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Discussion Starter · #1 ·
so i ran across this site while googling to figure out whats going on with my little girl.. so first i'll intro duce my self.. My name is Jessica, Im a single mama to a wonderful little girl who will be One in august and i work full time as a CNA..<br><br>
so on to why i decided to post<br><br>
Kaylee is my little girl.. I had her Via c-section because of a malformed pelvis and the doctor always joked about her big head... in her ultrasound she measured 4 weeks ahead but my stomach always measured two weeks ahead.. i knew she would ber a big baby.. she was actually smaller then they thought she was only 8 lbs 15 ozs<br><br>
She is a Medi-cal child but that is until September once my job benifits kick in.. shes a healthy looking child in my eyes.. shes 31 inches 21 lbs and well her head circumfrence is almost 20 inches.. she has multiple hemangiomas.. one on her right eye a small pone between the eyes a few on her head you cant see because of the hair a huge one on the base on the skull and a few flushed with the skin on the base of her spine.. they are all flushed and the ones on her face are going away.. she also has a lack of pigment about an inch wide and 2 inches long on her rib cage.. devolpmentally shes on track.. shes starting the walk.. crawled early eats normal and is trying to talk.. only food alergy so far and shes tried lots of food seems to be grapes and they cause a severe diaper rash the whites of her eyes are blue but they said thats because she has blue eyes .. she is vax'ed she wears disposiable diapers and is formula fed.. family medical history includes severe bipolar, sociopath drug addicted Razor blade swollowing) father.. and me with General anxity disorder,PTSD and mood swings.. his family has smoking induced asthma i have alergies and my mom's side has wieght induced asthma.. my mom also has MS and my 22 year old brother has CF (affects gis digestive system not his respatory so much) once a year he has to be rushed to the ER when he gets sick but all and all hes 6 ft tall and 250 lbs.. he just he processed foods<br><br>
so now we got the basics out of the way for the most part i'll go on with my story<br><br>
Kaylee at birth was just a tad big blue when she came out but gained her color within few moments.. i had extreme swelling almost 40 lbs of water.. she was also jaundice which is normal.. full term baby.. i hemmoraged at about two days PP and had to have 4 pints of blood transfused because my hemoglobin was down to 5.1 or 5.4 i dont remember anything really until about a week PP.. So kaylee at a week PP had a strange sound in her chest.. i brought it up to her pedi at her 2 week check up.. he said "she was a c-section baby its normal.. i was like Ok but it was persistant.. she would wheeze and wake up multiple times at night catching her breath.. i brought it up to the doctor agian an even went to the ER to be told "your a first time mom your paranoid.."but ion my heart i knew something was wrong.. i brought up to the doctor Kaylee's medical history and my brother having CF.. he said "she isnt underwight it cant be that so iw as like "okay maybe i am just being a little over protective" but it was getting to the point she had a "cold almost every week since birth and im sorry but thats not normal... fim\nally at 8 months kaylee was really lathargic and blue around the lips and had a very high temp so i rushed her to the ER they looked at her told me she was fine and i demanding they at least took her temp.. when they did they rush her back to the actually emergancy room (here it seems like triage makes the desicion who gets seen::rolls eyes:<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> so after 7 hours her temp finally gets down to 101.1 and they said "well shes okay take her home and let her rest she probally just has a "cold" ugh" so my mom who was with me demanded that a chest xray was done and on her lungs they found a spot.. "its pnuemonia that will eplain why she is the way she is"<br><br>
"okay" so they sent me home with antibiotics and i was like alright but her breathing still didnt improve after 8 months so i took her to the Pedi and agian they told me i was paraniod "look at the growth charts shes normal.. but at that point i was fed up .. theres something wrong with my baby i know it so i switched PEditricians.. and i had to wait till june so her new pedi could look at her... she had a really bad rash covering her body from a viral infection but the new doctor actually listened to me.. i was told that i needed to come back ina week to see another doctor.. so i did.. they wanted me to keep a journal; of everything .. they brought up her head is "abnormally large compared to the rest of her and there was indeed a rumble in her chest.. they took her pulse ox and it was 89 but it went up about 30 min. later.. the doctor had the chief of pediatrics fromt he clinic come in and look at her as well.. they wanted to know all about my family history and they were very interested in the fact my brother has CF and the asthma (they gave her the syrup form of albutrol but the side effects caused her to go into a panic and freak out for 4 hours scared her to death..<br><br>
so they wantedme to keep another jornal for another two weeks.. and in the last four days shes woke up 3 times at night gasping for air and screaming for 30 minutes until i could get her back to sleep..<br><br><br>
sohere i am now.. on the 15th they want to see her agian for a second opinion when they saw her a few datys ago so in a month 3 dr appt.. more i can say for her last doctor.. they want all her medical records and they mostly want her head circumrenferece chart and if this doctor sees a need for it they want to have her have a sweat test done becauser they said "some normal sized babies do have CF size is a major indacator but its not always true that all cf babies are small" also if he agrees with the last two doctors they want to do a scan of her head and chest.. but right now they are diagnosing her as "chronic URI"<br><br><br>
so i dont know if this is the right place to post because i read alot of your stories and Kaylee seems so normal.. but im nervous as hell and i feel awful because i leave her with my mom while i work to make sure she can get off medi-cal and theres money.. it feels good tobe taken seriously for once but a piece of me wishes that "maybe it was all in my head"
 

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I don't have much knowledge but these two threads came to mind and I wanted to make sure that you had read them (re: the hemangioma on the skin at the base of the spine)<br><br><a href="http://www.mothering.com/discussions/showthread.php?t=923137" target="_blank">http://www.mothering.com/discussions...d.php?t=923137</a><br><a href="http://www.mothering.com/discussions/showthread.php?t=919443" target="_blank">http://www.mothering.com/discussions...d.php?t=919443</a>
 

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Welcome to MDC!<br><br>
I'm not a medical professional, so I'm not going to attempt to diagnose your child obviously, but there are a few things that really jump out to me in your post that I would like to talk about.<br><br>
First of all, it sounds like you majorly distrust your child's doctors. I can really relate to that. My daughter is also on Title XIX, or Medicaid, whatever you want to call it, and I know that for me, I felt for a very long time that I was receiving medical care that wasn't as good as what people with private insurance have. I think you should try to find other doctor's that will accept your insurance. Is there a university hospital near you? I didn't get good care for my daughter until I took her to a university.<br>
Also, I don't think you should be ashamed to be on state health insurance. If I didn't have it, I would be totally financially bankrupt after all my daughter's special needs issues. There is no way that I as a single parent could afford genetic testing for my daughter. My job offers health insurance, but the premiums are out of control. This is not my fault. The U.S.A. should give us a lot of things, but it doesn't. People in most other first world countries are born with the right to free medical care from birth until death. You should really watch "Sicko" by Michael Moore if you haven't already.<br><br>
Another thing to consider is that fevers in and of themselves are not illnesses. They are signs that the body is responding to foreign invasion. I would not seek medical care for a fever under 104 degrees. That is just me. Other people may not agree.<br><br>
I would also consider having her evaluated for allergies. I would do my best to eliminate any kind of potential allergens in her environment including cigarette smoke, excess dust, etc. I say this only because you have mentioned a family history of smoking and allergies.<br><br>
I would also look into alternative medicine, perhaps, homeopathy.<br><br>
I'm not sure what chronic URI is? Can you explain? Also CF is cystic fibrosis, right?<br><br>
My daughter has a genetic condition where her whites of her eyes are blue and her head is disproportionately large to her body. There can sometimes be respiratory issues that go along with it. It's called Osteogenesis Imperfecta. The chief symptom though is low bone density, and it's really rare, but you can look at the OI foundation's website and see if anything rings true for you. It's OIF.org
 

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<div>Originally Posted by <strong>LittleSaylorBoat</strong> <a href="/community/forum/post/11626714"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">My daughter has a genetic condition where her whites of her eyes are blue and her head is disproportionately large to her body. There can sometimes be respiratory issues that go along with it. It's called Osteogenesis Imperfecta. The chief symptom though is low bone density, and it's really rare, but you can look at the OI foundation's website and see if anything rings true for you. It's OIF.org</div>
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In my recent quest to figure out what, if anything, might be wrong with my daughter (who has many physical features of a genetic abnormality) OI is one of the many things I ended up googling... and saw the deal about the blue whites of the eyes being a sign which freaked me out because I'd recently noticed my other daughter has blue whites of the eyes. But then I read elsewhere that this is apparently normal in babies. Her eyes are still ambiguous but we think they are going to be gray like mine so in the blue family.<br><br>
Is your main concern right now whether or not your daughter has CF? Did you have any testing done when you were pregnant? Do you know if you are a carrier? You may already know this but you and your partner both have to carry the CF gene for it to be passed on. Having a brother with this means you could be a carrier but your partner would still have to have the gene.
 

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I'm so sorry this is happening for you. I don't have experience with CF but I will tell you TRUST YOUR INSTINCTS. There is not a mom in the world who WANTS her child to be "sick" - so if you suspect it, there is probably something going on. I was told "not to worry" so many times with my DD (she has developmental issues) and it turns out I was right. But I spent a year listening to all the docs because I was a first time mom.<br><br>
Good for you to get a new pediatrician...I hope you get the help you need!<br>
peace,<br>
robyn
 

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Discussion Starter · #6 ·
URI= Uper respatory infection... basically the term they use when they know theres something with the lungs and airway but because of her age or whatever the reason may be they cant determine it or they dont want to put a label on her quite yet.. i opted out of most testing while pregnant because i didnt want to know if there was anything.. and on the ex's side his mom only knows of one person with CF but there was never any test done on Randy to see if he was..l i guess i'll see what happens when i take her back on the 15th
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> sounds like you've been through a lot- just a note about the liquid albuterol- we use the nebulizer with xoponex which causes much fewer symptoms in babies/small children. just a thought you might bring up to them, if you want to try more asthma meds.<br><br>
I'm glad you switched peds. sounds like they're willing to figure out what is causing this. personally if I were you I'd insist that a sweat test be done, whether they see a need for it or not- the need is for you to rule out a very serious condition that runs in your family and you don't want to be wondering and worrying in years to come. the only way to rule it out completely is to do diagnostic testing. I hope everything turns out okay.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
It's so hard when no one will listen. I ran into that with my son too. I hope now you've got good doctors who you can trust.<br><br>
I'm frustrated that they didn't already do a sweat test on a child with respiratory issues and family history of CF. Such a simple test and you need to rule that out. So hopefully that is happening soon. If it doesn't you need to get very pushy.<br><br>
I did find information that if a child has multiple (3 or 4 or more) hemangiomas on the skin he/she is at increased risk of internal hemangiomas. One site said with three the infant should be evaluated for internal ones--including brain and liver and lungs. Some of those could cause breathing issues. I don't think brain would be the head size issue but I do think she needs assessment. <a href="http://tarheelhemangiomas.tripod.com/id6.html" target="_blank">http://tarheelhemangiomas.tripod.com/id6.html</a> <a href="http://members.tripod.com/~Michelle_G/HQA.html" target="_blank">http://members.tripod.com/~Michelle_G/HQA.html</a> They are difficult to detect and can be dangerous. If I were you I would want her looked at for internal ones given the number she has and in such different places (not just head and neck.<br><br>
It is my understanding that hemangiomas over the spine should be looked at very early to rule out tethered cord and other conditions. You want to find tethered cord before she has any damage. So you want that done now.
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">Where: Cutaneous hemangioma overlying the spine. When: As soon as it is recognized. Which: MRI of the spine without and with intravenous gadolinium is optimal. In the fist three months of life, sonography can be used as a screen to rule out intraspinal pathology. Why: Hemangiomas overlying the spine can be associated with intraspinal extension and dysraphic lesions including spinal dermoid, tethered cord and lipomyeloschisis.</td>
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<a href="http://www.birthmarks.us/hemangioma.htm" target="_blank">http://www.birthmarks.us/hemangioma.htm</a><br><br>
Does anyone in the family have a big head? Lots of times big heads are just a family trait. But of course you have to make sure there isn't anything else going on--particularly if it is growing out of pace.<br><br>
I don't honestly know if the blue sclera and pigment and hemangiomas and head or any combination of those are associated with any genetic conditions. I think it's encouraging that she's developing normally and healthy.<br><br>
Here is the information I found on blue sclera and conditions associated with it:<a href="http://www.parkhurstexchange.com/qa/A.php?q=/qa/Ophthalmology/1999-11-21.qa" target="_blank">http://www.parkhurstexchange.com/qa/.../1999-11-21.qa</a><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">If pronounced blueness persists after the first several months of age ophthalmologic evaluation is needed to ensure that ocular development is normal and to rule out the presence of elevated intraocular pressure. Systemic conditions producing blue sclerae include osteogenesis imperfecta as you mentioned, Ehlers-Danlos syndrome, Marfan's syndrome and Hallermann- Schermann-Streiff syndrome. Both Marfan's syndrome and osteogenesis imperfecta may have incomplete expression with findings limited to one or more organs. Given the age of this patient, a thorough ophthalmologic evaluation is indicated at a minimum.</td>
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So it looks like if her sclera is really blue that needs looked at too. If any of those syndromes seem to fit you would want genetics.<br><br>
In short, it sounds like your daughter needs some really good doctors. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I'm sorry you've gone this long without that. I should have switched doctors way younger than I did with my son. He would have gotten diagnosis and help sooner. His condition wasn't detected until 3.5. You're doing a lot better than me in that way!
 

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First, here's a <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Second, you're doing a great job mama!!! You're right that there are enough things that individually might not be a huge concern, but when you look at her whole, I definitely think it's worth being proactive.<br><br>
The breathing episodes she's having are NOT normal.<br>
The multiple hemangiomas are NOT normal.<br>
The large head may or may not be normal.<br><br>
I'm glad the drs are starting to listen to you now, but if you ever feel that they're not being as attentive as you would like, then go ahead and take advantage of that insurance and take her in to the dr or ER every single time she has anything slightly out of the ordinary. I had to get a little hyper-reactive to my son's issues before the drs finally took me seriously, and I think it was more of a "we'll do this test to placate the mom and get her to stop worrying." Except, oops, the test that was supposed to placate me came back positive for a genetic syndrome!<br><br>
THe swallow study that was done when he was 4 weeks old was only because I was mad at the pediatrician for not listening to me that something was wrong with my baby, so I took him to the ER where they admitted him, the swallow study showed severe dysphagia with aspiration. The bronchoscopy that was supposed to "rule out" defects found laryngotracheo AND bronchomalacia. The immune function labs that I had to finally INSIST on in fact showed a primary immune deficiency. The allergy tests proved what I had already found during an elimination diet.<br><br>
So, sometimes moms in fact DO know better, and I've found that the "squeeky mom" is what it takes sometimes. DOn't be afraid to insist, don't let the drs walk all over you. You are at least an equal partner in all her health care, and as mom you really trump everything and are the final deciding factor. DOn't be afraid to assert that if necessary.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">, please come back and tell us how it goes! This is a great webpage, we all get to feeling like family because we know each other's kids so well!
 

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Theother moms here have great advice, I'll throw in my experiences as well.<br><br>
My oldest sounds a lot like yours. She was born dusky and had an apgar of like 1.. (level II nursery for a week with one on one nurse) she had a lot of complications. To this day she still has a bigger head than her siblings, she also had apnia (which explained why she looks dusky sometimes) and her Drs call her shortness of breath and her being so prone ot respitory infections :RAD. (Reactive Airway) She also has a area on her rib that has no pigment, as do I. I also have a LARGE (but after nearly 30 years, faded) hemangioma. While my DD got sick a LOT as a child and always seemed to have temp, I want to let you know that she is now 9 years old and very healthy. She does use a nebulizer every once in awhile but other wise is your typical 9 year old.<br><br>
So, while getting everything checked out is always your safest bet, I want to let you know that its possible that everything is normal childhood stuff too. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 
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