OT-son needs to see a Ped endocrinologist*UPDATE*

[newman7501]

I am so glad I found the disABILITIES forum. My DS6 had his yearly physical yesterday and he hasn't grown in 6 months. The Dr. said she would have him come back in 2-3 months and measure him again but when I told her all my other concerns and she took into account his history she decided to be very proactive. You see, my DS barely spoke at age two, I always mentioned this to his last ped and she always said, "He's a boy, he's the second child." We sent him to preschool when he was three and they suggested we have him evaluated(although it was done so unprofessionally, but that's a whole other story). We did and at almost 4 he had the vocab of a 1year old, he struggled with the psych eval and he couldn't even complete the PT/OT tests. They immediately put him in the early ed program with speech 4 times a week and 6 months later he could complete pt/ot evals and got each service three times a week. Two years later he has come a long way, can't get him to stop talking, tested out of PT this year, played soccer and hockey, but is having a hard time learning to read and has issues processing info. Anyway, he sweats alot,especially at night, even in air conditioning, his teachers say he has stamina problems, he gets a pain in his right side, and has muscle issues with his neck. On top of all that he had an irregular heartbeat at this appt. Dr. did EKG and a rythym test on EKG and said it looked OK but is sending it to ped cardiologist just to make sure it is OK. Current Dr. knows how upset I still get about old Ped ignoring my concerns and has decided to refer him to a ped endocrinologist right away. She scheduled our appt for Oct 5 and we took him yesterday to have a ton of blood work done(that was horrible). I don't know what to expect at all, has anyone ever taken their child to this kind of specialist. I am trying not to worry, it helps that we are going to Disney in Dec and he is so excited about it. Sorry this post has been long but I just need to get it out. Any info would be great. Thanks
***See my latest post, DS had a good appt.***

 

[michelle9343]

First off It is always so scary to be dealing with the unknown. My DD see alot of specailist. endocrinologist being one of them. Most likely they will 1 st just talk , get a history and look at the blood work. Good luck.

 

[debbiemomto4]

I know this is scary but thankfully he has you to be is advocate. Hopefully the results will come out fine. I need to take my youngest to a pediatric endinocrinologist also. He is still growing but on the very slow rate. He had a tumor in his neck so he got radiation. Good luck and remember to just take it a step at a time. Did they give him emla cream for his arm before he had the blood test? Emla is a numbing cream you put on the area about an hour ahead of time. If he needs more blood work see if the doctor can give you some.

 

[newman7501]

I know this is scary but thankfully he has you to be is advocate. Hopefully the results will come out fine. I need to take my youngest to a pediatric endinocrinologist also. He is still growing but on the very slow rate. He had a tumor in his neck so he got radiation. Good luck and remember to just take it a step at a time. Did they give him emla cream for his arm before he had the blood test? Emla is a numbing cream you put on the area about an hour ahead of time. If he needs more blood work see if the doctor can give you some.

His own DR actually wanted to take his blood because she had numbing cream but since she recently moved offices she couldn't find it. She told me that they wouldn't use the cream at the lab but I had to get the blood work done soon so the results would be at the ped. endocrinologists office when we have our appt. She didn't think we would have to wait til Oct to get in, if she realized that she prob would have either found the cream or ordered it and had us come back. If he needs more blood work I at the Ped Endo. I am hoping they have that cream.
Thank you everyone for the words of support. I really am trying not to drive my self crazy(as I am a worrier by nature).

 

[3princesses+aprince]

My daughter sees a Ped. endocrinologist. She has Hyopthyroidism.
Her thyroid gland is there( sometimes you are born without one at all) but it does not function properly, she needs to take thyroid pills everyday. The thyroid is responsible for many things, like growth, My dd5 is about the size of a 3 year old ( she's been getting the thyroid replacement since birth so I don't know why she 's so small.) The thyroid is responsible for many other things also. DD's Dr. told me that years ago when they did not test newborn's thyroids in the hospital, and they had a thyroid problem ,they would have severe disabilities by 6 months of age. My DD does have developmental disabilities, mild to moderate. She gets speech therapy and OT at her preschool.

 

[newman7501]

My daughter sees a Ped. endocrinologist. She has Hyopthyroidism.
Her thyroid gland is there( sometimes you are born without one at all) but it does not function properly, she needs to take thyroid pills everyday. The thyroid is responsible for many things, like growth, My dd5 is about the size of a 3 year old ( she's been getting the thyroid replacement since birth so I don't know why she 's so small.) The thyroid is responsible for many other things also. DD's Dr. told me that years ago when they did not test newborn's thyroids in the hospital, and they had a thyroid problem ,they would have severe disabilities by 6 months of age. My DD does have developmental disabilities, mild to moderate. She gets speech therapy and OT at her preschool.

I believe my son had a thyroid test at birth, NYS requires quite a few newborn tests, but from my understanding a thyroid can stop functioning correctly at anytime. I know a few years ago I went to the dr for severe fatigue and one of my thyroid tests came back out of whack, I was retested two weeks later and it was normal again and I wound up being a chronic carrier of epstein barr(sorry completely OT). So I guess it really could be anything with my DS6 and I just have to wait.

 

[espana94]

My middle DD sees an endocrinoligist for "extreme short stature" due to spine bifida. She is 12, but is smaller than my 9 year old DD. The cream the doc referred to is called EMLA cream. When DD had a blood draw several years ago, the nurse used an adult gauge needle and blew one of DD veins. Need less to say, it was a bad day. Ever since, I insist on EMLA and a peds butterfly needle when they draw blood.

DD has been taking growth hormone therapy for almost 2 years. She has grown almost 6 inches while on growth hormones. We thought long and hard before going this route; but, ultimately decided to go with the hormones because being SO small really was an issue with DD.

If the endo recommends hormone therapy, be aware most insurance plans do not cover it. And it is VERY expensive. However, most manufacturers have asisstance programs. We get a portion of DD's perscription provided by Eli Lilly through their assistance program.

Hope this info helps.

Espana

 

[newman7501]

Espana, thanks for the info on HGH, I did do some reading about this and I was surprised many insurances did not cover it even when a condition was present. I understand that they would not cover it if a parent was worried their child wasn't tall enough to make the basketball team and so but if there is a true medical condition like what your child has I think it is awful that insurance does not cover it.
I also got some good news today, my DS DR called and said she faxed DS's EKG to Ped Cardiologist and they called her and said his irregular heart beat is a normal variant for a child his age and he has absolutely NO restrictions. She said he could play sports and we should go on our Disney trip and have a great time. I am so excited about this! Just one less thing to worry about.

 

[Mish]

We also have to see one. My son had a condition called Legg Calve Perthes. And since it was not progressing the way that it should the Ortho sent us to the dysphasia clinic they ruled that out so now we have to go to the endocrinologist. I hope everything is ok there too.

I am glad everything was ok at the Cardiologist. Now you have one less thing to worry about.

 

[espana94]

I'm so glad you got good news today! Let me know if you need any other info before going to the peds endo or about HGH.

Actually, I can probably tell you about most other peds docs, as well. DD has quite a fan club in the local medical community! LOL Actually, I think they love her 'cause my co-pays and insurance comapny are paying for their sports cars and vacation homes.

Espana

 

[newman7501]

I just received the questionere from the Ped Endo. yesterday and I am really feeling like a bad mom. DS is my 2nd child and I just didn't write all the milestones down like I did with DD9. I honestly don't remember when he could dress himself...I don't even think that is a milestone in the baby book I could have written down. I also think I am causing anxiety in my son about the whole thing too. He doesn't eat much, very picky and only likes 2 types of veggie(broccoli being one, weird, , I know). But the other night at dinner I made chicken, rice(he loves that too?) and broccoli and he ate really good. He looks at DH and me and asks, "I ate really good, am I going to grow so I don't have to see the new Dr?" I guess he really understands more than I thought and we have to be careful about what we say in front of him. My DH and I have decided not to talk about it unless he asks us questions, but I don't know if this is right and I don't know what to expect from the first app't so we can tell DS and calm his anxiety.

 

[espana94]

Don't sweat not knowing the milestones...I have three DDs. I can tell you every thing my oldest did during her first three years. Then my second came along, she is the one with spina bifida. I can tell you the major things -- when she crawled, her first word, etc. My third arrived three years later...poor thing, she has nothing of note in her baby book, I can't even tell you for sure what her first word was...I know the highlights, not the specifics like I do with DD1. It doesn't make me a bad Mom, just an overextended one.

Re: his comments at dinner, kids catch more than we think! When DD was younger, we would tell her we were going to visit a new doctor and then let her guide the conversation. She always asked for as much information as she needed at that moment. More often than not, she would come back later and ask something else. I know you are worried and you don't want to scare your son; but, you need to make sure that he feels comfortable asking you any questions he might have.

 

[MAGICAL WISHES]

Hello,

Just keep advocating for your son. If you don't think something sounds right or looks right go with your gut feeling. Parents have the final say so and have to sign to give persmission for everything. You have the power to tell them no or stop in the middle of a procedure like drawing blood.

I have taken my son to a ped endocrinologist because after years of being short stature and constipation it was really not right. I keeped telling him that something wasnt right. At two years old he did a bone age xray to tell the bone age. Over and Over on the growth chart he was not getting up to the line where he needed to be. He was plaining off or staying at a steady growth. Which is where he did not need to be. He finally referred us to an ped endocrinologist. We went thru a stim testing consisting of different times they would come in a draw blood. In between they gave him medicine to stimulate any hormone. After 3 weeks the doc called and said he was not making any hormones so he wanted us to schedule an mri with and without contrast. After 2 months of these and trying to set up the appointment we finally had an answer. Please don't let this scare you but he had a benign tumor on his pitutary gland. Thank god it was not cancerous. This was causing the shortness,constipation,headaches,vision,ect. We had a referell to a pediatric neurosurgeon and he was great. My son had his surgery 2/16/05 and is doing well. The doctor was able to get all of the tumor. He is in good health and is in 2nd grade and playing soccer. The best advice would be keep advocating for your son and go by your gut feeling. Lay it in gods hands and he will do the rest.

Good luck

gloria
mom to caiden age 8

 

[newman7501]

Hello,

Just keep advocating for your son. If you don't think something sounds right or looks right go with your gut feeling. Parents have the final say so and have to sign to give persmission for everything. You have the power to tell them no or stop in the middle of a procedure like drawing blood.

I have taken my son to a ped endocrinologist because after years of being short stature and constipation it was really not right. I keeped telling him that something wasnt right. At two years old he did a bone age xray to tell the bone age. Over and Over on the growth chart he was not getting up to the line where he needed to be. He was plaining off or staying at a steady growth. Which is where he did not need to be. He finally referred us to an ped endocrinologist. We went thru a stim testing consisting of different times they would come in a draw blood. In between they gave him medicine to stimulate any hormone. After 3 weeks the doc called and said he was not making any hormones so he wanted us to schedule an mri with and without contrast. After 2 months of these and trying to set up the appointment we finally had an answer. Please don't let this scare you but he had a benign tumor on his pitutary gland. Thank god it was not cancerous. This was causing the shortness,constipation,headaches,vision,ect. We had a referell to a pediatric neurosurgeon and he was great. My son had his surgery 2/16/05 and is doing well. The doctor was able to get all of the tumor. He is in good health and is in 2nd grade and playing soccer. The best advice would be keep advocating for your son and go by your gut feeling. Lay it in gods hands and he will do the rest.

Good luck

gloria
mom to caiden age 8

I am so glad everything went great with your son. As nervous as I am, I just keep trying to tell myself to lay it in Gods' hands. I don't know the exact scripture but it is one of my favorites, cast your cares upon HIM. It does seem to help me feel better. My son's current Dr. did tell me a mother's instinct is always right and I should always trust my gut. She is a real big advocate for my son and I am so thankful I trusted my gut and changed DR. With his old ped I probably would have been sent home and told there was nothing to worry about.

 

[AnnR]

I am an adult with panhypopituitarism. I developed it after surgery for a cyst on my pituitary gland when I was 13. I take HGH -they have realized that adults need it also. My insurance covers it so don't worry about that until necessary. I didn't grow for 2 years and no one caught it. Please check out this website:

http://www.magicfoundation.org/www

They are a good organization and will show you that you are not alone

 

[luvmarypoppins]

We have taken ds 16 to the pediatric endocronologist twice here on Long Island. The lst time they did 4 vials of blood, tested him for like 16 things and she ruled out he had 2 diseases. He looks very young for his age and she said his bone age might not be his physical age. Also she saw his one hormone level was low. I also told her he has taken lots of steroids for his asthma for the last 8 years. Just took him back this month and she said his hormone level has gone up a little, I got the xray done but she hasnt called me back yet, guess I will have to call and she has decided not to give him hormone shots at the present and she feels he is in a growth spurt right now but is still way behind where he should be. She wants to see him every 6 months. She feels it will take him a couple of years to catch up to normal. Best of luck to you and your ds.

 

[emerymt]

One can always ask the doctor to prescribe a tube of emla, actually it works much better this way as it does take a while to be effective. If it is applied at home, that is perfect. The trick is being sure the phlebotomist then uses the "right" vein!

Endocrinologic problems take a long time to figure out, the symptoms overlap so much with normal variations and even two disorders can seem very much alike. It is good to be persistent and see a specialist, but even then it can take a while to really get a handle on the problem. Hormonal problems are hard to diagnose, because basically they're abnormal levels of natural chemicals that we all have, which often fluctuate, anyway. Timing is everything with these tests, and sometimes they need to be repeated. So anyway, hang in there, and God bless. The bright side is, there are good treatments for almost all the endocrinologic problems

 

[newman7501]

Update- Ds went to the ped endo yesterday and it seems he has grown since his regular check up since August. All his blood work from August came back normal too. He did send DS to get bone age Xrays, which Dr is expecting to show my DS's bone age is alittle bit behind calendar age because he got his baby teeth later than the norm. As for the fatigue, Dr. said it could be a mild mitocondrial problem but overall my son looks really healthy and he didn't see the need at the moment to poke and prod him for any more tests. DS does need to go back in 6 months to be remeasured and see how he is on the growth charts and if he is still have fatigue issue and such they will run tests for the whole mitocondrial thing. I guess Dr. said that if DS was only having one issue it could not be a mitocondrial disorder but because he has fatigue, slow growth and multiple learning disabilities it could be that. Anyway for right now all is good and we are just to keep an eye on DS for any changes.

 

[Juliah]

My DD has a mitochondrial disease. I think it's really good that your doctor even has "mito" on his radar, as it is often overlooked, especially in kids with relatively mild symptoms. No one put together DD's weird combination of symptoms for a long time.

It can be a tricky thing to diagnose a mitochondrial condition since there is no one test that is absolute. A number of blood and urine tests can point in that direction. A muscle biopsy--done at a specialized center--is probably the closest to a definitive test, but even that takes a specialist to interpret. All of this is to say, if you and your doctor decide at some point to pursue the possibility of a mitchondrial condition, you might want to explore the best place to have the tests run and the best doctor to interpret them. I know people whose kids went through a lot of testing and later had to go through it all over again at a more specialized center because the first tests either weren't done correctly or the doctors didn't deal with mito enough to really know which tests to run or how to interpret them.

While there isn't a lot in the way of treatment for mito, there are some things that can help. DD takes CoQ10 and carnitine, both prescribed by her doctor, and these have helped a lot with her stamina and some of the other symptoms.

Good luck with your DS.

 

[newman7501]

My DD has a mitochondrial disease. I think it's really good that your doctor even has "mito" on his radar, as it is often overlooked, especially in kids with relatively mild symptoms. No one put together DD's weird combination of symptoms for a long time.

It can be a tricky thing to diagnose a mitochondrial condition since there is no one test that is absolute. A number of blood and urine tests can point in that direction. A muscle biopsy--done at a specialized center--is probably the closest to a definitive test, but even that takes a specialist to interpret. All of this is to say, if you and your doctor decide at some point to pursue the possibility of a mitchondrial condition, you might want to explore the best place to have the tests run and the best doctor to interpret them. I know people whose kids went through a lot of testing and later had to go through it all over again at a more specialized center because the first tests either weren't done correctly or the doctors didn't deal with mito enough to really know which tests to run or how to interpret them.

While there isn't a lot in the way of treatment for mito, there are some things that can help. DD takes CoQ10 and carnitine, both prescribed by her doctor, and these have helped a lot with her stamina and some of the other symptoms.

Good luck with your DS.

That's what DS's DR. said, that it is treated with vitamin therapies. I was very impressed with the DR. He really listened to family history and our concerns and I was impressed that he did have an idea of what a possible problem could be without just dismissing it because DS's symptoms are minor. We have a friend whose son was born with a severe mito. disorder and is terminal so when the doctor suggested that we both told him about this boy and Dr. reassured us that you are born with a severe disorder our DS won't just develop a severe disorder. Like I said we are very happy with the Dr.