008, 09:37 AM
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Hi, thought I'd check in. Hope you're all well.

Got hold of the endo in the end, she showed us how to give Honey a shot of hydrocortisone if she has d&v or for eg. breaks a bone. Scary! nice lady but arrived 1/2 hour late then really spoke down to us, irritating.

Still haven't spoken to the ped, got to go c him on Monday.

Stil no date for MRI or VEP! Aaaaaagh!

Not sure how often she'll have blood taken, still all in the future as she still hasn't been diagnosed. Think we no wat theyre gonna say tho !

Honey's thrived since her early blip, She's a little short but not noticibly so and V podgy! Complete opposite from ds, he was failiure to thrive, fell off the centile charts for weight but was on 98th for length! He had all sorts of pediatric tests done but nothin ever showed up. Think in hindsight he fed all night and didn't want to eat in the day and milk's jus not enough after 6mos. I gave up feedin him and gave him formula at 11mos and immediately he cut down night feeds over a few nights, slept thru, fed well in the day and put on weight!

Off to Opthal 2moro, not sure wat for tho, letter didn't say.

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  #17  
January 15th, 2008, 10:36 AM
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I know how frustrating these times can be. I was a little surprised that they showed you how to give shots at home for the hydrocortisone. Maybe its just the age difference. If Alexis has a trauma ie concussion, breaks a bone, diarrhea, high fevers, etc she gets oral doses and if she is vomiting, we have to go to the ER. Although, I would much rather give her a shot at home than go to the ER, but unfortunately, thats they way things go.

I would be really frustrated with not being able to get ahold of the ped and not having at least the MRI scheduled. GGGRRRR. I am getting frustated right along with you here, especially since you don't really have a confirmed diagnosis. I mean it sounds like SOD, and they are thinking probably SOD, but no actual diagnosis. Very frustrating.

Good luck at the opthal tomorrow. Hopefully he can at least give you a better idea of whats going on and get the MRI scheduled. I am keeping my fingers crossed that the doc says Honey has improved.

Has anyone mentioned vision therapy to you yet? It is really beneficial, and I know Alexis has done very well in her vision therapies. It was a godsend. You may want to ask the opthal tomorrow if it hasn't been discussed yet.
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  #18  
January 17th, 2008, 01:48 AM
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Saw the Consultant Opthal yesterday, she was really nice. She confirmed Honey has seperal ONH. She said she thinks that the right may be ok. She said she saw her "stilling", trying to focus and follow but nothing with the other eye, good news I suppose, but she did say someone else could look and interpret it differently so fingers crossed she's right. She said the disk of the left looks an odd shape and that the nerves are v underdeveloped.

She said she'd start the ball rolling with vision therapy and chase up her MRI.

I'd have thought that if one eye was ok (or even just better than the other) we'd have had more progress, she still doesn't make eye contact but the opthal said that she may experience delays as part of SOD, which I suppose would explain it.

It was the last thing I would've wanted before, but now I'm so relieved they've diagnosed her. It means we can progress, get help and actually get our heads round what is happening as apposed to fearing what could be.

She's pretty much sleeping through the night now she's weaning so I feel a lot better about her having the MRI now as I worried with her history she wouldn't cope well.

Sorry, I was a bit vague in regards to her shot, we have to give it to her then take her straight into ER where they'll pit her on a drip if she can't keep the meds down orally.
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  #19  
January 17th, 2008, 08:56 AM
fiefer87's Avatar Mega Super Mommy
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I'm sorry Honey's got the ONH and SOD diagnosis, but like you said, I am glad she has the correct diagnosis and things can progress from here. PLus you will be able to better wrap your haeds around everything. The not knowing was probably the worst.

I am glad she's sleeping through the night for you and you are feeling better about getting the MRI done. Vision therapy will definately be great with helping her progress. And yes, the delays could be from the SOD, but also, with one better eye it may be that Honey hasn't learned how to maximize the vision from the right eye. Alexis' left eye is dominant, but when she was a baby, before she learned how to better use her left eye, she was definately delayed. There could also be some double vision or blurriness going on if her eyes don't quite line up correctly or if the left eye is worse. But, again, most kids I know of that have any sort of VI had delays in their visual skills early on. So with therapy, those will definately improve.

Also, when you schedule her MRI, make sure you ask about whether to premedicate her with the hydrocortisone. I know when Alexis had her eye surgery, she needed it, but that was also surgery. I am not sure how anesthesia alone would affect cortisol levels. When Alexis had her MRIs done, she seemed to do okay, but she was making enough cortisol at that time, but I would definately ask about it. No reason to make waking up from anesthesia any more difficult.

Well, hopefully, you won't have to take her to the ER for the hydrocortisone ever, but knowing kids it will probably happen. Some days that's all I can think about what would happen, always going for trips to the ER when she gets really sick. But those are the punches and you just learn to roll with them. It's not always fun, but they more than make up for it in countless other ways.

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  #20  
January 18th, 2008, 01:33 AM
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That'swhy they couldn't do the MRI before, they couldn't do it while they didn't know, they said anestitising(sp!) her could be dangerous unless her cortisol levels were ok. I'll defo check that out.

What surgery did Alexis have? Was it a success? How's she doin with the sleeping, feeding and potty training?

Is there any way I can change the topic name? its depressin!
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